This Christmas was the first in several years that I haven't been in the middle of or still recovering from a MonSter-related relapse. For that alone, it has been one of the best holidays I can remember. But this whole month has given me an altered self-image, allowed me to take off the "Patient" persona for awhile and see myself as something other than just that. Having been subject to such debilitating things and needing others’ help so frequently, I had forgotten what it feels like to really take care of someone else.
A few weeks ago my dad had foot surgery and I went over to check in on him and to take food to him and my stepmom. For once, it was me that had to remind someone else to sit down, to rest, to let me get up and fetch this and that, to prop up pillows and help him get comfortable, to ask if he needed any medications, etc. After making Dad some lunch, my stepmom came into the room doubled over in pain and it turned out she needed to get to the emergency room immediately. Luckily, I was there and able to drive her to the ER and try to get her the help she needed. I went to the nurses’ station to nicely ask for warm, clean blankets when the IV nurse didn’t know what she was doing and got blood everywhere. Then I went back to ask (a little less nicely) when a doctor and/or medication would be arriving because my stepmom was in excruciating pain. I waited with Sheryl until her mom came to take my place and I went back to check on the other patient. I then made more trips back and forth bringing overnight bags, making dinners, etc. Over ten hours later I made it back home, exhausted but very thankful that I was there and able to help. (She is doing much better now, by the way, and slowly getting back to her normal, high-speed pace!)
Fast forward to last week and my poor husband had his wisdom teeth out, which many of you may remember how unpleasant the whole thing is. I drove him to surgery and this time it was me who took pre-op and post-op notes from the doctor and drove my drugged-out, gauze-packed husband home. And for once it was me who spent the weekend fetching, medicating, feeding, pillow-propping and reassuring him that even though it hurt like hell and he felt terrible, that it would get better.
I hope that my tone here is appropriately conveying that none of this ever felt like a burden or a chore and not for one minute was I resentful, annoyed or otherwise bothered by taking care of people I love. I was just so grateful to be able to be the "Caregiver" for a change. It gave me a perspective I had not had for quite some time - that in some ways, being the Caregiver can be just as hard as being the Patient.
As the patient, I am used to the feelings of guilt, and often feeling tired, alone, helpless and in pain. I had forgotten the worry, the fear, concern, the fatigue and feelings of helplessness that go along with being the caregiver. In the first 24-48 hours following surgery, Chris needed a lot of my help. More times than I can count he said, "I'm so sorry you have to take care of me like this," and every time he voiced such sentiments I just shook my head and replied, "You never need to apologize to me for that." Meanwhile I was mentally shaking my head at myself for the thousands of times I have apologized to him for having to take care of me. I guess I’m not the only person out there who feels guilty for needing other people’s help!
No one wants to feel weak and vulnerable like that. I sure as hell can't stand it. But I think this month has taught me that taking care of those we love and being taken care of is a two-way street. Maybe it’s our parents who take care of us until one day they need our help and the tables turn. Some of us may have a sick spouse who gets better and some have spouses who stay sick for their entire married lives. It isn't always equal as to who plays what role more often and it definitely isn't fair. But I think it is inevitable that we all get to play the roles of both "Patient" and "Caregiver" at least once in our lives.
And since I know that hoping for everyone I love to remain perfectly healthy, strong and accident-free for the rest of their natural lives is maybe a bit unrealistic, I will instead hope that I get more opportunities to play Caroline the Caregiver and give back to those who have given so much of themselves to Caroline the Patient.
Wishing everyone a safe, healthy and happy new year.
Wednesday, December 29, 2010
Sunday, November 14, 2010
Pain Scale
To date, I have drafted 4 different blog posts on the subject of "pain."
I have never been able to finish any of them for two reasons:
1. The pain interrupts me during every rough draft and every rewrite and the mere thought of sitting down to edit/write/rewrite makes my pain spike out of control since sitting and typing makes my herniated disc very angry.
2. I keep trying to write eloquently about Pain.
I have since concluded that there is nothing eloquent about Pain and for now, I give up trying to write about it in such a way. There are no words that can capture the true nature of relentless, mind-numbing, bone-jarring, cruel and intense pain.
Which is to say: Pain sucks. It sucks really really bad.
It affects everything I do and every decision I make all day long. The choice of whether to stand and eat my dinner versus sit on the floor versus sit in a chair leaves me in the kitchen holding onto my plate with tears streaming down my face, because I am so afraid of choosing the wrong thing which will lead to agonizing pain for hours to follow. If I have to live at this level of chronic pain for too much longer I think I'm going to lose my mind.
I am over it. I am so totally over it.
There are no words to describe how over it I am.
So I will merely leave you with this, courtesy of my friend Kimmy, which is the closest I have found to capturing the true nature of pain, while still being funny at the same time. Mind you, it is a sick, twisted sort of funny.
(Note: The following contains adult language and mildly disturbing cartoon stick figures. Viewer discretion is advised.) Alternate Pain Scale.
I have never been able to finish any of them for two reasons:
1. The pain interrupts me during every rough draft and every rewrite and the mere thought of sitting down to edit/write/rewrite makes my pain spike out of control since sitting and typing makes my herniated disc very angry.
2. I keep trying to write eloquently about Pain.
I have since concluded that there is nothing eloquent about Pain and for now, I give up trying to write about it in such a way. There are no words that can capture the true nature of relentless, mind-numbing, bone-jarring, cruel and intense pain.
Which is to say: Pain sucks. It sucks really really bad.
It affects everything I do and every decision I make all day long. The choice of whether to stand and eat my dinner versus sit on the floor versus sit in a chair leaves me in the kitchen holding onto my plate with tears streaming down my face, because I am so afraid of choosing the wrong thing which will lead to agonizing pain for hours to follow. If I have to live at this level of chronic pain for too much longer I think I'm going to lose my mind.
I am over it. I am so totally over it.
There are no words to describe how over it I am.
So I will merely leave you with this, courtesy of my friend Kimmy, which is the closest I have found to capturing the true nature of pain, while still being funny at the same time. Mind you, it is a sick, twisted sort of funny.
(Note: The following contains adult language and mildly disturbing cartoon stick figures. Viewer discretion is advised.) Alternate Pain Scale.
Friday, September 17, 2010
The Power of the Con
Living in the midst of an 'Aftermath' can be exhausting. Not only is your body working hard on healing itself but your psyche is working just as hard to put the broken pieces back together. It is alot of work, it can make your head spin sometimes and you can feel stuck in the mud worrying you may never get out again.
While I believe you have to wade through the muck before you can fully appreciate what's on the other side, sometimes you just need a break from all that mess. You need to remember what its like to just have some fun. Sometimes you need a muck-free weekend
My muck-free weekend was DragonCon.
Yes, its true: I am a geek, a nerd, a dweeb, a sci-fi-freak. I love all things Star Trek and Star Wars, vampires, werewolves and superheroes. I come from a long line of self-professed dorks.
On Labor Day weekend thousands of nerds just like me take over downtown Atlanta attending parties, seminars, panels, contests on their favorite comic books, movies, TV shows and books. Last Friday my Dad and I went and enjoyed some of the best people-watching in the country, we checked out the dealer rooms and we might have even snagged a Star Trek actor's autograph. On Saturday we attended the annual DragonCon parade with a bunch of friends. If you have never been, go ahead and make plans to go next year. There is not a more impressive display of geek-ness anywhere in the world, plus the costumes are insanely awesome.
On Sunday, Chris, Van, our fellow geek-friend Rebecca and I all dressed up (yes, in costumes) and marched down for an afternoon at "The Con." Here's a picture of us.
The result of all this was twofold:
1) We had So. Much. Fun. for 4 hours I forgot that I just went through horrible surgery and survived cancer. For 4 hours I forgot that I have MS. Its so rare to have several hours at a time when this happens and when it does I am so grateful for it I could just burst into tears.
2) We discovered that dressing as superheroes at a convention full of nerd gets you a lot of attention! There we were just walking through hotel lobbies and complete strangers would come up asking to take our picture. I cannot even count how many pictures we posed for, but there is a real chance it surpassed a hundred. I kept thinking, this is the closest I will ever feel to being a celebrity! It was the self-esteem boost I needed. Having recently felt so self-conscious about the new scars on my face and my ravaged scalp, I cannot tell you how much it meant to just feel that I could look normal - okay, well maybe not 'normal' but we did look good!
The makeup is long gone and my long black wig has been put away. My scars are still pink and fairly visible, my hair is thinning, my scalp is covered with scabs and with bright red new skin forming where scabs were and then there are the ever-so-attractive bald patches. But even with all of that, I find that I feel a little bit better looking in the mirror today that I have in months.
For 4 hours I got to be a comic book character, a crime fighter. And even with my costume now hanging in the closet I feel like I could kick ass and take names and not look half bad doing it.
While I believe you have to wade through the muck before you can fully appreciate what's on the other side, sometimes you just need a break from all that mess. You need to remember what its like to just have some fun. Sometimes you need a muck-free weekend
My muck-free weekend was DragonCon.
Yes, its true: I am a geek, a nerd, a dweeb, a sci-fi-freak. I love all things Star Trek and Star Wars, vampires, werewolves and superheroes. I come from a long line of self-professed dorks.
On Labor Day weekend thousands of nerds just like me take over downtown Atlanta attending parties, seminars, panels, contests on their favorite comic books, movies, TV shows and books. Last Friday my Dad and I went and enjoyed some of the best people-watching in the country, we checked out the dealer rooms and we might have even snagged a Star Trek actor's autograph. On Saturday we attended the annual DragonCon parade with a bunch of friends. If you have never been, go ahead and make plans to go next year. There is not a more impressive display of geek-ness anywhere in the world, plus the costumes are insanely awesome.
On Sunday, Chris, Van, our fellow geek-friend Rebecca and I all dressed up (yes, in costumes) and marched down for an afternoon at "The Con." Here's a picture of us.
The result of all this was twofold:
1) We had So. Much. Fun. for 4 hours I forgot that I just went through horrible surgery and survived cancer. For 4 hours I forgot that I have MS. Its so rare to have several hours at a time when this happens and when it does I am so grateful for it I could just burst into tears.
2) We discovered that dressing as superheroes at a convention full of nerd gets you a lot of attention! There we were just walking through hotel lobbies and complete strangers would come up asking to take our picture. I cannot even count how many pictures we posed for, but there is a real chance it surpassed a hundred. I kept thinking, this is the closest I will ever feel to being a celebrity! It was the self-esteem boost I needed. Having recently felt so self-conscious about the new scars on my face and my ravaged scalp, I cannot tell you how much it meant to just feel that I could look normal - okay, well maybe not 'normal' but we did look good!
The makeup is long gone and my long black wig has been put away. My scars are still pink and fairly visible, my hair is thinning, my scalp is covered with scabs and with bright red new skin forming where scabs were and then there are the ever-so-attractive bald patches. But even with all of that, I find that I feel a little bit better looking in the mirror today that I have in months.
For 4 hours I got to be a comic book character, a crime fighter. And even with my costume now hanging in the closet I feel like I could kick ass and take names and not look half bad doing it.
Sunday, July 25, 2010
Aftermath
When you're busy fighting a disease there isn't time to really stop and process everything. You're at war. You have your full battle armor on and you are charging the enemy at top speed.
Then someone tells you that the battle is over and that you have won. You have survived lab tests, PET scans, biopsies, lymph node dissections, surgery and 24 staples being jabbed into your head and ripped out of your head and you are covered with new battle scars, both visible and invisible.
But I don't have cancer anymore. They got it all out. That should make me really happy, right? And it does. But even that doesn't change the fact that having just survived another major ordeal on the battlefield that is my health has left me flooded with all those feelings I did not have time or energy to deal with during the fight. And they are overwhelming, making me question everything, making me wonder if there will ever really be a time in my life when my body is not fighting a serious, major battle.
The past 3 years have been a nonstop fight against the MonSter. Sometimes he wins, sometimes I do. Every time he rises up to challenge me, I put on my battle armor and I fight as hard as I can. Then just when I think I may have won, he's back again. War has become my new life. Hitting the MonSter with steroids, trying this injection and that infusion and those pills, seeing this doctor and that doctor. Seeing doctors has been my full-time job for over 3 years now. If only I got paid for it. I literally schedule my entire life around my doctor visits, infusions and therapies.
As Tysabri started finally working, I began improving and went through my final semester of college without a single relapse, the longest I have ever gone without one. I finally started breathing again. I remembered what it was like to feel sort of normal. I was hopeful about my future and the possibility of doing things and not having diseases rule my life and my calendar.
Then this new opponent – Cancer - showed up and I went through the old familiar motions of pulling my armor, not yet even dusty, out of the closet and putting it on. I am now beginning to understand that it is not during a battle, but after that we finally allow ourselves to mentally process what just happened and sift through the many emotions that a crisis brings with it. And when you factor in how many life-changing diseases I have been diagnosed with in such a short amount of time, the treatments I have endured, the symptoms I have learned to cope with...well, it all has a cumulative effect on one's ability to stay constantly positive and hopeful. And I find myself wondering if the past 3 years are now indicative of what my life will be like for the next 30 years and that chases my hope even further away.
In the past 2 months I have earned the titles of College Graduate and Cancer Survivor. I am proud of both, but it all has left me feeling that melanoma has forever stained what should have been at least a brief period of satisfaction and pride. Instead I find myself feeling scared, insecure and extremely frustrated. A friend recently said to me, “Recovery is not a straight path.” I guess I am learning to walk the winding road of feeling better and then worse, of moving forwards only to move backwards and not knowing how long it will actually take to be “healed”…if that word is really even attainable.
Honestly, I’m sick of healing, of constantly finding myself in a state of recovery, if not from one disease than from another. I’m sick to death of being “sick.” I’m sick of being back here, left in the wake of some disease and seeing the damage it has done to me, my body, my loved ones and my life. I’m sick of coming out of the mud only to realize that it does not wash off as easily as I was promised and in some places it doesn’t wash off at all.
I am emotionally exhausted and not looking forward to the soul searching that will follow as I decide what comes next…of course, factoring in the limitations of my health and the fears that these many diseases have now ingrained in me. I am trying as hard as I can to embrace the meltdown, so to speak…to let go, and find whatever lessons there may be hidden within it.
I am dealing with the aftermath.
But as one of my favorite quotes says:
The distance between who you were to who you are becoming is where the dance of life really takes place. – Barbara DeAngelis
So I guess I’m dancing.
Then someone tells you that the battle is over and that you have won. You have survived lab tests, PET scans, biopsies, lymph node dissections, surgery and 24 staples being jabbed into your head and ripped out of your head and you are covered with new battle scars, both visible and invisible.
But I don't have cancer anymore. They got it all out. That should make me really happy, right? And it does. But even that doesn't change the fact that having just survived another major ordeal on the battlefield that is my health has left me flooded with all those feelings I did not have time or energy to deal with during the fight. And they are overwhelming, making me question everything, making me wonder if there will ever really be a time in my life when my body is not fighting a serious, major battle.
The past 3 years have been a nonstop fight against the MonSter. Sometimes he wins, sometimes I do. Every time he rises up to challenge me, I put on my battle armor and I fight as hard as I can. Then just when I think I may have won, he's back again. War has become my new life. Hitting the MonSter with steroids, trying this injection and that infusion and those pills, seeing this doctor and that doctor. Seeing doctors has been my full-time job for over 3 years now. If only I got paid for it. I literally schedule my entire life around my doctor visits, infusions and therapies.
As Tysabri started finally working, I began improving and went through my final semester of college without a single relapse, the longest I have ever gone without one. I finally started breathing again. I remembered what it was like to feel sort of normal. I was hopeful about my future and the possibility of doing things and not having diseases rule my life and my calendar.
Then this new opponent – Cancer - showed up and I went through the old familiar motions of pulling my armor, not yet even dusty, out of the closet and putting it on. I am now beginning to understand that it is not during a battle, but after that we finally allow ourselves to mentally process what just happened and sift through the many emotions that a crisis brings with it. And when you factor in how many life-changing diseases I have been diagnosed with in such a short amount of time, the treatments I have endured, the symptoms I have learned to cope with...well, it all has a cumulative effect on one's ability to stay constantly positive and hopeful. And I find myself wondering if the past 3 years are now indicative of what my life will be like for the next 30 years and that chases my hope even further away.
In the past 2 months I have earned the titles of College Graduate and Cancer Survivor. I am proud of both, but it all has left me feeling that melanoma has forever stained what should have been at least a brief period of satisfaction and pride. Instead I find myself feeling scared, insecure and extremely frustrated. A friend recently said to me, “Recovery is not a straight path.” I guess I am learning to walk the winding road of feeling better and then worse, of moving forwards only to move backwards and not knowing how long it will actually take to be “healed”…if that word is really even attainable.
Honestly, I’m sick of healing, of constantly finding myself in a state of recovery, if not from one disease than from another. I’m sick to death of being “sick.” I’m sick of being back here, left in the wake of some disease and seeing the damage it has done to me, my body, my loved ones and my life. I’m sick of coming out of the mud only to realize that it does not wash off as easily as I was promised and in some places it doesn’t wash off at all.
I am emotionally exhausted and not looking forward to the soul searching that will follow as I decide what comes next…of course, factoring in the limitations of my health and the fears that these many diseases have now ingrained in me. I am trying as hard as I can to embrace the meltdown, so to speak…to let go, and find whatever lessons there may be hidden within it.
I am dealing with the aftermath.
But as one of my favorite quotes says:
The distance between who you were to who you are becoming is where the dance of life really takes place. – Barbara DeAngelis
So I guess I’m dancing.
Monday, June 28, 2010
100% Cancer-Free!
Finally some good news!
All 8 of the lymph nodes they biopsied came back clean and they also got clean margins from the re-excision of my tumor site. No more cancer for me!
I am one week post-op and coming along. The swelling is going down, there's some bruising, we've made it through washing the southern hemisphere of my head but the northern hemisphere still hurts too much to touch. Staples and stitches are due to come out Friday if they continue to heal well. I'm still pretty tired as my body heals and I am doing my best to take it easy and let people help me. Mostly the MonSter is playing nice, though having major surgery is something that can trigger him to rear his nasty head. I try not to think about that and just focus on resting, healing and staying inside where there is lots of A/C!!
Thank you for all the well wishes and prayers.
We appreciate them more than you know.
XOXO
All 8 of the lymph nodes they biopsied came back clean and they also got clean margins from the re-excision of my tumor site. No more cancer for me!
I am one week post-op and coming along. The swelling is going down, there's some bruising, we've made it through washing the southern hemisphere of my head but the northern hemisphere still hurts too much to touch. Staples and stitches are due to come out Friday if they continue to heal well. I'm still pretty tired as my body heals and I am doing my best to take it easy and let people help me. Mostly the MonSter is playing nice, though having major surgery is something that can trigger him to rear his nasty head. I try not to think about that and just focus on resting, healing and staying inside where there is lots of A/C!!
Thank you for all the well wishes and prayers.
We appreciate them more than you know.
XOXO
Thursday, June 24, 2010
and it's not even Halloween
Well, I am now 48+ hours post-op and to say I have a bit of a headache is an understatement.
The surgery went really well though. They ended up taking 8 lymph nodes out of my neck, from behind and in from in front of my ears. Apparently the oncologist said it was a "lymph node wild goose chase" to find them all. I like to make people really earn their money, ya know? ;-)Results from the biopsy will be in either tomorrow or Monday.
He then cut out another 3x5cm section from my scalp which hopefully will turn out clean margins, meaning all the melanoma is out of my head. Then it was the plastic surgeon's turn to sweat and earn his money. He said he was worried about closing me, that the hole might be too big and might need a skin graft. eek!! Luckily, he is a genius and was able to do this thing called a pinwheel flap or advanced rotation flap where he makes a lot of incisions all over my head, cutting and stretching little pieces together until they finally cover the hole completely. So yay to no skin graft! Boo to major MAJOR headache. I definitely do NOT recommend scalp resonstructive surgery, so please avoid it if you can. ;-)
So they sent me home Monday night covered in gauze and compression bandages. Mom said I looked like a nun, being wrapped around my head, chin and forehead. I think "nun" was the nicest thing she could think of and I really looked more like the Mummy.
The first couple days have been rough (as all post-op days are for anyone!) but I got my bandages off yesterday and can move my jaw again and I slept in the bed last night instead of on the recliner! Yay for small victories! Everything feels really tight and swollen. My face is pretty swollen and bruised which it may be for a while. Overall though, I believe I have traded my Mummy look for that of Frankenstein. Truthfully, I have not looked at my head. I am choosing not to until it looks a bit better. With all the physical trauma who needs the extra emotional trauma of forever having those images burned onto your retinas? I sure don't. However, Chris described it a bit and it involves a bunch of staples and stitches and incisions and I am fairly certain I would give Frankenstein a run for his money.
Luckily, I am related to 2 of the best dressed women on the planet (my Mom and Grandmother) and they have loaned me a zillion fabulous scarves, which may be part of my wardrobe for a while as my head heals, and hair figures out which way it is going and the parts they shaved grow back in. Luckily they didn't have to shave too much. It could be a lot worse! I also have several new hats thanks to Grandmother, my mother-in-law Barbara and my friends Lyn & Jen. It will be a new style era of fabulous headwear for sure.
Anyhow, I wanted to put an update out for everyone to see. I am not lying when I tell people I have the best support system of anyone in the world. Thank you for all the emails to make me laugh, the sweet voicemails and awesome cards. (Once I feel a little better I will take pictures of my kitchen and post them - it's amazing to see all the cards!! I think I am single-handedly keeping Hallmark in business!) We have a few more rough days ahead as we endure the healing process, but at least we are in the healing process thank the Lord.
Will post the biopsy results as soon as I have them!
Much love.
XOXO
The surgery went really well though. They ended up taking 8 lymph nodes out of my neck, from behind and in from in front of my ears. Apparently the oncologist said it was a "lymph node wild goose chase" to find them all. I like to make people really earn their money, ya know? ;-)Results from the biopsy will be in either tomorrow or Monday.
He then cut out another 3x5cm section from my scalp which hopefully will turn out clean margins, meaning all the melanoma is out of my head. Then it was the plastic surgeon's turn to sweat and earn his money. He said he was worried about closing me, that the hole might be too big and might need a skin graft. eek!! Luckily, he is a genius and was able to do this thing called a pinwheel flap or advanced rotation flap where he makes a lot of incisions all over my head, cutting and stretching little pieces together until they finally cover the hole completely. So yay to no skin graft! Boo to major MAJOR headache. I definitely do NOT recommend scalp resonstructive surgery, so please avoid it if you can. ;-)
So they sent me home Monday night covered in gauze and compression bandages. Mom said I looked like a nun, being wrapped around my head, chin and forehead. I think "nun" was the nicest thing she could think of and I really looked more like the Mummy.
The first couple days have been rough (as all post-op days are for anyone!) but I got my bandages off yesterday and can move my jaw again and I slept in the bed last night instead of on the recliner! Yay for small victories! Everything feels really tight and swollen. My face is pretty swollen and bruised which it may be for a while. Overall though, I believe I have traded my Mummy look for that of Frankenstein. Truthfully, I have not looked at my head. I am choosing not to until it looks a bit better. With all the physical trauma who needs the extra emotional trauma of forever having those images burned onto your retinas? I sure don't. However, Chris described it a bit and it involves a bunch of staples and stitches and incisions and I am fairly certain I would give Frankenstein a run for his money.
Luckily, I am related to 2 of the best dressed women on the planet (my Mom and Grandmother) and they have loaned me a zillion fabulous scarves, which may be part of my wardrobe for a while as my head heals, and hair figures out which way it is going and the parts they shaved grow back in. Luckily they didn't have to shave too much. It could be a lot worse! I also have several new hats thanks to Grandmother, my mother-in-law Barbara and my friends Lyn & Jen. It will be a new style era of fabulous headwear for sure.
Anyhow, I wanted to put an update out for everyone to see. I am not lying when I tell people I have the best support system of anyone in the world. Thank you for all the emails to make me laugh, the sweet voicemails and awesome cards. (Once I feel a little better I will take pictures of my kitchen and post them - it's amazing to see all the cards!! I think I am single-handedly keeping Hallmark in business!) We have a few more rough days ahead as we endure the healing process, but at least we are in the healing process thank the Lord.
Will post the biopsy results as soon as I have them!
Much love.
XOXO
Sunday, June 20, 2010
Father's Day
In honor of the day on which we celebrate our dads, I wanted to share a little bit about mine. Well, truth be told I have 3 dads now. For the past five and a half years I have had the World's Greatest Father-in-law (you know I won the In-Law Lottery, right? Seriously.) He makes me my favorite hamburgers, chili, or chicken soup any time I ask and he has even been known to put his own life in danger, hanging off his roof just to hang my WalkMS sign at his house!
For the past 15 years I have had the immense pleasure of having a stepdad who loves me, makes me laugh and taught me everything I know about theater. Before I knew he would become family, he influenced my decision to go to Pace...which is of course where I met Chris, so in effect, my stepdad could also claim to be responsible for introducing me to my husband.
Then of course, there's my Dad. Now I know everyone will say they have a great dad and all. And I believe you. But seriously....not kidding around...my Dad is a rock star. I mean, he is actually a Rock Star. Well, by day he is a pediatrician and looks after people's babies, but by night he plays in a band called Paradocs and a few years back they invited me to come sing with them and now we have a pretty decent band and my Dad and I get to rock out together.
Suffice it to say that my Dad is 100% responsible for my musical talent.
Well, I don't know...my Mom does a pretty mean version of both "Bali Ha'i" from "South Pacific" and the "Feed the Birds" song from "Mary Poppins", so really we'll say Dad is 98% responsible. :-)
For as long as I can remember I have loved music and it has been a huge part of my life and it is my Dad who gave this gift to me. He has that musical genius ability to be able to hear a song once and then play it on guitar (I hate people who can do this and I hate he did not pass this gift along to me!) He picked out our first piano, a beautiful Schumann baby grand and we named him Oscar. After Oscar arrived, Dad showed me which note corresponded to which piano key and from there, I taught myself to play. Oscar and I became the best of friends and when my parents divorced and we were going to be spending more time at my Mom's apartment closer to Pace, Dad told me to take Oscar with me. Even though owning a baby grand had always been my father's dream, he said Oscar needed to be wherever I was because we were meant to be together and we have been ever since.
I could write about so many things, including this generous spirit that my Dad has always had. For example, how many people form a rock band and go on to play dozens of charity events raising money to fight cancer, diabetes, HIV/AIDS, MS and more?? He is that kind of doctor, too, going above and beyond for his patients. When I was a little girl, he had a patient come in with a horrible heat rash, and discovered that the single mother was having financial troubles and living in a small apartment with no A/C...in the middle of August...in Atlanta. Most doctors would have prescribed applying cool compresses and ibuprofen for pain and then sent them on their way. Not my Dad. My dad went to Home Depot, he bought an air-conditioning unit which he paid for out of his own pocket. He then drove to their 110 degree apartment and installed the unit for them. That's the kind of doctor and man my Dad is.
People say things to me about how "unlucky" I am, especially when it comes to my health. Sure, I probably have more incurable disease than most, many of which are difficult to treat, to say the least. But how can anyone be more equipped to handle them all than me, because unlike the rest of the world out there fighting diseases, I have Dr. Larry Clements on my side. To say that I am lucky to have my Dad as a father is the understatement of the century. Not only did he give us a happy, often magical childhood, but he has been my superhero physician for 30+ years, giving me advice, doing research whenever needed, calling whomever was necessary to ensure that I receive the best possible care and treatment for any/all of my illnesses.
It is no secret I am a Daddy's Girl, and while this phrase may have negative connotations for some people, if you were MY Daddy's girl, you would have nothing but positive, wonderful things to say about it, knowing that you were the luckiest girl in the whole wide world.
Happy Father's Day, Daddy!
I love you more than words can say.
XOXO
C.C.
For the past 15 years I have had the immense pleasure of having a stepdad who loves me, makes me laugh and taught me everything I know about theater. Before I knew he would become family, he influenced my decision to go to Pace...which is of course where I met Chris, so in effect, my stepdad could also claim to be responsible for introducing me to my husband.
Then of course, there's my Dad. Now I know everyone will say they have a great dad and all. And I believe you. But seriously....not kidding around...my Dad is a rock star. I mean, he is actually a Rock Star. Well, by day he is a pediatrician and looks after people's babies, but by night he plays in a band called Paradocs and a few years back they invited me to come sing with them and now we have a pretty decent band and my Dad and I get to rock out together.
Suffice it to say that my Dad is 100% responsible for my musical talent.
Well, I don't know...my Mom does a pretty mean version of both "Bali Ha'i" from "South Pacific" and the "Feed the Birds" song from "Mary Poppins", so really we'll say Dad is 98% responsible. :-)
For as long as I can remember I have loved music and it has been a huge part of my life and it is my Dad who gave this gift to me. He has that musical genius ability to be able to hear a song once and then play it on guitar (I hate people who can do this and I hate he did not pass this gift along to me!) He picked out our first piano, a beautiful Schumann baby grand and we named him Oscar. After Oscar arrived, Dad showed me which note corresponded to which piano key and from there, I taught myself to play. Oscar and I became the best of friends and when my parents divorced and we were going to be spending more time at my Mom's apartment closer to Pace, Dad told me to take Oscar with me. Even though owning a baby grand had always been my father's dream, he said Oscar needed to be wherever I was because we were meant to be together and we have been ever since.
I could write about so many things, including this generous spirit that my Dad has always had. For example, how many people form a rock band and go on to play dozens of charity events raising money to fight cancer, diabetes, HIV/AIDS, MS and more?? He is that kind of doctor, too, going above and beyond for his patients. When I was a little girl, he had a patient come in with a horrible heat rash, and discovered that the single mother was having financial troubles and living in a small apartment with no A/C...in the middle of August...in Atlanta. Most doctors would have prescribed applying cool compresses and ibuprofen for pain and then sent them on their way. Not my Dad. My dad went to Home Depot, he bought an air-conditioning unit which he paid for out of his own pocket. He then drove to their 110 degree apartment and installed the unit for them. That's the kind of doctor and man my Dad is.
People say things to me about how "unlucky" I am, especially when it comes to my health. Sure, I probably have more incurable disease than most, many of which are difficult to treat, to say the least. But how can anyone be more equipped to handle them all than me, because unlike the rest of the world out there fighting diseases, I have Dr. Larry Clements on my side. To say that I am lucky to have my Dad as a father is the understatement of the century. Not only did he give us a happy, often magical childhood, but he has been my superhero physician for 30+ years, giving me advice, doing research whenever needed, calling whomever was necessary to ensure that I receive the best possible care and treatment for any/all of my illnesses.
It is no secret I am a Daddy's Girl, and while this phrase may have negative connotations for some people, if you were MY Daddy's girl, you would have nothing but positive, wonderful things to say about it, knowing that you were the luckiest girl in the whole wide world.
Happy Father's Day, Daddy!
I love you more than words can say.
XOXO
C.C.
Friday, June 18, 2010
Melanoma Melodrama
My brother gave me that title for this episode of my life.
Hopefully someday soon we will all look back and laugh about the ridiculousness of the "Melanoma Melodrama."
In the meantime, my surgery is this Monday, June 21st. I will basically be at the hospital all day but I luckily don't have to spend the night. First, they will inject me with some sort of radioactive dye (between the PET scan and now this I am surely going to turn into some sort of superhero - aren't there a lot that began with exposure to radioactive material?) After that I have to sit and wait for the dye to spread from the tumor site down into my lymph nodes then they put me under, take a bunch of my little lymph nodes out, cut out a bunch more of my scalp, then they attempt to put Humpty Dumpty back together again. The plastic surgeon who is sewing me up isn't sure what methods he will have to use, as he will decide that based on how much scalp the oncologist leaves for him to work with! (gross, I know.)
Thank you for all the emails, cards, phone calls. We really appreciate it. And thank you for all the offers for food, help with chores, driving, etc - we will be taking everyone up on them once we know a bit more what we need.
Send happy thoughts my way on Monday. I go under around 2pm and the whole thing should take around 3 hours...and then we are on our way to leave the Melanoma Melodrama behind us once and for all.
Hopefully someday soon we will all look back and laugh about the ridiculousness of the "Melanoma Melodrama."
In the meantime, my surgery is this Monday, June 21st. I will basically be at the hospital all day but I luckily don't have to spend the night. First, they will inject me with some sort of radioactive dye (between the PET scan and now this I am surely going to turn into some sort of superhero - aren't there a lot that began with exposure to radioactive material?) After that I have to sit and wait for the dye to spread from the tumor site down into my lymph nodes then they put me under, take a bunch of my little lymph nodes out, cut out a bunch more of my scalp, then they attempt to put Humpty Dumpty back together again. The plastic surgeon who is sewing me up isn't sure what methods he will have to use, as he will decide that based on how much scalp the oncologist leaves for him to work with! (gross, I know.)
Thank you for all the emails, cards, phone calls. We really appreciate it. And thank you for all the offers for food, help with chores, driving, etc - we will be taking everyone up on them once we know a bit more what we need.
Send happy thoughts my way on Monday. I go under around 2pm and the whole thing should take around 3 hours...and then we are on our way to leave the Melanoma Melodrama behind us once and for all.
Friday, June 4, 2010
Off-Roading
It would be a vast understatement to say that my life is not turning out exactly as I had envisioned. It has strayed from the path.
Just when my MS starts to behave and I think I might get a short break from all the “off-roading” I find myself thrown off the path, once again covered in mud.
But how deep is this mud? Is it quicksand-mud? Or just a little bit of dirt? Can I easily walk out of it and get back to the path or will I start to sink?
It is going to take a little while to figure out how deep or how shallow this cancer-muckity-muck is. I am stuck in the mud waiting on phone calls with my PET scan results and my LDH levels or with dates that my surgery can be scheduled. Then I will wait to see how the surgery goes, how much they have to remove and how extensive the repairs will be to the tumor site, whether it will be an easy close or will require reconstructive surgery. They will take out 3 or 4 of my lymph nodes and I will wait some more in the mud for them to tell me that they showed no signs that the melanoma has spread, or they will tell me the unthinkable news that it did show up in my lymph nodes.
People come to visit me in the mud, standing cautiously at its edges. My regular doctors and nurses come by and new doctors and nurses appear to join my Care Team. Friends and family arrive, at the ready in case I start to sink and they need to reach out with branches or throw ropes.
We are waiting to see what the mud does, to see how I react to this new mud and to see how long it will take to get out of it, so I can get back to the path that I was on…the path which will inevitably have changed by the time I return to it. So I will have to go in search of it, or else find a new path altogether, which is sad, scary, exciting and infuriating all at once. I wait in the mud and it’s lonely and messy and not at all fun.
And even though there are people all around me, I am the one back in the mud…still in the mud. Alone.
Some days are easier than others.
And some hours are simply unbearable and I am certain that I cannot possibly stand one more minute living in this muck and if I don’t get out soon I am going to lose my mind.
I just want to be a normal, healthy, non-mud-covered person making my way down the yellow brick road. Is that really so much to ask?
Just when my MS starts to behave and I think I might get a short break from all the “off-roading” I find myself thrown off the path, once again covered in mud.
But how deep is this mud? Is it quicksand-mud? Or just a little bit of dirt? Can I easily walk out of it and get back to the path or will I start to sink?
It is going to take a little while to figure out how deep or how shallow this cancer-muckity-muck is. I am stuck in the mud waiting on phone calls with my PET scan results and my LDH levels or with dates that my surgery can be scheduled. Then I will wait to see how the surgery goes, how much they have to remove and how extensive the repairs will be to the tumor site, whether it will be an easy close or will require reconstructive surgery. They will take out 3 or 4 of my lymph nodes and I will wait some more in the mud for them to tell me that they showed no signs that the melanoma has spread, or they will tell me the unthinkable news that it did show up in my lymph nodes.
People come to visit me in the mud, standing cautiously at its edges. My regular doctors and nurses come by and new doctors and nurses appear to join my Care Team. Friends and family arrive, at the ready in case I start to sink and they need to reach out with branches or throw ropes.
We are waiting to see what the mud does, to see how I react to this new mud and to see how long it will take to get out of it, so I can get back to the path that I was on…the path which will inevitably have changed by the time I return to it. So I will have to go in search of it, or else find a new path altogether, which is sad, scary, exciting and infuriating all at once. I wait in the mud and it’s lonely and messy and not at all fun.
And even though there are people all around me, I am the one back in the mud…still in the mud. Alone.
Some days are easier than others.
And some hours are simply unbearable and I am certain that I cannot possibly stand one more minute living in this muck and if I don’t get out soon I am going to lose my mind.
I just want to be a normal, healthy, non-mud-covered person making my way down the yellow brick road. Is that really so much to ask?
Monday, May 24, 2010
Post-grad
In case you missed the big news...I am officially a college graduate!
Sunday: Stay in my pajamas all day to rest and recover from the excitement of Saturday.
Monday: I wake up feeling good, ready to face the world as a college-grad, and then the doctor calls to inform me I have skin cancer. To be precise, I have melanoma.
I'm sorry. What?!?? Did you call the wrong patient or something? I'm MS Girl...I'm not Cancer Girl! That will require a totally different cape and costume, not to mention I don't have time or energy for all new sets of fundraisers!! (by the way, Team Wearing Red Shoes has raised over $19,500 making us the top fundraising team in the entire state of Georgia for 2010!)
Meanwhile, I am so proud of my accomplishment, of reaching this goal that has taken me over a decade and many hurdles to complete, and I just wanted to spend a day or maybe a week basking in the glory of finally becoming a college graduate. Instead I spent Monday feeling scared and crying, having miniature pity-parties saying, "Why me? Why me again?"
The good news: after they cut the melanoma out they ruled me practically stage zero - the cancer was mostly contained to the tumor site (on top of my head! like on my scalp, hiding in my hair!!) though he missed a little on the edges and has to go back and cut out more. blech. But in my doctor's opinion the chance of this melanoma having spread anywhere else in my body is less than 2%. I like those odds. I meet with the oncology surgeon June 1 and then we will schedule the rest of the cutting and a biopsy of my lymph nodes to be 100% sure I don't have mean, nasty cancer cells anywhere else. I have about 6 or so stitches in my scalp, but he pulled my hairline back together nicely so I'm not bald or anything. Though it did change my natural part a bit (you ladies understand!) so that will take some getting used to. I've been wearing a lot of scarves to cover up the stitches until they come out.
I probably sound braver than I actually am.
If I think about it all too much, I completely shut down and I don't wanna leave the house, or answer my phone or read my emails, and that's not healthy. If I have learned anything from MS it's that you need help from people to get through any major crisis, whether its physical help, emotional support or just knowing there are people there that have your back when you need them.
But I'm sad, scared and angry all at once. My post-graduation plans did not include "Get Cancer." And the fact that I do have MS just complicates matters tenfold. So now my doctors are going to have to all talk to each other and figure out what's the best plan for my current/future treatments and that scares the crap outta me too. The next couple weeks aren't going to be fun, but I really truly believe that somehow it is going to work out alright.
So I just have to move forward, one day at a time, holding my breath a little until we know for sure what all we're dealing with and what this will mean for my future. Nevertheless, MS Girl will now be taking on the world as a college grad, which only makes me that much more of a badass. :-)
XOXO
Saturday, May 8th was one of those perfect days. The weather cooperated, so many people got up early to see me graduate, others celebrated with me afterwards. I felt so happy, proud and loved and it truly was perfect in every way.
Though from there things began to get a little more interesting and less 'perfect.' The weekend went something like this:
Saturday: I graduate from college! Summa cum laude!! I celebrate with my family and close friends. (And thanks for all the cards you have sent!! My kitchen cabinets are completely covered. It's beautiful. I will have to post a picture!)Sunday: Stay in my pajamas all day to rest and recover from the excitement of Saturday.
Monday: I wake up feeling good, ready to face the world as a college-grad, and then the doctor calls to inform me I have skin cancer. To be precise, I have melanoma.
I'm sorry. What?!?? Did you call the wrong patient or something? I'm MS Girl...I'm not Cancer Girl! That will require a totally different cape and costume, not to mention I don't have time or energy for all new sets of fundraisers!! (by the way, Team Wearing Red Shoes has raised over $19,500 making us the top fundraising team in the entire state of Georgia for 2010!)
Meanwhile, I am so proud of my accomplishment, of reaching this goal that has taken me over a decade and many hurdles to complete, and I just wanted to spend a day or maybe a week basking in the glory of finally becoming a college graduate. Instead I spent Monday feeling scared and crying, having miniature pity-parties saying, "Why me? Why me again?"
The good news: after they cut the melanoma out they ruled me practically stage zero - the cancer was mostly contained to the tumor site (on top of my head! like on my scalp, hiding in my hair!!) though he missed a little on the edges and has to go back and cut out more. blech. But in my doctor's opinion the chance of this melanoma having spread anywhere else in my body is less than 2%. I like those odds. I meet with the oncology surgeon June 1 and then we will schedule the rest of the cutting and a biopsy of my lymph nodes to be 100% sure I don't have mean, nasty cancer cells anywhere else. I have about 6 or so stitches in my scalp, but he pulled my hairline back together nicely so I'm not bald or anything. Though it did change my natural part a bit (you ladies understand!) so that will take some getting used to. I've been wearing a lot of scarves to cover up the stitches until they come out.
I probably sound braver than I actually am.
If I think about it all too much, I completely shut down and I don't wanna leave the house, or answer my phone or read my emails, and that's not healthy. If I have learned anything from MS it's that you need help from people to get through any major crisis, whether its physical help, emotional support or just knowing there are people there that have your back when you need them.
But I'm sad, scared and angry all at once. My post-graduation plans did not include "Get Cancer." And the fact that I do have MS just complicates matters tenfold. So now my doctors are going to have to all talk to each other and figure out what's the best plan for my current/future treatments and that scares the crap outta me too. The next couple weeks aren't going to be fun, but I really truly believe that somehow it is going to work out alright.
So I just have to move forward, one day at a time, holding my breath a little until we know for sure what all we're dealing with and what this will mean for my future. Nevertheless, MS Girl will now be taking on the world as a college grad, which only makes me that much more of a badass. :-)
XOXO
Friday, May 7, 2010
Awards Ceremony
I had forgotten how at the end of the school year, particularly the end of your senior year they have Awards Day and Senior Honors Day. Well, at least Oglethorpe does and as I sat in our theater (and even watched my bff Angela win an award for being so brilliant in Sociology!) I thought about how my own college awards ceremony might go....
To the people who spent the most time and their precious fuel driving me to/from doctor appointments, so that I could save my energy for my schoolwork and classes, I give the Chaffeurs of the Year Awards to: Alice Nanda (with help from her sons Louis and Adam) and my Aunt Eileen 'Louie' Mengert.
For stocking our fridge with food when I was too sick to go grocery shopping over the past 2 years we present Shopper Extraordinaire Awards to Karen & Courtney Holder and my in-laws Barbara Faga & Paul Kulinski.
For leaving her job to pick me up at school when I found myself without a ride home (more than once!), the Search & Rescue Award goes to Beth Dieterich.
For helping me type papers when my left hand gave out on me (and learning more about Shakespeare's fools than she ever thought possible) the Helping Hands Award goes to "Lightning-Hands" Lyn Marcrum.
For their unfailing willingness to do whatever we needed whenever we needed, be it drive, cook, shop or have ginger molasses cookies on my doorstep even before the IV nurse arrived the Jacks of All Trades Award goes to Tiffany & Steven Wisener.
To the person who sadly got laid off from her job, but instead of settling in for a pity-party and Oprah-watching, called up her sister-in-law and said, "Hey, I just lost my job, so what can I do to help you? Drive? Shop? Type? Cook?" And during the toughest 6 months of my life she did all that and more. The Service Above Self Award goes to my sister-in-law Betsey Kulinski.
Within 2 hours of notifying my friends and family that I had lost the use of one arm and gained a sassy cane named Greg, this generous friend offered and spent every Friday afternoon for months doing whatever I needed help with. She typed papers, did dishes, baked cookies, made placecards, took me to Ikea and set up our entire dining room set for us. The Macguyver Service Award goes to my friend Bethany Okie.
For teaching me everything I know about theater that is worth knowing and for asking for my input and whatever expertise I might have had on his own productions. For inspiring me to go back and finish my degree so that I might someday pursue my love for educational theater, the Inspiration Award to my stepdad George Mengert.
For paying for Pace and for my first 2 years at CCM and for navigating every aspect of my medical journey with me, taking my frantic midnight phone calls, fighting for me with my insurance company and with my doctors, all so that I could stay in school and accomplish my goals: the Advocate and Support Award to my parents Larry & Sheryl Clements.
For choosing that 9am Sociology class in the fall of 2008, for driving me to countless doctor appts, sitting with me during infusions, helping type my papers, doing my dishes, folding my laundry, the list goes on. But most of all for keeping me sane with her encouraging, calming presence and always wise advice. To my 'mini-me' and partner-in-crime, the All-Around Support Award to Angela DeGroat.
She has easily driven half a million miles in order to advance my education and talents and she has worked behind the scenes for 30+ years, quietly helping me to put the pieces of my life back together every time they fell apart, so that even in the midst of great hardships I would never lose sight of who I was. When I was diagnosed with JRA at age 6, desperate to be a ballerina, she pleaded with and convinced Ruth Mitchell to allow me to keep on dancing. When CCM became too much for me and I returned home, she was the one who 'subtly' sent me the audition notice for the Atlanta Symphony Orchestra Chorus so that I would keep on singing. No matter the hurdle, she has helped me to "keep on keepin' on." The Biggest Fan & Cheerleader Award goes to my mom, Annette Mengert.
Finally, for living with a full-time college student and not strangling me every time I stressed out over an exam or was too hard on myself about a paper. For being supportive of my decision to go back to school even when it meant seeing less of me and seeing less money in our bank account. For being understanding about what a perfectionist I am and trying to get me to dial it from an 11 down to an 8. For putting all my papers and exams on the fridge no matter what the grade. For encouraging me when I was scared, and telling me time and time again how proud he was of me for making this decision and seeing it through, the Better Half Award to my husband, Chris.
All of you and so many more have made it possible for me to reach this point: hours away from being a college graduate. I couldn't have done it without you.
(And even if I could have, I wouldn't have wanted to.)
As my dear friend Dorothy says: "You're the best friends anybody ever had."
Thank you for helping me to join the graduating class of 2010!
XOXO
Caroline
To the people who spent the most time and their precious fuel driving me to/from doctor appointments, so that I could save my energy for my schoolwork and classes, I give the Chaffeurs of the Year Awards to: Alice Nanda (with help from her sons Louis and Adam) and my Aunt Eileen 'Louie' Mengert.
For stocking our fridge with food when I was too sick to go grocery shopping over the past 2 years we present Shopper Extraordinaire Awards to Karen & Courtney Holder and my in-laws Barbara Faga & Paul Kulinski.
For leaving her job to pick me up at school when I found myself without a ride home (more than once!), the Search & Rescue Award goes to Beth Dieterich.
For helping me type papers when my left hand gave out on me (and learning more about Shakespeare's fools than she ever thought possible) the Helping Hands Award goes to "Lightning-Hands" Lyn Marcrum.
For their unfailing willingness to do whatever we needed whenever we needed, be it drive, cook, shop or have ginger molasses cookies on my doorstep even before the IV nurse arrived the Jacks of All Trades Award goes to Tiffany & Steven Wisener.
To the person who sadly got laid off from her job, but instead of settling in for a pity-party and Oprah-watching, called up her sister-in-law and said, "Hey, I just lost my job, so what can I do to help you? Drive? Shop? Type? Cook?" And during the toughest 6 months of my life she did all that and more. The Service Above Self Award goes to my sister-in-law Betsey Kulinski.
Within 2 hours of notifying my friends and family that I had lost the use of one arm and gained a sassy cane named Greg, this generous friend offered and spent every Friday afternoon for months doing whatever I needed help with. She typed papers, did dishes, baked cookies, made placecards, took me to Ikea and set up our entire dining room set for us. The Macguyver Service Award goes to my friend Bethany Okie.
For teaching me everything I know about theater that is worth knowing and for asking for my input and whatever expertise I might have had on his own productions. For inspiring me to go back and finish my degree so that I might someday pursue my love for educational theater, the Inspiration Award to my stepdad George Mengert.
For paying for Pace and for my first 2 years at CCM and for navigating every aspect of my medical journey with me, taking my frantic midnight phone calls, fighting for me with my insurance company and with my doctors, all so that I could stay in school and accomplish my goals: the Advocate and Support Award to my parents Larry & Sheryl Clements.
For choosing that 9am Sociology class in the fall of 2008, for driving me to countless doctor appts, sitting with me during infusions, helping type my papers, doing my dishes, folding my laundry, the list goes on. But most of all for keeping me sane with her encouraging, calming presence and always wise advice. To my 'mini-me' and partner-in-crime, the All-Around Support Award to Angela DeGroat.
She has easily driven half a million miles in order to advance my education and talents and she has worked behind the scenes for 30+ years, quietly helping me to put the pieces of my life back together every time they fell apart, so that even in the midst of great hardships I would never lose sight of who I was. When I was diagnosed with JRA at age 6, desperate to be a ballerina, she pleaded with and convinced Ruth Mitchell to allow me to keep on dancing. When CCM became too much for me and I returned home, she was the one who 'subtly' sent me the audition notice for the Atlanta Symphony Orchestra Chorus so that I would keep on singing. No matter the hurdle, she has helped me to "keep on keepin' on." The Biggest Fan & Cheerleader Award goes to my mom, Annette Mengert.
Finally, for living with a full-time college student and not strangling me every time I stressed out over an exam or was too hard on myself about a paper. For being supportive of my decision to go back to school even when it meant seeing less of me and seeing less money in our bank account. For being understanding about what a perfectionist I am and trying to get me to dial it from an 11 down to an 8. For putting all my papers and exams on the fridge no matter what the grade. For encouraging me when I was scared, and telling me time and time again how proud he was of me for making this decision and seeing it through, the Better Half Award to my husband, Chris.
All of you and so many more have made it possible for me to reach this point: hours away from being a college graduate. I couldn't have done it without you.
(And even if I could have, I wouldn't have wanted to.)
As my dear friend Dorothy says: "You're the best friends anybody ever had."
Thank you for helping me to join the graduating class of 2010!
XOXO
Caroline
Wednesday, April 21, 2010
Still Here
No, I haven't disappeared....or rather I have, but only into the hole known as "Last Semester of My Senior Year of College." I thought your last semester was all frat parties and skipping class, alas I was wrong and in the 3 weeks before my last exam I found myself with a total of 6 papers, 4 exams and 1 oral presentation due...all within 3 weeks.
As of today I have 2 more papers, 3 more exams and the presentation between now and May 3rd...and then...I will be a college graduate!!! Only a few years ago I swore up and down I would never go back (never say never, right?) and now here I am. I even managed a 4.0 last semester with Greg in tow and only one working hand (and lots of help from my 'Helping Hands' - you know who you are!)
Alright, I only allowed myself this brief break from Paper 5 of 6 (sounds like a Star Trek character, right Dad?) and now I must return and eventually call it a night. So I am off the radar until after May 8 (Graduation Day!) and then the very next weekend is WalkMS Atlanta on May 15. If you haven't signed up already, we would love for you to join us. The more the merrier (Red Shoe World Domination!!!!)
http://nationalmssociety.org/goto/wearingredshoes
XOXO
As of today I have 2 more papers, 3 more exams and the presentation between now and May 3rd...and then...I will be a college graduate!!! Only a few years ago I swore up and down I would never go back (never say never, right?) and now here I am. I even managed a 4.0 last semester with Greg in tow and only one working hand (and lots of help from my 'Helping Hands' - you know who you are!)
Alright, I only allowed myself this brief break from Paper 5 of 6 (sounds like a Star Trek character, right Dad?) and now I must return and eventually call it a night. So I am off the radar until after May 8 (Graduation Day!) and then the very next weekend is WalkMS Atlanta on May 15. If you haven't signed up already, we would love for you to join us. The more the merrier (Red Shoe World Domination!!!!)
http://nationalmssociety.org/goto/wearingredshoes
XOXO
Sunday, March 14, 2010
It's the Most Wonderful Time of the Year
No, I am not talking about Christmas, though Christmas-time is nice and all...I am talking about Red Shoe Season!!!! The time of year when I somehow convince all of my family and friends (and occasionally perfect strangers) to put on red shoes and raise some $$ to fight the MonSter.
Team Wearing Red Shoes is back for its 3rd year in a row and we are gonna be bigger and badder than ever (and by badder I mean more Fabulous, of course) as we take over Piedmont Park on Saturday, May 15th for WalkMS 2010.
Put on some red shoes and join us, or if you can't be with us on May 15th we hope you will support us by making a donation. Any amount is greatly appreciated!
Our team page: http://nationalmssociety.org/goto/wearingredshoes
Hope you can join us on Saturday, May 15th. It's an amazing event filled with hope for a world free of MS...not to mention 50+ pairs of red shoes!
XOXO
Team Wearing Red Shoes is back for its 3rd year in a row and we are gonna be bigger and badder than ever (and by badder I mean more Fabulous, of course) as we take over Piedmont Park on Saturday, May 15th for WalkMS 2010.
Put on some red shoes and join us, or if you can't be with us on May 15th we hope you will support us by making a donation. Any amount is greatly appreciated!
Our team page: http://nationalmssociety.org/goto/wearingredshoes
Hope you can join us on Saturday, May 15th. It's an amazing event filled with hope for a world free of MS...not to mention 50+ pairs of red shoes!
XOXO
Friday, February 12, 2010
The Other Shoe
The longer I live with the MonSter on my back, the more I am shocked, surprised, even slapped in the face to learn that everyone's case of MS is soooo different. No wonder scientists have been unable to find a cure and have trouble coming up with treatments! The darn thing looks completely different on everyone!
Plenty of us show no outward appearance of the disease, while others have quite a hard time hiding their symptoms. Some people are diagnosed and then go years before having another relapse...some MSers never have another relapse. They take their injections, and go about their life with symptoms, but no relapses, no new lesions or inflammation, no disease-progression. It is pretty awesome that drugs exist (known as Disease-Modifying-Drugs, or DMDs) that help so many people to live life as normally as possible. And it is wonderful that these drugs work and these people can go years without the stress, pain, hassle and fears that come with a new relapse. I know many of these people – doing well, clean MRIs, "stable" and I am really happy for them.
I also totally hate their guts.
Okay, hate is a strong word (thanks, Mom, for hammering that into my brain as a child). I don't hate them. I just sometimes want to punch them in the face. No! That’s not right either. It’s jealousy. Plain and simple jealousy. I want to BE these people. I want the drug that works. The one that I shoot into my leg or arm every day and the one that keeps the MonSter quiet for longer than three months at a time.
So in October, two months into my Relapse from Hell, Greg and I had become best friends, completely inseparable and I had lost 80-90% function of my left hand, not to mention 100% feeling in it, with numbness and pain elsewhere too. I was a mess. Well, it turned out my brain looked even messier than I did and my October MRI was so full of lesions and inflammation it looked like a damn LiteBrite on the films. This worried my neurologist so much he called me at home right after he read my MRI. He also told me to start considering going onto a new drug called Tysabri.
Tysabri has a love/hate relationship in the MS world. People love it because it works for a lot of people - it gives them function back. It takes pain away. It is only given once a month via IV infusion. No shots Every Day! People hate it because it comes with some risk factors. Okay, actually it’s just one major, MAJOR risk of developing a crazy rare brain infection called PML (the acronym for Progressive + 2 other words that require a medical degree just to pronounce!!). PML has been known to cause severe disability, even death. I did plenty of research on Tysabri and PML, as did my team of doctors, and the risk for developing PML is less than .05%. Plus no one has ever contracted PML in their first year on Tysabri, so first 12 months are like a free pass.
This week just finished infusion #5, so I am four months into my 12-month grace period. Greg and I "broke up" shortly before Xmas. (My family then all tells me they "never really liked him anyway!" hahaha) AND...I am typing this to you with BOTH hands. Slowly, I am playing piano again (though I had to get out my easier piano books and "reteach" Lefty how to play. It’s amazing how the brain works and that you can reconnect neural pathways that weren’t talking to one another! And my MRI done in January showed that all the inflammation I had in October was gone and I had no new activity or lesions. My brain is no longer swollen!!! Yippee!
So obviously Tysabri is working. And I am SO incredibly grateful.
I am optimistic and hopeful for the first time in a long time.
So why then is there this little voice in my head saying, "Oh puh-lease. This won't last. You won't feel good for very long. It's only a matter of time. I mean, hul-lo?? Your MS track record ain't so good, babe. Keep dreamin’ that this drug (your third in less than three years) is actually going to work. "
I hear this annoying voice and I realize that part of me is waiting for the other shoe to drop. I am not just optimistic. I am trepidatiously optimistic. (I realize that may not be a word, but I like it, so I’m keeping it).
And I find I am rather annoyed at myself for feeling this way.
Then I remember that I sort of have a right to feel this way, to some degree. I mean, in my first two years with MS, I relapsed SIX times. Which is more than three times the average for most folks with MS. I always knew I was special! Ha.
Seriously, though, relapsing has become a way of life for me:
I relapse. I let my family know. Our Moms bring food and make sure our fridge is stocked. I email our friends and by the time I am hooked up to IV steroids, Tiffany has already baked a batch of her famous ginger-molasses cookies and delivered them (or sent Steven over with them) because they knew that is the only thing we have ever found that gets rid of the awful metallic taste I get in my mouth from 3 days of Solu-Medrol. Chris works from home more to help take care of me. Angela drives me to the classes I feel up to going to. Alice, my mom and my aunt Eileen drive me to my doctor’s appointments. People come help me fold laundry or type my papers for school. When we go out in public, my friends offer me arms and hands to hold onto because they know I am unsteady. After almost three years, all of this has become almost second nature.
But in the past two months I have slowly started to feel like a real, whole person again. If you count August as my official last relapse-start-date, then this, right now, is the longest I have ever gone without a relapse. < knock wood > And so of course I am looking around for that "other shoe." It might be any day now...next week! Or it will probably be over my spring break since Chris and I are planning to go out of town. Or it will come during finals week. Any second now....BOOM! I won't be able to walk or Lefty will give out again and I'll be back to needing help tying my shoes or...or...
I could go on forever worrying about what might go wrong, where in my body it might go wrong, how much it is going to hurt and when it is going to happen. But it is completely unhelpful because Right Now I am not relapsing and my MRI was clean and my left hand is working and I don’t need my cane anymore. The pain is manageable and I don’t feel as overall terrible as I did from August through December.
Sometimes it just feels like a bad dream that I had. And I have woken up and I feel okay, and I can type again and play Oscar when I want to, and I am a Senior in my final semester about to finish my undergraduate degree! And I love my house and I am married to a wonderful man and I have the best family and friends of anyone in the whole world and Right Now I am going to appreciate my body and all the things it can do for me Today.
As much as I would LOVE to know what will happen tomorrow (and then plan accordingly for it, of course!), I just can't. No one can. I am wasting precious energy (aka Spoons) worrying about the Ifs and Whats and Whens and Hows. I am going to try as hard as I possibly can to just enjoy Today, to be present in whatever I am doing, to try not to worry so much and to hold on for dear life to my Optimism.
Meanwhile, I am going to tell the Trepidation to find somebody else's shoes to mess with. Both of MY red shoes will be staying tightly on my feet, thank you very much.
Plenty of us show no outward appearance of the disease, while others have quite a hard time hiding their symptoms. Some people are diagnosed and then go years before having another relapse...some MSers never have another relapse. They take their injections, and go about their life with symptoms, but no relapses, no new lesions or inflammation, no disease-progression. It is pretty awesome that drugs exist (known as Disease-Modifying-Drugs, or DMDs) that help so many people to live life as normally as possible. And it is wonderful that these drugs work and these people can go years without the stress, pain, hassle and fears that come with a new relapse. I know many of these people – doing well, clean MRIs, "stable" and I am really happy for them.
I also totally hate their guts.
Okay, hate is a strong word (thanks, Mom, for hammering that into my brain as a child). I don't hate them. I just sometimes want to punch them in the face. No! That’s not right either. It’s jealousy. Plain and simple jealousy. I want to BE these people. I want the drug that works. The one that I shoot into my leg or arm every day and the one that keeps the MonSter quiet for longer than three months at a time.
So in October, two months into my Relapse from Hell, Greg and I had become best friends, completely inseparable and I had lost 80-90% function of my left hand, not to mention 100% feeling in it, with numbness and pain elsewhere too. I was a mess. Well, it turned out my brain looked even messier than I did and my October MRI was so full of lesions and inflammation it looked like a damn LiteBrite on the films. This worried my neurologist so much he called me at home right after he read my MRI. He also told me to start considering going onto a new drug called Tysabri.
Tysabri has a love/hate relationship in the MS world. People love it because it works for a lot of people - it gives them function back. It takes pain away. It is only given once a month via IV infusion. No shots Every Day! People hate it because it comes with some risk factors. Okay, actually it’s just one major, MAJOR risk of developing a crazy rare brain infection called PML (the acronym for Progressive + 2 other words that require a medical degree just to pronounce!!). PML has been known to cause severe disability, even death. I did plenty of research on Tysabri and PML, as did my team of doctors, and the risk for developing PML is less than .05%. Plus no one has ever contracted PML in their first year on Tysabri, so first 12 months are like a free pass.
This week just finished infusion #5, so I am four months into my 12-month grace period. Greg and I "broke up" shortly before Xmas. (My family then all tells me they "never really liked him anyway!" hahaha) AND...I am typing this to you with BOTH hands. Slowly, I am playing piano again (though I had to get out my easier piano books and "reteach" Lefty how to play. It’s amazing how the brain works and that you can reconnect neural pathways that weren’t talking to one another! And my MRI done in January showed that all the inflammation I had in October was gone and I had no new activity or lesions. My brain is no longer swollen!!! Yippee!
So obviously Tysabri is working. And I am SO incredibly grateful.
I am optimistic and hopeful for the first time in a long time.
So why then is there this little voice in my head saying, "Oh puh-lease. This won't last. You won't feel good for very long. It's only a matter of time. I mean, hul-lo?? Your MS track record ain't so good, babe. Keep dreamin’ that this drug (your third in less than three years) is actually going to work. "
I hear this annoying voice and I realize that part of me is waiting for the other shoe to drop. I am not just optimistic. I am trepidatiously optimistic. (I realize that may not be a word, but I like it, so I’m keeping it).
And I find I am rather annoyed at myself for feeling this way.
Then I remember that I sort of have a right to feel this way, to some degree. I mean, in my first two years with MS, I relapsed SIX times. Which is more than three times the average for most folks with MS. I always knew I was special! Ha.
Seriously, though, relapsing has become a way of life for me:
I relapse. I let my family know. Our Moms bring food and make sure our fridge is stocked. I email our friends and by the time I am hooked up to IV steroids, Tiffany has already baked a batch of her famous ginger-molasses cookies and delivered them (or sent Steven over with them) because they knew that is the only thing we have ever found that gets rid of the awful metallic taste I get in my mouth from 3 days of Solu-Medrol. Chris works from home more to help take care of me. Angela drives me to the classes I feel up to going to. Alice, my mom and my aunt Eileen drive me to my doctor’s appointments. People come help me fold laundry or type my papers for school. When we go out in public, my friends offer me arms and hands to hold onto because they know I am unsteady. After almost three years, all of this has become almost second nature.
But in the past two months I have slowly started to feel like a real, whole person again. If you count August as my official last relapse-start-date, then this, right now, is the longest I have ever gone without a relapse. < knock wood > And so of course I am looking around for that "other shoe." It might be any day now...next week! Or it will probably be over my spring break since Chris and I are planning to go out of town. Or it will come during finals week. Any second now....BOOM! I won't be able to walk or Lefty will give out again and I'll be back to needing help tying my shoes or...or...
I could go on forever worrying about what might go wrong, where in my body it might go wrong, how much it is going to hurt and when it is going to happen. But it is completely unhelpful because Right Now I am not relapsing and my MRI was clean and my left hand is working and I don’t need my cane anymore. The pain is manageable and I don’t feel as overall terrible as I did from August through December.
Sometimes it just feels like a bad dream that I had. And I have woken up and I feel okay, and I can type again and play Oscar when I want to, and I am a Senior in my final semester about to finish my undergraduate degree! And I love my house and I am married to a wonderful man and I have the best family and friends of anyone in the whole world and Right Now I am going to appreciate my body and all the things it can do for me Today.
As much as I would LOVE to know what will happen tomorrow (and then plan accordingly for it, of course!), I just can't. No one can. I am wasting precious energy (aka Spoons) worrying about the Ifs and Whats and Whens and Hows. I am going to try as hard as I possibly can to just enjoy Today, to be present in whatever I am doing, to try not to worry so much and to hold on for dear life to my Optimism.
Meanwhile, I am going to tell the Trepidation to find somebody else's shoes to mess with. Both of MY red shoes will be staying tightly on my feet, thank you very much.
Wednesday, December 2, 2009
"Everything Happens For A Reason"
I've always been somewhat ambivalent towards clichéd phrases. On one hand, I like them. They get across your point, without having to explain it in great detail. On the other hand, they sometimes seem very trite, because unfortunately, a vast majority of clichéd phrases are used when times are tough.
I believe in fate, yet this phrase can come across as a five letter way of telling someone that the crap they are dealing with is really part of some big master plan. But when people are dealing with crap, hearing that phrase doesn't always help them.
Fate must have known my ambivalence towards this phrase, as it has recently been throwing it in my face, and I have just had to laugh at how strangely true it has become. I'm certain that I do not yet know all of the reasons that I was given this disease, but a few have been making themselves known lately.
If you know me, you know I love quotes which also includes song lyrics and lately this song keeps swimming through my head:
Half of learning how to play
is learning what not to play.
And she's learning the spaces she leaves
have their own things to say.
And she's trying to sing just enough
so that the air around her moves.
And make music like mercy
that gives what it is
and has nothing to prove.
She crawls out on a limb
and begins to build her home.
And it's enough just to look around
to know she's not alone.
I believe in fate, yet this phrase can come across as a five letter way of telling someone that the crap they are dealing with is really part of some big master plan. But when people are dealing with crap, hearing that phrase doesn't always help them.
Fate must have known my ambivalence towards this phrase, as it has recently been throwing it in my face, and I have just had to laugh at how strangely true it has become. I'm certain that I do not yet know all of the reasons that I was given this disease, but a few have been making themselves known lately.
If you know me, you know I love quotes which also includes song lyrics and lately this song keeps swimming through my head:
Half of learning how to play
is learning what not to play.
And she's learning the spaces she leaves
have their own things to say.
And she's trying to sing just enough
so that the air around her moves.
And make music like mercy
that gives what it is
and has nothing to prove.
She crawls out on a limb
and begins to build her home.
And it's enough just to look around
to know she's not alone.
- Ani Difranco
If I was the tattooing type of person I would probably tattoo these the phrases somewhere on myself right now. They remind me that, regardless of MS, we all have to learn at some point in our lives to Slow Down. Sadly, none of us is immune to aging, and it has a funny way of creeping up on you and forcing you to take a different pace. Until the MonSter entered my life, I wa always busy - working at my regular job, teaching kids to sing and dance in my spare time, there was always a bridal shower or a baby shower to throw or attend, or a wedding to sing at, our huge family and many friends to socialize with... I was overbooked and overextended yet somehow I never minded because I had boundless energy to do the many things I loved, the many things that made me Caroline.
I've been forced to learn a life lesson, perhaps too early, but an important lesson nonetheless. Sometimes life is about learning what NOT to do, "what NOT to play"... Not about stopping, certainly not about giving up, but about "trying to sing just enough", finding the joy in doing less and yet knowing you are the same person you have always been regardless of what you don't accomplish or do accomplish.
It's why I love that phrase "crawl out on a limb" because somehow it encompasses the idea of reinventing one's self. I think there are few things more frightening than the thought of shedding the skin of who you were in order to become who you want to be. Change is really, really scary. Giving up my busy, busy life, my many activities and many of the things I love in order to accept my current limitations and to accept who I need to be right now has been both terrifying and extremely humbling. But in it I have found new things I love, different types of joy, and the unbelievable power that lies in allowing yourself to be weak, even vulnerable - both words I previously detested, but have grown to realize are actually crucial in order to grow, in order to become the the best possible version of yourself.
Having bad balance, an uncooperative and rebellious left hand, terrible brain mud, pain, spasticity, dizziness, numbness and unfathomable fatigue have all but forced me (even though I am extremely stubborn) to ask for more help with more things than I ever thought imaginable. The stubbornness, the pride-swallowing, the fear of rejection, the fear of burdening those I love have all been met with nothing but open arms and willing hands. I've discovered arms I never knew were open. I've learned that sometimes allowing yourself to be vulnerable gives other people permission to be vulnerable with you, and it is in that space that real friendship grows.
I believe now that I needed to slow down. I believe that I was meant to go back to school and earn my college degree and that fate led me to Oglethorpe and to meeting people there that have filled my soul with joy. I believe that it's on purpose I'm struggling so much right now, because it has allowed me to reconnect with old friends, forge relationships with new ones, and become closer to people I never knew how much I truly needed until now.
And I guess that's the point. It's not about what I do or don't do. It's about just being, about who I want to be, about who I am when I'm with the people I love that love me.
I'm still learning and I'm still terrified and I'm still struggling. But some days it's enough just to look around and to know that I'm not alone.
If I was the tattooing type of person I would probably tattoo these the phrases somewhere on myself right now. They remind me that, regardless of MS, we all have to learn at some point in our lives to Slow Down. Sadly, none of us is immune to aging, and it has a funny way of creeping up on you and forcing you to take a different pace. Until the MonSter entered my life, I wa always busy - working at my regular job, teaching kids to sing and dance in my spare time, there was always a bridal shower or a baby shower to throw or attend, or a wedding to sing at, our huge family and many friends to socialize with... I was overbooked and overextended yet somehow I never minded because I had boundless energy to do the many things I loved, the many things that made me Caroline.
I've been forced to learn a life lesson, perhaps too early, but an important lesson nonetheless. Sometimes life is about learning what NOT to do, "what NOT to play"... Not about stopping, certainly not about giving up, but about "trying to sing just enough", finding the joy in doing less and yet knowing you are the same person you have always been regardless of what you don't accomplish or do accomplish.
It's why I love that phrase "crawl out on a limb" because somehow it encompasses the idea of reinventing one's self. I think there are few things more frightening than the thought of shedding the skin of who you were in order to become who you want to be. Change is really, really scary. Giving up my busy, busy life, my many activities and many of the things I love in order to accept my current limitations and to accept who I need to be right now has been both terrifying and extremely humbling. But in it I have found new things I love, different types of joy, and the unbelievable power that lies in allowing yourself to be weak, even vulnerable - both words I previously detested, but have grown to realize are actually crucial in order to grow, in order to become the the best possible version of yourself.
Having bad balance, an uncooperative and rebellious left hand, terrible brain mud, pain, spasticity, dizziness, numbness and unfathomable fatigue have all but forced me (even though I am extremely stubborn) to ask for more help with more things than I ever thought imaginable. The stubbornness, the pride-swallowing, the fear of rejection, the fear of burdening those I love have all been met with nothing but open arms and willing hands. I've discovered arms I never knew were open. I've learned that sometimes allowing yourself to be vulnerable gives other people permission to be vulnerable with you, and it is in that space that real friendship grows.
I believe now that I needed to slow down. I believe that I was meant to go back to school and earn my college degree and that fate led me to Oglethorpe and to meeting people there that have filled my soul with joy. I believe that it's on purpose I'm struggling so much right now, because it has allowed me to reconnect with old friends, forge relationships with new ones, and become closer to people I never knew how much I truly needed until now.
And I guess that's the point. It's not about what I do or don't do. It's about just being, about who I want to be, about who I am when I'm with the people I love that love me.
I'm still learning and I'm still terrified and I'm still struggling. But some days it's enough just to look around and to know that I'm not alone.
Friday, September 25, 2009
Princess Caroline Marches On
it has been a pretty rough week here in the kulinski household. i have spent 4+ hours a day for the past 5 days at shepherd center receiving my ivig infusion which is our plan b attempt at ending this relapse. you usually don't see results until 5-7 days after the infusion ends, so next week will hopefully make up for this horrible week with some improvement in my symptoms. i have continued getting worse this week and it is rather scary and highly frustrating.
you may have noticed my sudden disregard for capital letters? in addition to the lower half of my body staging a coup, my left hand joined the dark side this week as well. typing on a keyboard, playing piano, and attempting to hold anything with my left hand has become nearly impossible. i still have some control over my thumb and pointer finger. the other three are living on some alien planet and refuse to do anything i tell them. talk about twilight zone! imagine if you will, writing an email and suddenly your left pinkie simply will not hit that shift key. no matter what you do, it rudely ignores you. so until further notice you may notice this absence of caps. it is going to make this semster at school rather interesting if this continues. i am a touch typer. i type well and quickly. ahem, i used to touch type. when your left hand is completely numb and 3 out of 10 finger aren't working, it severely diminishes your typing speed. i may have to start dictating emails, blog posts and schoolwork to someone willing to type for me!
don't even talk to me about how upset i am over not being able to play piano right now. i have always run to my piano when i am happy, sad, angry or scared. not being able to play right now feels like someone just went ahead and choppeed my whole arm off. i just have to believe that this will get better and whatever this is, it isn't permanent.
in the midst of such an awful week, i had a lot of cheerleaders. i don't know how people survive things like this without cheerleaders and i am lucky to have so many. by the time the week ended, the shepherd nurses were saying i had "an entourage"!! many many thanks go out to the chauffeurs and visitors who helped me pass the time while hooked up to tubes: my friend bethany spent monday morning with me, chris spent all day tuesday with me, alice (and her adorable boys, louis & adam) drove me and took me to chickfila on wed, thursday my sister-in-law betsey spent all day with me, helped me by typing while i dictated a paper outline to her, drove me to lunch and stayed and watched a movie with me. my mom was with me all day today, brought me lunch and yummy treats and made the time fly by.
if the entourage wasn't enough, my phone rang endlessly off the hook with people calling to check in, offering to help, or just leave me a nice voicemail to brighten my day: thanks barbara, dad, sheryl, van, uncle jim, beth, angela, karen, grandmother, granddaddy & george. tiffany & steven brought over goodies and kimmy brought dinner and did all my laundry for me. (it is surprising hard to fold clothes when one hand isn't working!)
i am truly blessed to have so very many people who care about me. i don't know what i did to deserve them all.
also the nurses and staff at shepherd are so incredible to me. they take such good care of me and even find ways to add fun into an otherwise dreadful experience. on wednesday, they appointed me "princess caroline" for the day and gave me a tiara to wear. i was the only patient lucky enough to be in the infusion room every single day, so it earned me that royal title!
i am relieved this week is over. i am trying to remain hopeful for the week(s) to come. i just wanna get back to school, get back to some sense of normalcy, even if my body is feeling quite far from normal. i missed the majority of my classes this week. all my professors were 100% understanding but i hate missing so much school. not only for fear of getting behind, but because school has become another happy place. when i am on campus, evwn with greg, i am just another normal student trying to get an education. i love being there. it fills my soul with joy. and i need as much joy as i can get right now!
keep your fingers crossed, say a prayer, do a dance, say a chant...whatever you think might help this medicine to work and finally end this relapse-from-hell. october is one of my favorite months and i would prefer to enjoy it relapse-free and feeling better.
XOXO
you may have noticed my sudden disregard for capital letters? in addition to the lower half of my body staging a coup, my left hand joined the dark side this week as well. typing on a keyboard, playing piano, and attempting to hold anything with my left hand has become nearly impossible. i still have some control over my thumb and pointer finger. the other three are living on some alien planet and refuse to do anything i tell them. talk about twilight zone! imagine if you will, writing an email and suddenly your left pinkie simply will not hit that shift key. no matter what you do, it rudely ignores you. so until further notice you may notice this absence of caps. it is going to make this semster at school rather interesting if this continues. i am a touch typer. i type well and quickly. ahem, i used to touch type. when your left hand is completely numb and 3 out of 10 finger aren't working, it severely diminishes your typing speed. i may have to start dictating emails, blog posts and schoolwork to someone willing to type for me!
don't even talk to me about how upset i am over not being able to play piano right now. i have always run to my piano when i am happy, sad, angry or scared. not being able to play right now feels like someone just went ahead and choppeed my whole arm off. i just have to believe that this will get better and whatever this is, it isn't permanent.
in the midst of such an awful week, i had a lot of cheerleaders. i don't know how people survive things like this without cheerleaders and i am lucky to have so many. by the time the week ended, the shepherd nurses were saying i had "an entourage"!! many many thanks go out to the chauffeurs and visitors who helped me pass the time while hooked up to tubes: my friend bethany spent monday morning with me, chris spent all day tuesday with me, alice (and her adorable boys, louis & adam) drove me and took me to chickfila on wed, thursday my sister-in-law betsey spent all day with me, helped me by typing while i dictated a paper outline to her, drove me to lunch and stayed and watched a movie with me. my mom was with me all day today, brought me lunch and yummy treats and made the time fly by.
if the entourage wasn't enough, my phone rang endlessly off the hook with people calling to check in, offering to help, or just leave me a nice voicemail to brighten my day: thanks barbara, dad, sheryl, van, uncle jim, beth, angela, karen, grandmother, granddaddy & george. tiffany & steven brought over goodies and kimmy brought dinner and did all my laundry for me. (it is surprising hard to fold clothes when one hand isn't working!)
i am truly blessed to have so very many people who care about me. i don't know what i did to deserve them all.
also the nurses and staff at shepherd are so incredible to me. they take such good care of me and even find ways to add fun into an otherwise dreadful experience. on wednesday, they appointed me "princess caroline" for the day and gave me a tiara to wear. i was the only patient lucky enough to be in the infusion room every single day, so it earned me that royal title!
i am relieved this week is over. i am trying to remain hopeful for the week(s) to come. i just wanna get back to school, get back to some sense of normalcy, even if my body is feeling quite far from normal. i missed the majority of my classes this week. all my professors were 100% understanding but i hate missing so much school. not only for fear of getting behind, but because school has become another happy place. when i am on campus, evwn with greg, i am just another normal student trying to get an education. i love being there. it fills my soul with joy. and i need as much joy as i can get right now!
keep your fingers crossed, say a prayer, do a dance, say a chant...whatever you think might help this medicine to work and finally end this relapse-from-hell. october is one of my favorite months and i would prefer to enjoy it relapse-free and feeling better.
XOXO
Monday, September 21, 2009
Greg
I have a new man in my life.
It is likely that in the coming days (weeks? months???) if you spend any time with me, you will meet this new person. We are quickly becoming inseparable.
His name is Greg and he is in this picture: http://i.ehow.com/images/GlobalPhoto/Articles/5057171/209482-main_Full.jpg
No, it's not Omar Epps, or Dr. Chase, or even Robert Sean Leonard. And sadly, it's not Dr. House either. See that awesome cane with FLAMES on it? That's Greg. I have named him Greg because 1) I name pretty much all inanimate objects; and 2) because Dr. House's first name is Greg.
So Friday was a big day in Greg's life. He made his debut at Oglethorpe University. I had no idea what would happen, what people would do or say. Would they stare? Would they look away too quickly? Would they notice or not notice? Would I have to answer a bunch of questions and tell person after person, "I have MS." It's also a pride issue. I am former dancer that used to have a gorgeous triple pirouette and, at present, I require the use of a cane to walk to my classes without falling directly on my face. Not knowing what to expect from my fellow students and professors just adds to the potential humiliation. But here are the day's highlights:
8:45 a.m.: Arrive at school, park car. Greg and I walk slowly and carefully to the building. I realize that between holding my bag, my cup of tea and Greg holding me, I am left with no free hands to open the door. A young man comes up and opens the door for me. As he follows me up the stairs he says, "Nice cane. I like the flames." Score one for Greg.
8:50 a.m.: Arrive in my French 201 classroom. My French professor has recently been informed by me, via email, that I have MS and am currently fighting the Relapse From Hell. (And I will preface this by saying that this professor and I get along really well AND we are both extremely sarcastic!) As I enter the classroom, he sees me and starts nodding his head in approval and says, "Whassup, Cripple!" Now, I hope no one finds this too offensive, but the "cripple" found it utterly hysterical...then again both our senses of humor are a bit twisted. He, too, comments on my cane and says it is "bad-ass." Score two for Greg.
9:55 a.m.: Two more young male students pass me in the hall and say, "Nice cane. Like Dr. House," and "Sweet cane." A student who was in a class with me last semester sees me and runs over to see if I am "okay." I have to tell her I have MS, that it isn't playing nice and that if I have to use a cane that it "had better be a badass one." She responds, "Caroline, you're so awesome." Score three, four and five for Greg.
10:50 a.m.: Drive to building for next class, get the good handicap parking spot. I get close to the classroom door. A group of students is somewhat near my classroom. One of the students notices me, he stops his conversation, and without saying anything to me, politely walks over and opens my classroom door for me (I realize there is a chance he thought I was a teacher....a disabled teacher at that, and so opened he door for me out of fear/respect!); however, perhaps he just realized it would be a nice thing to do. Six points for Greg!
While all these little things might not seem like much, for a woman who prides herself on being independent and never imagined herself needing help walking at age 30, these small gestures meant the world to me. Every compliment made me feel safe and accepted when I needed it most. It was a day filled with extreme physical and emotional pain, not to mention feeling defeated and insecure and all these people at OU (most of them strangers!) made me feel that I wasn't a freak or disabled or defeated, but that I was just a girl with a kickass-looking cane.
PS - Starting an IVIG infusion today in hopes that it might get this horrible relapse under control. Will be hooked up to tubes 4 hours a day for 5 days - aren't you jealous? Haha. Cross your fingers that this works...because if it doesn't, I am going to have to start investing in more canes. And let's face it, they are really a kind of accessory, and you know I can't have canes that don't go with all my outfits!!
XOXO
It is likely that in the coming days (weeks? months???) if you spend any time with me, you will meet this new person. We are quickly becoming inseparable.
His name is Greg and he is in this picture: http://i.ehow.com/images/GlobalPhoto/Articles/5057171/209482-main_Full.jpg
No, it's not Omar Epps, or Dr. Chase, or even Robert Sean Leonard. And sadly, it's not Dr. House either. See that awesome cane with FLAMES on it? That's Greg. I have named him Greg because 1) I name pretty much all inanimate objects; and 2) because Dr. House's first name is Greg.
So Friday was a big day in Greg's life. He made his debut at Oglethorpe University. I had no idea what would happen, what people would do or say. Would they stare? Would they look away too quickly? Would they notice or not notice? Would I have to answer a bunch of questions and tell person after person, "I have MS." It's also a pride issue. I am former dancer that used to have a gorgeous triple pirouette and, at present, I require the use of a cane to walk to my classes without falling directly on my face. Not knowing what to expect from my fellow students and professors just adds to the potential humiliation. But here are the day's highlights:
8:45 a.m.: Arrive at school, park car. Greg and I walk slowly and carefully to the building. I realize that between holding my bag, my cup of tea and Greg holding me, I am left with no free hands to open the door. A young man comes up and opens the door for me. As he follows me up the stairs he says, "Nice cane. I like the flames." Score one for Greg.
8:50 a.m.: Arrive in my French 201 classroom. My French professor has recently been informed by me, via email, that I have MS and am currently fighting the Relapse From Hell. (And I will preface this by saying that this professor and I get along really well AND we are both extremely sarcastic!) As I enter the classroom, he sees me and starts nodding his head in approval and says, "Whassup, Cripple!" Now, I hope no one finds this too offensive, but the "cripple" found it utterly hysterical...then again both our senses of humor are a bit twisted. He, too, comments on my cane and says it is "bad-ass." Score two for Greg.
9:55 a.m.: Two more young male students pass me in the hall and say, "Nice cane. Like Dr. House," and "Sweet cane." A student who was in a class with me last semester sees me and runs over to see if I am "okay." I have to tell her I have MS, that it isn't playing nice and that if I have to use a cane that it "had better be a badass one." She responds, "Caroline, you're so awesome." Score three, four and five for Greg.
10:50 a.m.: Drive to building for next class, get the good handicap parking spot. I get close to the classroom door. A group of students is somewhat near my classroom. One of the students notices me, he stops his conversation, and without saying anything to me, politely walks over and opens my classroom door for me (I realize there is a chance he thought I was a teacher....a disabled teacher at that, and so opened he door for me out of fear/respect!); however, perhaps he just realized it would be a nice thing to do. Six points for Greg!
While all these little things might not seem like much, for a woman who prides herself on being independent and never imagined herself needing help walking at age 30, these small gestures meant the world to me. Every compliment made me feel safe and accepted when I needed it most. It was a day filled with extreme physical and emotional pain, not to mention feeling defeated and insecure and all these people at OU (most of them strangers!) made me feel that I wasn't a freak or disabled or defeated, but that I was just a girl with a kickass-looking cane.
PS - Starting an IVIG infusion today in hopes that it might get this horrible relapse under control. Will be hooked up to tubes 4 hours a day for 5 days - aren't you jealous? Haha. Cross your fingers that this works...because if it doesn't, I am going to have to start investing in more canes. And let's face it, they are really a kind of accessory, and you know I can't have canes that don't go with all my outfits!!
XOXO
Sunday, August 23, 2009
Whatever gets you through the day
It is not an unusual occurrence for people to ask me, "How are you feeling?" Sometimes this is merely formality, much like, "Hey, how are you?"
But people also ask because they love and care about me and are truly interested in how I am feeling that particular day. I often find myself responding with, "Hanging in there," or something with at least a slightly positive note to it.
I do this for two reasons: A) Hearing someone you love tell you that they are actually feeling quite horrible, physically and/or emotionally...well it really feels crappy to hear that, especially when that person has a chronic disease and feels crappy...well, a lot of the time. This actually ties in with B) I hate disappointing the people I love, even in the slightest bit, by acknowledging that I am not feeling well and that these various diseases are, at present, kicking my...well, you know.
And while I have no doubts that there are a great many people out there that care for me, the reality is also that people have their own crappy stuff to deal with. Life is full of horrible, messy, painful things and at any given moment people are surrounded by their own demons and their own trials to overcome.
With some diseases you hear people say, "I'm going to beat this thing!" or "I will get through this." I desperately want to be able to say, "I am going to beat this thing." I want to be strong. I want to be a fighter. But how do you "beat" something that is incurable and progressive (and that is not exactly responding as we had hoped to the treatments that we keep throwing at it)?? It is one of the frustrating things about chronic diseases. They are a marathon...a never-ending marathon with lots of really steep hills and no finish line.
Many days I feel as if I am just treading water. I try to keep my head up to avoid another relapse...and yet they still manage to find me. I swim as hard as I can to keep my corneas from drying out and inevitably end up with painful inflammation every 4-5 weeks. I balance the various physical pains alongside my sanity and I fight to hang onto hope while battling the MS-depression-demons that are often chemically altering my brain. I find myself grasping onto anything I can if I think it might help me float awhile longer.
Today I baked.
I baked cranberry scones. I baked peanut butter shortbread cookies. Then I put a pork chop with yummy sauce in the crockpot for dinner. Then I cooked some chicken so that I can chop it up and eat it in salads this week when I am too busy with schoolwork to come up with anything for lunch. If you know me (and if you are reading this, you most likely do), you know I do not consider myself a cook of any merit. I am no Martha Stewart. My friends Alice and Steve sent me an apron that has a big treble clef (a symbol used in music) and says "Treble in the kitchen." I love the musical reference, but I also love the fact that it is true! I am trouble in the kitchen! And yet today I was Martha Stewart and Paula Deen and Julia Child. I put on my "treble" apron and mixed dough and kneaded it with my hands and rolled it out and cut it into adorable shapes. And standing there with my apron on, my hands immersed in dough...well, it just felt good. It felt like playing with play-doh, getting my hands all messy, focusing on nothing except the wonderful feel of cookie dough.
Sure, I have a list of things I need to be doing, that I should be doing. But sometimes you gotta tell the list to take a rest and spend some time doing exactly what you want to do and nothing more. Maybe you need to drink tea and read a few chapters of a novel. Maybe what you need is to be a couch potato and catch up on all the things on your TiVo. Perhaps you need to hire a sitter for the kids and take yourself to see a movie. Maybe what you really need is to get out some coloring books and some crayons and spend the afternoon letting your inner child play (right, Jan?). Or maybe you need to bake lots of fattening, carb-filled goodness.
Sometimes you just gotta listen to your heart and ask it, "What would make you feel better? What do you really need today?" And then you ignore your brain telling you to do the laundry or finish that project at work or a million other things it is yelling at you to do.
In times of rough seas when your arms are tired of keeping you afloat...during those times, my motto is: Whatever gets you through the day.
XOXO
But people also ask because they love and care about me and are truly interested in how I am feeling that particular day. I often find myself responding with, "Hanging in there," or something with at least a slightly positive note to it.
I do this for two reasons: A) Hearing someone you love tell you that they are actually feeling quite horrible, physically and/or emotionally...well it really feels crappy to hear that, especially when that person has a chronic disease and feels crappy...well, a lot of the time. This actually ties in with B) I hate disappointing the people I love, even in the slightest bit, by acknowledging that I am not feeling well and that these various diseases are, at present, kicking my...well, you know.
And while I have no doubts that there are a great many people out there that care for me, the reality is also that people have their own crappy stuff to deal with. Life is full of horrible, messy, painful things and at any given moment people are surrounded by their own demons and their own trials to overcome.
With some diseases you hear people say, "I'm going to beat this thing!" or "I will get through this." I desperately want to be able to say, "I am going to beat this thing." I want to be strong. I want to be a fighter. But how do you "beat" something that is incurable and progressive (and that is not exactly responding as we had hoped to the treatments that we keep throwing at it)?? It is one of the frustrating things about chronic diseases. They are a marathon...a never-ending marathon with lots of really steep hills and no finish line.
Many days I feel as if I am just treading water. I try to keep my head up to avoid another relapse...and yet they still manage to find me. I swim as hard as I can to keep my corneas from drying out and inevitably end up with painful inflammation every 4-5 weeks. I balance the various physical pains alongside my sanity and I fight to hang onto hope while battling the MS-depression-demons that are often chemically altering my brain. I find myself grasping onto anything I can if I think it might help me float awhile longer.
Today I baked.
I baked cranberry scones. I baked peanut butter shortbread cookies. Then I put a pork chop with yummy sauce in the crockpot for dinner. Then I cooked some chicken so that I can chop it up and eat it in salads this week when I am too busy with schoolwork to come up with anything for lunch. If you know me (and if you are reading this, you most likely do), you know I do not consider myself a cook of any merit. I am no Martha Stewart. My friends Alice and Steve sent me an apron that has a big treble clef (a symbol used in music) and says "Treble in the kitchen." I love the musical reference, but I also love the fact that it is true! I am trouble in the kitchen! And yet today I was Martha Stewart and Paula Deen and Julia Child. I put on my "treble" apron and mixed dough and kneaded it with my hands and rolled it out and cut it into adorable shapes. And standing there with my apron on, my hands immersed in dough...well, it just felt good. It felt like playing with play-doh, getting my hands all messy, focusing on nothing except the wonderful feel of cookie dough.
Sure, I have a list of things I need to be doing, that I should be doing. But sometimes you gotta tell the list to take a rest and spend some time doing exactly what you want to do and nothing more. Maybe you need to drink tea and read a few chapters of a novel. Maybe what you need is to be a couch potato and catch up on all the things on your TiVo. Perhaps you need to hire a sitter for the kids and take yourself to see a movie. Maybe what you really need is to get out some coloring books and some crayons and spend the afternoon letting your inner child play (right, Jan?). Or maybe you need to bake lots of fattening, carb-filled goodness.
Sometimes you just gotta listen to your heart and ask it, "What would make you feel better? What do you really need today?" And then you ignore your brain telling you to do the laundry or finish that project at work or a million other things it is yelling at you to do.
In times of rough seas when your arms are tired of keeping you afloat...during those times, my motto is: Whatever gets you through the day.
XOXO
Wednesday, August 19, 2009
The 7 Dwarves of Solu-Medrol
Day One on Solu-Medrol.
It is usually on Day Two that I say, to myself or to no one in particular, "No! I cannot take another day. I am skipping Day Three. I don't care!" I don't know, but right about now I am tempted to start yelling No! already and I still have 2 days to go. And then I remember that Days Four, Five, Six and Seven are no walk in the park either, spent still reeling from the steroid effects and then coming off being pumped full of steroids, leaving me with serious weakness, muscle cramping and more.
In its defense, I am partially blaming Solu-Medrol for the craptacular relapse symptoms I am experiencing as well. It has been 10 days and unfortunately they have grown exponentially and while the numbness and such is annoying, it is the nerve pain, arriving like an army to trample all over my body, that has me unable to sleep. Well, that and the heart pounding, elephant-sitting-on-my-chest-feeling and steroid induced restlessness. But I think its mostly the pain right now. Much akin to a blowtorch firing at various body parts for undetermined amounts of time.
So the idea is that the Solu-Medrol will make the Bad Relapse Man go away more quickly and permanently. But while I am still able to make jokes and find the humor in things today...but very soon my body will be inhabited by a series of...well, dwarves.
First the pharmaceutical info:
Oral steroids ake oral corticosteroids (ex:Prednisone or the Medrol Dose Pack) are very powerful anti-inflammatories. What's really cool is unlike certain asthma inhalers, which are steroids that go directly to decrease respiratory inflammation, the oral corticosteroids affect the whole body. They are used in all types of autoimmune and rheumatic diseases, Crohn's disease, they can help treat penumonia and skin diseases as well as some allergic reactions. When you think about it they are pretty incredible drugs. They have a price to pay, including a Very long list of short-term and long-term side effects if used on a frequent basis.
Still, they can treat diseases that nothing else out there can treat, and they can drastically improve quality of life for the patients of such diseases.
I digress from the dwarves...
(To paraphrase one of my favorite authors, Stephen White):
When someone has bad bronchitis or bad allergies or a rash they are often given oral steroids as a method of treatment. Common dosage for these oral drugs ranges from 5mg to 50mg. When an MS patient is being treated for an acute relapse, they are given 1 gram of Solu-Medrol, infused directly into their veins...for 3 days in a row. So grand total: 3 grams. Since I just passed my math class in college, I can tell you that is 20 to 200 times the normal daily amount prescribed. In fact, when I tried the high-dose oral steroids back in Nov, my doc actually had to write out "six hundred milligrams" because too many times a pharmacist has assumed the doctor didn't have his coffee that day and miswrote "600" instead of "60". The point of all this being, even 50mg of steroids makes you irritable and jumpy and nervous. 1000mg into your veins, well, you can use your imagination, because I sincerely hope you never have to experience it firsthand.
This is where the dwarves come into the picture. As all these drugs are being pumped into the MS patient's body, it quickly becomes apparent they he/she has been possessed by all 7 dwarves. Unfortunately, they are not the same 7 dwarves that you might remember from that lovely fairy tale with Snow White. Oh, no. There are some familiar faces such as Grumpy and Dopey. But there is also Angry, Bitchy and Cranky. Sad to say, Happy and Sleepy will make very few and very brief appearances over the 7 days.
If you live with a person undergoing such treatment you quickly learn that in these 7 days the patient will lose most of his/her sense of humor, ability to take anything in stride and everything you do will be wrong, irritating or downright infuriating (Sorry, Chris. You know I really REALLY love you, right??) But it's not the patient's fault! It's those damn dwarves, I tell you!!!
I would sign off saying I am heading to bed, as most normal people would do at such an hour. But I would be lying, knowing that the next few days I will be catching sleep whenever the dwarves and the steroids allow, in snippets here and there. I will make a conscious effort to channel Happy whenever possible. And I will remind myself as often as I can that This Too, Shall Pass. (Thanks always for that one, BBT). And by next week maybe I will feel normal again. Well, not Too normal. I mean, who wants to be "normal", right? ;-)
It is usually on Day Two that I say, to myself or to no one in particular, "No! I cannot take another day. I am skipping Day Three. I don't care!" I don't know, but right about now I am tempted to start yelling No! already and I still have 2 days to go. And then I remember that Days Four, Five, Six and Seven are no walk in the park either, spent still reeling from the steroid effects and then coming off being pumped full of steroids, leaving me with serious weakness, muscle cramping and more.
In its defense, I am partially blaming Solu-Medrol for the craptacular relapse symptoms I am experiencing as well. It has been 10 days and unfortunately they have grown exponentially and while the numbness and such is annoying, it is the nerve pain, arriving like an army to trample all over my body, that has me unable to sleep. Well, that and the heart pounding, elephant-sitting-on-my-chest-feeling and steroid induced restlessness. But I think its mostly the pain right now. Much akin to a blowtorch firing at various body parts for undetermined amounts of time.
So the idea is that the Solu-Medrol will make the Bad Relapse Man go away more quickly and permanently. But while I am still able to make jokes and find the humor in things today...but very soon my body will be inhabited by a series of...well, dwarves.
First the pharmaceutical info:
Oral steroids ake oral corticosteroids (ex:Prednisone or the Medrol Dose Pack) are very powerful anti-inflammatories. What's really cool is unlike certain asthma inhalers, which are steroids that go directly to decrease respiratory inflammation, the oral corticosteroids affect the whole body. They are used in all types of autoimmune and rheumatic diseases, Crohn's disease, they can help treat penumonia and skin diseases as well as some allergic reactions. When you think about it they are pretty incredible drugs. They have a price to pay, including a Very long list of short-term and long-term side effects if used on a frequent basis.
Still, they can treat diseases that nothing else out there can treat, and they can drastically improve quality of life for the patients of such diseases.
I digress from the dwarves...
(To paraphrase one of my favorite authors, Stephen White):
When someone has bad bronchitis or bad allergies or a rash they are often given oral steroids as a method of treatment. Common dosage for these oral drugs ranges from 5mg to 50mg. When an MS patient is being treated for an acute relapse, they are given 1 gram of Solu-Medrol, infused directly into their veins...for 3 days in a row. So grand total: 3 grams. Since I just passed my math class in college, I can tell you that is 20 to 200 times the normal daily amount prescribed. In fact, when I tried the high-dose oral steroids back in Nov, my doc actually had to write out "six hundred milligrams" because too many times a pharmacist has assumed the doctor didn't have his coffee that day and miswrote "600" instead of "60". The point of all this being, even 50mg of steroids makes you irritable and jumpy and nervous. 1000mg into your veins, well, you can use your imagination, because I sincerely hope you never have to experience it firsthand.
This is where the dwarves come into the picture. As all these drugs are being pumped into the MS patient's body, it quickly becomes apparent they he/she has been possessed by all 7 dwarves. Unfortunately, they are not the same 7 dwarves that you might remember from that lovely fairy tale with Snow White. Oh, no. There are some familiar faces such as Grumpy and Dopey. But there is also Angry, Bitchy and Cranky. Sad to say, Happy and Sleepy will make very few and very brief appearances over the 7 days.
If you live with a person undergoing such treatment you quickly learn that in these 7 days the patient will lose most of his/her sense of humor, ability to take anything in stride and everything you do will be wrong, irritating or downright infuriating (Sorry, Chris. You know I really REALLY love you, right??) But it's not the patient's fault! It's those damn dwarves, I tell you!!!
I would sign off saying I am heading to bed, as most normal people would do at such an hour. But I would be lying, knowing that the next few days I will be catching sleep whenever the dwarves and the steroids allow, in snippets here and there. I will make a conscious effort to channel Happy whenever possible. And I will remind myself as often as I can that This Too, Shall Pass. (Thanks always for that one, BBT). And by next week maybe I will feel normal again. Well, not Too normal. I mean, who wants to be "normal", right? ;-)
Monday, August 17, 2009
Rockin for the cure
Thank you to all who were able to attend our event last Saturday and help us raise some $$ for a wonderful nonprofit organization in a tough economy. We had a great turnout and hopefully everyone had a great time. All the band members played and sang like true rock stars, my neurologist made a special guest appearance and my voice held up long enough to sing backup on five or six songs and sing lead on one.
Most importantly, we raised around $4,500. Not bad at all.
My voice is still unreliable. Still scratchy and hoarse, still having problems with volume, but I expected as much. I asked more of it than I should have right now. By the way, my neuro has referred me to the Emory Voice Clinic to be evaluated and start voice therapy with their specialists. Not only are they knowledgeable in all kinds of voice disorders, they also work with singers, which I think will be helpful since singers use their voices in different ways than non-singers. As upsetting as the voice issues are (and they are very upsetting), I have also been visited by two new symptoms that are quite puzzling.
Numbness (the "technical term" is paresthesia) is a very, very common MS symptom. Something like 90% of MSer's experience numbness at some point in their journey. When nerves are damaged, as they are in MS, it can result in numbness in your arms, legs, midsection, face or wherever it wants. And the really puzzling thing is that the numbness can occur in varying degrees. It can just be a decreased sensation where your foot feels funny, and you can't exactly feel the ground. Sort of feels like there are a bunch of pillows attached to your feet. Or numbness can mean total numbness, very similar to how it feels when your arm or leg or foot falls asleep. That numb, tingly, pins-and-needles feeling.
By last Sunday morning, I was numb from my hips all the way down through my toes. By that evening, my entire abdomen and most of my back had joined the party, so I was basically numb from the chest down. In addition, I am experiencing something called Lhermitte's Sign. Something akin to sticking your finger in an electrical outlet, I would imagine. It isn't painful, per se, just extremely uncomfortable when it happens. And it is happening every time I bend my neck forward even the slightest bit.
To say that all this feels bizarre is quite the understatement. I talked to my nurses twice last week and we are "watching-and-waiting" to see if this is a pseudo-exacerbation (i.e. brought on by an infection, stress, fatigue) rather than a true relapse. To be on the safe side, I booked an appointment with the nurse practitioner.
The whole thing terrifies me. I don't know that I can emotionally handle another relapse right now. I really, really need to make it longer than four months without going into Relapse-Land. I am exhausted with the physical and emotional turmoil of being an "unstable" MSer. It is frustrating to feel that you have so little control, except for the option of cutting out all fun activities and avoiding all stress (good or bad) in hopes of staying "stable."
So in theory, I could stop participating in anything that might be stressful to my body, including singing with my band, helping my stepdad/stepsister with their shows, volunteering for and raising $$ for the NMSS, going out to dinner with friends, going to school, doing anything that involves being outside in the summer...the list could go on. Unfortunately, that's just not my style and I have been fighting it tooth and nail for two-plus years. For a former social butterfly whose social/work/volunteer/event calendar was always maxed out, it is devastating to feel I have to say no to so many things I love in order to "maintain" my health. Which is comical, because what is it I am trying to maintain? Maintain this instability? Regardless of what I do/don't do I seem to be facing relapses every three to four months.
If I hadn't sung a few songs with my band on Saturday, would I be able to feel my body right now? Or would it have happened anyway? I am sorry if I sound angry, but it's mostly because I AM angry! I just had a clean MRI. Shouldn't that buy me at least six months of no relapses and no crazy things like my entire body going numb?? I am really trying not to let it all get me down, but it's difficult sometimes. Like many things in life, there is no black and white with MS. It's a lot of gray and you just gotta make the best decisions you can and hope for the best.
To look on the bright side:
1) I can't feel my injection needles pierce my skin right now, which is very nice.
2) The anti-acid reflux diet has gotten me down to the same size I was my senior year in high school. So even though I hate this stupid GERD diet, it got me back into my skinny jeans...and then back out of my skinny jeans because they got too big.
3) Hmm. I don't have a 3 yet. I will keep working on one...
Until I can get more info, I am trying to lay low, gearing up for classes to start back on the 24th. I am trying to avoid the heat and I am being super careful when I walk because you never realize how much you rely on feeling the ground until you can't feel it at all.
And since I can't feel much of anything below my chest, several times a day I have to look down to make sure I am actually wearing pants. I mean, I haven't yet forgotten to put on pants, but when you can't actually feel the pants on your body, it's always best to double-check these things. :-) C'mon. That was funny, right?
Even on really bad days, ya gotta still find the humor in things, ya know?
PS- As this article went to print, the common relapse-partner-in-crime Nerve Pain has arrived on the scene and the author has just returned from her appt at Shepherd where all parties have agreed that 3 days of IV Solu-Medrol would be the wisest choice at this time. Infusion should begin in the next 2 days, followed by 3 days of sleeplessness, irritability and serious carb craving. This will then be followed by 3-4 days of weakness, more irritability, continued carb cravings and a small pity party. Happy thoughts, smiles, sympathy and carb-related foods are all welcome at any time. :-)
XOXO
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