It is about 6 weeks into Copaxone, my new Wonder Drug, designed to slow the progression of MS, minimize relapses and new lesions forming. I suppose only time will tell if it is doing its job. I go back for an MRI in July and I can only hope that between now and then I remain relapse-free and that my brain and spine remain lesion-free!
It is so funny to me how differently each drug can affect you. With Betaseron I got horrible injection site reactions, ran fevers, felt like I had the flu, was achy, got chills, sometimes nausea. But the symptom most warned about with that drug is depression. Apparently with interferon injections you can get Really depressed Really fast and most doctors recommend at least a low-dose anti-depressant preventatively so you never reach that icky low drug-induced depression.
Copaxone is advertised as causing no flu-like symptoms and being less likely to cause depression in patients. Though people warned me the injection site reactions could be far worse (especially since it is every day, and not every other day) So leave it to me to have the opposite reaction that is "normal" or "usual".
What is it Luisa from "The Fantasticks" says...."Please, God, please. Don't let me be normal!"
The first few weeks on the drug the fatigue was awful. I would wake up, my mind was awake, but my body wouldn't do anything I told it do! Wearing a fur coat in a swimming pool filled with molasses kind of fatigue. While that has gotten much better, I have had more headaches over the past 6 weeks than I have had in the past 6 years. The injection sites are getting better as I get the hang of how and where this drug likes to be injected. Annoyingly, every injection burns like a bee sting for about 15-20 minutes. Ice packs seem to help ease the sting a bit, as does distracting myself by talking to a friend for those 20 minutes (thanks, Kimmy!)
But the thing that has bothered me most, that I have found most disconcerting is the appearance of a new unwelcomed persona: Copaxone Caroline. I never know when she will show up and take over my body/mind/soul. She appears for mere minutes, or sometimes stays a few hours. But then she always departs, leaving no trace of her visit behind. One minute, I am watching a fun show on tivo, folding laundry, humming a tune, looking forward to dinner with a friend, then...
BAM! Copaxone Caroline shows up: This tv show is horrible (why do I even watch this show?), the laundry looks awful (I will need to refold everything so it looks better), I hate singing, I hate all music, in fact and there is no way I am up for having dinner with anyone. I don't even want to get dressed. Ever. Again. I will live in pajamas from now on. And not answer my phone, or the door. Why am I even going to college? I am almost 30 years old! That is too old for college...I will never finish. I should quit. I made lunch but now have no appetite to eat anything. Wait. Why am I crying??!?? Nothing happened to make me cry!! This is insane. I give up. It is all just too much. I am running away...to somewhere. I don't know where. But far away.
Then, BAM!
Huh. That was really weird and awful. The laundry is fine, this tv show is funny, I can't wait to see my friend tonight, I am looking forward to class tomorrow, and what was that great song I was humming?
If it sounds like some sort of split personality disorder, well...trust me. It feels like it, too!
At first I thought I was really becoming depressed, maybe my body was trying to tell me to deal with some subconcsious issues I had been supporessing. But try as I might, I couldn't figure out anything and these moments kept cropping up. Not every day, but certainly a few times a week. Very scary. Very disconcerting.
In the end (and with the wise opinions of my medical care team) I realized these moments of despair are totally drug-induced. My body is reacting to the massive amounts of medicine I keep injecting into it every day and right now, it isn't too happy about the whole ordeal. With each visit from Copaxone Caroline I just have to say to myself,
"Just ride it out. You are ok. You are fine. This will pass shortly and you will feel normal again"
Or as normal as I ever feel! :-)
Montel Williams was on Oprah recently talking about his MS (thanks Jennifer for the heads up!) He talked a lot about the depression caused by these medications and also the depressiong that the disease itself can cause. He, too, experiences moments of sheer despair, crying out of nowhere and other bizarre emotional responses. And he was able to find the humor in it, as so many of the MS community does every single day.
So, a warning to my loved ones out there: I sincerely hope you do not receive a visit from Copaxone Caroline, but should she appear, bawling for no reason, seeming apathetic or irritable, just know that her visits never last long (thank God!) and when I return to take my rightful place in this body, I will then spend the next 10 minutes making jokes at my expense and poking fun at how ridiculolus Copaxone Caroline is. And my dear friends who know me best, will laugh right along with me, perhaps poking fun at her as well. Because they will know, as I now fully appreciate, that I am NOT nor never will be someone who gives up. I am more of a fight-to-the-death kinda girl. Kicking butt, taking names, and laughing alot along the way.
Wednesday, April 1, 2009
Tuesday, March 31, 2009
But your labs look great!
A very quick update from the world of Caroline's bloodwork:
I had my appt with the rheumatologist to get the results of the 8 vials I recently gave them and according to my doctor, my "labs look great".
In doctor-speak, this means "Obviously there is something wrong with you because your eyes stopped producing tears, but your labwork says you are 100% fine, so we don't know why your eyes just gave up".
So while I currently cannot be given a clinical diagnosis of Sjogren's Syndrome or some other autoimmune disease, according to my doctor it is a watch-and-wait thing now. She says there is a distinct possibility that it will turn out I do have Sjogren's or even Lupus, but as of today neither can be confirmed. Follow up labs in 6 months.
In the meantime I am trying these new things called Lacriserts which look like little grains of rice, that you insert carefully below each eyeball and then they release gel-like substance up onto your eyeball throughout the day. It sure beats having to put eyedrops in every 20 minutes, but they are not easy to put in (they are TINY and if you drop them on the floor you can forget finding them again, plus they are no longer sterile! and the double vision makes putting mascara on hard enough, much less putting tiny rice things into my eyes!!) and they only last 6-8 hours so I usually need 2 sets.
I am trying to be patient but some days I just want to rip my eyes out of my head they hurt so badly from the dryness. Usually I reach the point at night where it hurts too much to keep them open and Chris and I "watch" TV together and he tells me the funny visual things I am missing while I listen.
The good news is that it is the end of March...and my last MS relapse was in mid-late November, which means I have gone 4 months without a relapse! Which after 2008 is a new record! haha
I just know the Copaxone is going to be the right choice for me. Feeling hopeful that it is working makes having to do injections every day a little easier :-) Though I did tell my doctor I was giving myself my birthday off from injections: my present to myself! Everyone needs at least one "mental health" day a year.
This saturday was our second annual Shoe Spraying Party for Team Wearing Red Shoes. I am so excited. We have a really big team this year and I know it is going to be a great walk with so many of my favorite people there and wearing their red shoes! It is not too late to join us:
http://main.nationalmssociety.org/goto/carolinekulinski
Cmon, you know you wanna put on those red shoes ;-)
I had my appt with the rheumatologist to get the results of the 8 vials I recently gave them and according to my doctor, my "labs look great".
In doctor-speak, this means "Obviously there is something wrong with you because your eyes stopped producing tears, but your labwork says you are 100% fine, so we don't know why your eyes just gave up".
So while I currently cannot be given a clinical diagnosis of Sjogren's Syndrome or some other autoimmune disease, according to my doctor it is a watch-and-wait thing now. She says there is a distinct possibility that it will turn out I do have Sjogren's or even Lupus, but as of today neither can be confirmed. Follow up labs in 6 months.
In the meantime I am trying these new things called Lacriserts which look like little grains of rice, that you insert carefully below each eyeball and then they release gel-like substance up onto your eyeball throughout the day. It sure beats having to put eyedrops in every 20 minutes, but they are not easy to put in (they are TINY and if you drop them on the floor you can forget finding them again, plus they are no longer sterile! and the double vision makes putting mascara on hard enough, much less putting tiny rice things into my eyes!!) and they only last 6-8 hours so I usually need 2 sets.
I am trying to be patient but some days I just want to rip my eyes out of my head they hurt so badly from the dryness. Usually I reach the point at night where it hurts too much to keep them open and Chris and I "watch" TV together and he tells me the funny visual things I am missing while I listen.
The good news is that it is the end of March...and my last MS relapse was in mid-late November, which means I have gone 4 months without a relapse! Which after 2008 is a new record! haha
I just know the Copaxone is going to be the right choice for me. Feeling hopeful that it is working makes having to do injections every day a little easier :-) Though I did tell my doctor I was giving myself my birthday off from injections: my present to myself! Everyone needs at least one "mental health" day a year.
This saturday was our second annual Shoe Spraying Party for Team Wearing Red Shoes. I am so excited. We have a really big team this year and I know it is going to be a great walk with so many of my favorite people there and wearing their red shoes! It is not too late to join us:
http://main.nationalmssociety.org/goto/carolinekulinski
Cmon, you know you wanna put on those red shoes ;-)
Saturday, March 7, 2009
Awareness Fact #7
On this final day of MS Awareness Week I leave with you this...
There are currently several FDA approved treatments for slowing the progression of MS and the National MS Society recommends treatment with one of these disease modifying drugs as soon as possible after being diagnosed in order to help maintain a FABulous quality of life for as long as possible!
I am so blessed to have a wonderful team of doctors and nurses that help me navigate my treatment options in order to manage my MS and help me to do the things I want to do.
Though there is no cure...yet...I have hope that one day we will know a world free of MS. And on that day I will invite you all to a Wearing Red Shoes Dance of Joy event, in which we will...well, wear our red shoes, and dance for joy that the MonSter has been eliminated forever!!!
There are currently several FDA approved treatments for slowing the progression of MS and the National MS Society recommends treatment with one of these disease modifying drugs as soon as possible after being diagnosed in order to help maintain a FABulous quality of life for as long as possible!
I am so blessed to have a wonderful team of doctors and nurses that help me navigate my treatment options in order to manage my MS and help me to do the things I want to do.
Though there is no cure...yet...I have hope that one day we will know a world free of MS. And on that day I will invite you all to a Wearing Red Shoes Dance of Joy event, in which we will...well, wear our red shoes, and dance for joy that the MonSter has been eliminated forever!!!
Friday, March 6, 2009
Awareness Fact #6
Multiple sclerosis causes a wide range of symptoms. That being said, some of the more common ones are extreme/abnormal fatigue, numbness/tingling, balance/coordination problems, muscle weakness, nerve pain, spasticity, tremors, blurred/double vision and vertigo.
Heat, infection and stress can worsen symptoms and/or trigger relapses.
So I try and stay cool and avoid illness as much as anyone can...still working on that last one. If anyone out there has a cure for stress, I am all ears!!! :-)
Heat, infection and stress can worsen symptoms and/or trigger relapses.
So I try and stay cool and avoid illness as much as anyone can...still working on that last one. If anyone out there has a cure for stress, I am all ears!!! :-)
Thursday, March 5, 2009
Awareness Fact #5
The way MS does its damge is by attacking myelin.
Myelin is the insulation that surrounds nerve fibers in the brain and spinal cord.
Think of myelin like the insulation around an electrical wire...and MS just bites into it at various places, causing the electrical/nerve signals to get all messed up.
This is also why people with MS are so sensitive to heat. If the body's electrical system gets too hot, it short circuits causing wacky things to happen! Luckily, once the core body temperature returns to normal, usually the system "reboots" and you are back to normal. :-)
Myelin is the insulation that surrounds nerve fibers in the brain and spinal cord.
Think of myelin like the insulation around an electrical wire...and MS just bites into it at various places, causing the electrical/nerve signals to get all messed up.
This is also why people with MS are so sensitive to heat. If the body's electrical system gets too hot, it short circuits causing wacky things to happen! Luckily, once the core body temperature returns to normal, usually the system "reboots" and you are back to normal. :-)
Wednesday, March 4, 2009
Awareness Fact #4
Important numbers:
Over 400,000 American have MS.
Over 2.5 million people worldwide have MS.
The majority of people are diagnosed between ages 20-50, though the diagnosis age range is actually 2-75!
Over 400,000 American have MS.
Over 2.5 million people worldwide have MS.
The majority of people are diagnosed between ages 20-50, though the diagnosis age range is actually 2-75!
Tuesday, March 3, 2009
More events to come!
Just a quick reminder
Tomorrow night, 6-9pm
"Shop for the Cure"
at Cherry Pie: www.cherrypieatl.com
Also, I just got word of a wonderful event being hosted by my new friends Zach & Melissa Polun at the Sweetwater Brewing Company
Saturday, March 28th, 1-4pm.
For details: http://mssocietysweetwater.blogspot.com/
What creative fundraising ideas people come up with!
Beer tasting for MS? Sounds good to me!
Tomorrow night, 6-9pm
"Shop for the Cure"
at Cherry Pie: www.cherrypieatl.com
Also, I just got word of a wonderful event being hosted by my new friends Zach & Melissa Polun at the Sweetwater Brewing Company
Saturday, March 28th, 1-4pm.
For details: http://mssocietysweetwater.blogspot.com/
What creative fundraising ideas people come up with!
Beer tasting for MS? Sounds good to me!
Awareness Fact #3
The progression, severity and symptoms of multiple sclerosis are unpredictable and vary from person to person. Sometimes symptoms will appear, then disappear completely. Other times they come and go more regularly. Chris and I have learned an important lesson from this: Always get travel insurance when planning fabulous vacations!! :-)
Monday, March 2, 2009
Awareness Fact #2
Multiple sclerosis is not contagious and it is not fatal.
(This means you can hug and kiss on me as often as you like!)
(This means you can hug and kiss on me as often as you like!)
Sunday, March 1, 2009
MS Awareness Week!
Today marks the beginning of MS Awareness Week.
I am fighting a nasty cold but nevertheless will try my best to post wacky facts about MS every day this week.
Other exciting events happening this week:
"Shop for the Cure"
Wednesday, March 4th
6:00-9:00pm
Cherry Pie Boutique
Come shop with us at my favorite store in Vinings and 20% of the evenings proceeds will go to the NMSS in honor of MS Awareness Week!
Yoga in the Park
Saturday, March 7th
11:00am
Piedmont Park
Yoga for all levels in beautiful Piedmont Park (hopefully with less snow by then!)
http://www.nationalmssociety.org/chapters/GAA/index.aspx
If you have an orange MS bracelet, wear it all week long, so if people ask what it's for you can tell them about MS, about your fabulous friend Caroline and invite them join/donate to WalkMS 2009! If you don't have one, let me know and I will make sure you get one!
Fact #1: Multiple sclerosis is believed to be an autoimmune diease, though this has yet to be 100% proven by science. Like most autoimmune diseases, MS affects twice as many women as it does men! We women get all the fun... :-)
I am fighting a nasty cold but nevertheless will try my best to post wacky facts about MS every day this week.
Other exciting events happening this week:
"Shop for the Cure"
Wednesday, March 4th
6:00-9:00pm
Cherry Pie Boutique
Come shop with us at my favorite store in Vinings and 20% of the evenings proceeds will go to the NMSS in honor of MS Awareness Week!
Yoga in the Park
Saturday, March 7th
11:00am
Piedmont Park
Yoga for all levels in beautiful Piedmont Park (hopefully with less snow by then!)
http://www.nationalmssociety.org/chapters/GAA/index.aspx
If you have an orange MS bracelet, wear it all week long, so if people ask what it's for you can tell them about MS, about your fabulous friend Caroline and invite them join/donate to WalkMS 2009! If you don't have one, let me know and I will make sure you get one!
Fact #1: Multiple sclerosis is believed to be an autoimmune diease, though this has yet to be 100% proven by science. Like most autoimmune diseases, MS affects twice as many women as it does men! We women get all the fun... :-)
Thursday, February 26, 2009
Play
This past Sunday was "Oscar Night". If you missed it, it was actually a pretty good show this year. Hugh Jackman was an incredible host - he is a true triple threat and was singing and dancing and making jokes. Plus he is just darn cute. But I digress...
Every year when the Oscar's come on I get a little nostalgic. When I was growing up my Mom and Dad would host an Oscar Night party every year. While the "grown-ups" ate dinner and watched the show in the den, my brother Van and I would watch from up in the playroom. There was always a ton of yummy food, people cheering and booing over who won and who lost, and Van and I were allowed to stay up way past our bedtime!
As you can probably guess, movies were a big part of my life growing up. We loved watching movies, in the theaters, at home. I can remember seeing the first Batman movie (circa 1989) with Mom, Dad & Van on the weekend that it opened, while we were down at the beach. My Dad often took me on "Daddy-Daughter Dates" and we would have lunch and see a movie together. A couple of weeks ago we even had a mini-date of Chick-fil-a and "Journey to the Center of the Earth" on his new blu-ray player and in 3D! (Btw, if you have double vision, you must place 3D glasses over your prism glasses in order for 3D to work properly! haha)
Okay, Caroline. I get it. You like movies.
But that's not the real point here. Keep reading...
It's about escapism. Getting away from it all.
Turning your mind off for a little while.
Maybe your thing isn't movies. Maybe it's Rock Band or the Wii, or tennis or golf. Maybe it's scrapbooking or chasing your kids around in the yard.
It's about playing.
The National MS Society puts out a wonderful magazine called "Momentum". The latest issue just arrived last week and this excerpt caught my eye:
"We defined play as something that could make us feel happy, joyful or cheerful. Some members said that play made them feel more alive; others said it helped them take pleasure in small things. I forget that I have MS when I play." -Nancy Chamberlayne
But this isn't just about MSers! We all need to play more. Because Nancy is right- playing makes you forget about the things that are stressing you out the most. It gives you a mental health break, gives your mind a mini-vacation from all those things that keep you up at night.
In the recent past I have found myself using a phrase that came out of nowhere. I think it originally started with babies: Being able to give Paul & Karen's new baby Courtney her bath "filled my soul with joy". Going to visit Jennifer, Vince, Lola & Lucy "fills my soul with joy". I love playing with babies. I also really enjoy sitting in my office (aka Craft Room) and making homemade cards for people's birthdays. I still love going to the movies. I like to color with crayons. I find baking very relaxing. I love to dance, even though it is harder to do nowadays. I love watching my Pace and HSPS kids perform. I enjoy being a college student again and learning new things. The list goes on...
The older we get the more important it is to make time to play.
I am lucky to have so many things and people that fill my soul with joy and even have the power to make me forget I have MS for a little while. :-)
Every year when the Oscar's come on I get a little nostalgic. When I was growing up my Mom and Dad would host an Oscar Night party every year. While the "grown-ups" ate dinner and watched the show in the den, my brother Van and I would watch from up in the playroom. There was always a ton of yummy food, people cheering and booing over who won and who lost, and Van and I were allowed to stay up way past our bedtime!
As you can probably guess, movies were a big part of my life growing up. We loved watching movies, in the theaters, at home. I can remember seeing the first Batman movie (circa 1989) with Mom, Dad & Van on the weekend that it opened, while we were down at the beach. My Dad often took me on "Daddy-Daughter Dates" and we would have lunch and see a movie together. A couple of weeks ago we even had a mini-date of Chick-fil-a and "Journey to the Center of the Earth" on his new blu-ray player and in 3D! (Btw, if you have double vision, you must place 3D glasses over your prism glasses in order for 3D to work properly! haha)
Okay, Caroline. I get it. You like movies.
But that's not the real point here. Keep reading...
It's about escapism. Getting away from it all.
Turning your mind off for a little while.
Maybe your thing isn't movies. Maybe it's Rock Band or the Wii, or tennis or golf. Maybe it's scrapbooking or chasing your kids around in the yard.
It's about playing.
The National MS Society puts out a wonderful magazine called "Momentum". The latest issue just arrived last week and this excerpt caught my eye:
"We defined play as something that could make us feel happy, joyful or cheerful. Some members said that play made them feel more alive; others said it helped them take pleasure in small things. I forget that I have MS when I play." -Nancy Chamberlayne
But this isn't just about MSers! We all need to play more. Because Nancy is right- playing makes you forget about the things that are stressing you out the most. It gives you a mental health break, gives your mind a mini-vacation from all those things that keep you up at night.
In the recent past I have found myself using a phrase that came out of nowhere. I think it originally started with babies: Being able to give Paul & Karen's new baby Courtney her bath "filled my soul with joy". Going to visit Jennifer, Vince, Lola & Lucy "fills my soul with joy". I love playing with babies. I also really enjoy sitting in my office (aka Craft Room) and making homemade cards for people's birthdays. I still love going to the movies. I like to color with crayons. I find baking very relaxing. I love to dance, even though it is harder to do nowadays. I love watching my Pace and HSPS kids perform. I enjoy being a college student again and learning new things. The list goes on...
The older we get the more important it is to make time to play.
I am lucky to have so many things and people that fill my soul with joy and even have the power to make me forget I have MS for a little while. :-)
Sunday, February 8, 2009
I'm. So. Tired.
Fatigue is one those symptoms that is completely intangible. You can't always recognize it, but MSers always feel it. Of course everyone experiences fatigue. No one is immune to it and as we age we all fatigue more easily (one of the many joys of getting older!)
MS fatigue is hard to explain and like nothing I have ever known. I am slowly starting to learn my own signals and symptoms of it, though I am told that it can differ greatly from MSer to MSer. Have you ever had the nightmare where you are trying to run and simply can't? Or you can run but only in a weird slow motion-molasses type of run? MS fatigue is kinda like that - Dr. Thrower describes it as "trying to walk through a swimming pool while wearing a fur coat"!! ha!
You want to walk at a normal pace, and yet your legs will just not cooperate. You will them to move and its as if the signal just takes longer to get to them and finally they cooperate, but only in Molasses-Mode. Other things stop cooperating too. Your feet don't pick up off the ground as easily (the clinical name is "Foot-Drop"), your hands become weak and you find yourself dropping things more often, even having trouble grasping things like pens and your toothbrush. I always know I am drastically out of "spoons" when can't hold my housekey well enough to maneuver it into the front door lock and it takes me more than 3 tries to get the stupid key in and then turn it! I have learned to laugh at myself when this happens and then I head straight into the house and straight into my pajamas for bed!
MS fatigue doesn't play by the rules. Sometimes a night's sleep returns you back to "normal". Sometimes you wake up after a perfect night's sleep and feel like your body has been pumped full of lead. This morning was one of those mornings. My sweet husband finally convinced me to take some provigil and that seemed to help a little. We think that my body is just adjusting to the new medication and its hard work getting used to it.
Oh! I started Copaxone last Tuesday. I have high hopes that it will work for me, though getting my body used to a new drug is a slow, painful process. Hopefully 7-10 days I will be as good as new. It is still a sub-cutaneous injection (aka little needle) but I have to do it every day. Also its crucial to rotate injection sites and I have to have 7 sites that I use. So I assigned each site a different day of the week: right on Wed, left leg on Mon, etc. I even made up a mini-dance routine so that I would remember which day goes with which body part! hahaha!
Maybe if I get inspired I will put my Copaxone dance on youtube!!
MS fatigue is hard to explain and like nothing I have ever known. I am slowly starting to learn my own signals and symptoms of it, though I am told that it can differ greatly from MSer to MSer. Have you ever had the nightmare where you are trying to run and simply can't? Or you can run but only in a weird slow motion-molasses type of run? MS fatigue is kinda like that - Dr. Thrower describes it as "trying to walk through a swimming pool while wearing a fur coat"!! ha!
You want to walk at a normal pace, and yet your legs will just not cooperate. You will them to move and its as if the signal just takes longer to get to them and finally they cooperate, but only in Molasses-Mode. Other things stop cooperating too. Your feet don't pick up off the ground as easily (the clinical name is "Foot-Drop"), your hands become weak and you find yourself dropping things more often, even having trouble grasping things like pens and your toothbrush. I always know I am drastically out of "spoons" when can't hold my housekey well enough to maneuver it into the front door lock and it takes me more than 3 tries to get the stupid key in and then turn it! I have learned to laugh at myself when this happens and then I head straight into the house and straight into my pajamas for bed!
MS fatigue doesn't play by the rules. Sometimes a night's sleep returns you back to "normal". Sometimes you wake up after a perfect night's sleep and feel like your body has been pumped full of lead. This morning was one of those mornings. My sweet husband finally convinced me to take some provigil and that seemed to help a little. We think that my body is just adjusting to the new medication and its hard work getting used to it.
Oh! I started Copaxone last Tuesday. I have high hopes that it will work for me, though getting my body used to a new drug is a slow, painful process. Hopefully 7-10 days I will be as good as new. It is still a sub-cutaneous injection (aka little needle) but I have to do it every day. Also its crucial to rotate injection sites and I have to have 7 sites that I use. So I assigned each site a different day of the week: right on Wed, left leg on Mon, etc. I even made up a mini-dance routine so that I would remember which day goes with which body part! hahaha!
Maybe if I get inspired I will put my Copaxone dance on youtube!!
Sunday, January 25, 2009
Ramblings
I am always so excited when people comment on my blog, or email me to say they were reading it. It is nice to know that what I write is at least somewhat interesting to others. Many days it is just an outlet for me, a place to put my thoughts and the bazillion emotions churning around. Other days it is a quick way to keep my loved ones informed. I am always amazed when people I have never even met comment on my blog, to offer good wishes and advice. People are so awesome. So it would seem, as indicated by the kind comment on my last blog (and by further internet research) that Sjogren's is still somewhat on the table. I guess a negative blood test is a good sign, but does not necessarily mean I am off the hook. Obviously I will keeping my previously scheduled appt with the rheumatologist!
Also, I went and got another opinion on the bulging disc in my neck and the orthopaedist agreed that it was pretty bad. He could even see that it was herniated on an xray. Yuck! I started physical therapy last week and I am really Really hoping that the disc is pushing on my nerves. (Who ever thought Anyone would hope for such an awful thing?!?!) In my defense, and to let you know that I am NOT a masochist, if the disc is responsible for my arm nerve pain then that means there is actually SOMEthing I can do about it, rather than curse the MonSter for a symptom I can do nothing to cure. My left arm has by far been my worst nerve pain, so what a complete JOY it would be to kick that left arm pain to the curb.
Only time will tell as I diligently try whatever my physical therapist tells me to try and wait patiently to see what happens.
In other news, I am once again duking it out with the insurance company over paying for medication. Dr. Thrower wants to switch me to Copaxone, another injectable drug designed to slow down the MonSter. Good news is that it is said to have less side effects and I won't wake up in the middle of the night with fever and chills as often; Bad news is that it is an injection every day which is a bummer. I try not and be too whiny about it, because one of my favorite uncles has to give himself at least 5 shots every day to manage his own monstrous disease, so when I feel a pity party coming on I remember him and if he can do 5 I can do 1.
Oh and my insurance is Totally going to pay for this drug, they just like to make me jump through hoops of fire while twirling batons and singing the national anthem just to prove I Really want this medicine. So when I have jumped high enough for their liking, they will pony up. :-)
In the meantime, we are gearing up for an exciting year: WalkMS 2009 is officially on the calendar and Team Wearing Red Shoes is up and running! 6 team members and counting...but my goal is to have 30 people on our team this year, so links will be below- sign up!
Also, we have two big weddings this year and lots of wedding-related fun events. Our dear friends Steven & Tiffany are saying their "I Do's" in April, then Chris' brother Matthew is marrying our soon-to-be-sister-in-law Katie in May. I love it when people I love get married.
I am sorry this blog lacked a solid theme. I usually try and be more cohesive in my thoughts and writing, but tonight my brain is just rambling on and now so is my blog. Time to go do PT exercises before bed and enjoy my "nights off" from shots while I still can! :-)
See below for link to my WalkMS page. From there you can join the team and/or donate. We know its a rough year out there, so all we ask is enough to keep the MS research alive and well.
Every little bit counts!
http://main.nationalmssociety.org/goto/carolinekulinski
Also, I went and got another opinion on the bulging disc in my neck and the orthopaedist agreed that it was pretty bad. He could even see that it was herniated on an xray. Yuck! I started physical therapy last week and I am really Really hoping that the disc is pushing on my nerves. (Who ever thought Anyone would hope for such an awful thing?!?!) In my defense, and to let you know that I am NOT a masochist, if the disc is responsible for my arm nerve pain then that means there is actually SOMEthing I can do about it, rather than curse the MonSter for a symptom I can do nothing to cure. My left arm has by far been my worst nerve pain, so what a complete JOY it would be to kick that left arm pain to the curb.
Only time will tell as I diligently try whatever my physical therapist tells me to try and wait patiently to see what happens.
In other news, I am once again duking it out with the insurance company over paying for medication. Dr. Thrower wants to switch me to Copaxone, another injectable drug designed to slow down the MonSter. Good news is that it is said to have less side effects and I won't wake up in the middle of the night with fever and chills as often; Bad news is that it is an injection every day which is a bummer. I try not and be too whiny about it, because one of my favorite uncles has to give himself at least 5 shots every day to manage his own monstrous disease, so when I feel a pity party coming on I remember him and if he can do 5 I can do 1.
Oh and my insurance is Totally going to pay for this drug, they just like to make me jump through hoops of fire while twirling batons and singing the national anthem just to prove I Really want this medicine. So when I have jumped high enough for their liking, they will pony up. :-)
In the meantime, we are gearing up for an exciting year: WalkMS 2009 is officially on the calendar and Team Wearing Red Shoes is up and running! 6 team members and counting...but my goal is to have 30 people on our team this year, so links will be below- sign up!
Also, we have two big weddings this year and lots of wedding-related fun events. Our dear friends Steven & Tiffany are saying their "I Do's" in April, then Chris' brother Matthew is marrying our soon-to-be-sister-in-law Katie in May. I love it when people I love get married.
I am sorry this blog lacked a solid theme. I usually try and be more cohesive in my thoughts and writing, but tonight my brain is just rambling on and now so is my blog. Time to go do PT exercises before bed and enjoy my "nights off" from shots while I still can! :-)
See below for link to my WalkMS page. From there you can join the team and/or donate. We know its a rough year out there, so all we ask is enough to keep the MS research alive and well.
Every little bit counts!
http://main.nationalmssociety.org/goto/carolinekulinski
Saturday, January 17, 2009
Good, Bad, Good, Huh?!?
First of all, people never cease to amaze me.
Here I am going through all this craziness and as I share my thoughts with the world, not only do my family and dear friends cheer me on with emails, phone calls and comments but then perfect strangers also send me their thoughts and well wishes! People are truly amazing.
Chris and I woke up early on Wed morning for MRI Take Two! I woke up at 6am, took my doctor-prescribed Ativan at 7am and by 8am I was telling the technician that I was planning to sing show tunes while I was inside the MRI machine! (The tech informed me it would be better if I did NOT sing show tunes. We finally compromised on me singing them in my head instead of outloud). No, I am not making this up! As I changed into my attractive cotton gown for the machine, Chris apologized to the tech informing him I was "high" on Ativan. The tech just laughed and said I wasn't the first! hehe. Frankly, I could care less if I made a complete fool of myself because I made it through the MRI! Yippee!!!
An hour and a half later (now slightly coming down off the Ativan!) we met with Dr. Thrower for the results of last week's blood work and of the MRI:
The Good: I have no new lesions in my brain! Yippee!!! Clean brain!!!!
The Bad: I do have a new inflamed (aka "active") lesion on my spinal cord. A lot of people don't realize that MS can cause lesions on both the brain and/or the spinal cord. And this week we discovered my first cord lesion. SO annoying and unpredictable this disease. This little bugger is in my neck area and it may or may not be responsible for the nerve pain in my left shoulder/arm that has been visiting ever since the summer. Sooo, that means the medicine I have been on isn't doing what we hoped it would (it is supposed to keep new lesions away, in theory). Sooo, I am in the process of switching from Betaseron to Copaxone. Hopefully by next week Aetna will have approved this new med and I will be on my way to switching over. I am nervous about it and a little scared, but optimistic that it will work better for me and jive with my body chemistry and keep me lesion-free for years to come!
The Good: My blood work came back normal, meaning the Sjogren's antibodies were negative, meaning as far as we can tell I do not have Sjogren's Syndrome. Yay! Still NO idea why my eyes gave up producing tears, but I am hopeful that this is all just a weird reaction to too many steroids and they will come back in time.
The Huh?!?: The MRI also showed that I have a bulging (herniated) disc in my neck between C6 and C7. Wh-what?!?! How random is that? I have NO idea how this happened, as it did not show on my MRI a year ago. Even more interesting is that there is a chance that this disc could be responsible for the nerve pain in my left arm! In the fight of the century, my spine lesion and my herniated disc are dueling it out for the title of "Nerve Pain Causer"! Dr. Thrower has recommended I start PT ASAP to try and get the disc to chill out. Stay tuned to see who wins this duel and claims the title!
Needless to say it has been an exhausting week. I had a good bawling cry Wed night about the whole thing and since then I am coming to terms with all the news and working my way through the 5 million emotions that come with it!
Again, thank you so much for all the love and support. It means so much and on the bad days is what keeps me going. I have hope for the new year. I truly believe 2009 is going to be a good one. I turn 30 this year. I am starting on a new medicine which I just know is going to help and make me feel better and keep the MonSter quiet. The economy is crap, true, but it is often in tough times when people pull together, lean on each other and do amazing things for one another.
Here I am going through all this craziness and as I share my thoughts with the world, not only do my family and dear friends cheer me on with emails, phone calls and comments but then perfect strangers also send me their thoughts and well wishes! People are truly amazing.
Chris and I woke up early on Wed morning for MRI Take Two! I woke up at 6am, took my doctor-prescribed Ativan at 7am and by 8am I was telling the technician that I was planning to sing show tunes while I was inside the MRI machine! (The tech informed me it would be better if I did NOT sing show tunes. We finally compromised on me singing them in my head instead of outloud). No, I am not making this up! As I changed into my attractive cotton gown for the machine, Chris apologized to the tech informing him I was "high" on Ativan. The tech just laughed and said I wasn't the first! hehe. Frankly, I could care less if I made a complete fool of myself because I made it through the MRI! Yippee!!!
An hour and a half later (now slightly coming down off the Ativan!) we met with Dr. Thrower for the results of last week's blood work and of the MRI:
The Good: I have no new lesions in my brain! Yippee!!! Clean brain!!!!
The Bad: I do have a new inflamed (aka "active") lesion on my spinal cord. A lot of people don't realize that MS can cause lesions on both the brain and/or the spinal cord. And this week we discovered my first cord lesion. SO annoying and unpredictable this disease. This little bugger is in my neck area and it may or may not be responsible for the nerve pain in my left shoulder/arm that has been visiting ever since the summer. Sooo, that means the medicine I have been on isn't doing what we hoped it would (it is supposed to keep new lesions away, in theory). Sooo, I am in the process of switching from Betaseron to Copaxone. Hopefully by next week Aetna will have approved this new med and I will be on my way to switching over. I am nervous about it and a little scared, but optimistic that it will work better for me and jive with my body chemistry and keep me lesion-free for years to come!
The Good: My blood work came back normal, meaning the Sjogren's antibodies were negative, meaning as far as we can tell I do not have Sjogren's Syndrome. Yay! Still NO idea why my eyes gave up producing tears, but I am hopeful that this is all just a weird reaction to too many steroids and they will come back in time.
The Huh?!?: The MRI also showed that I have a bulging (herniated) disc in my neck between C6 and C7. Wh-what?!?! How random is that? I have NO idea how this happened, as it did not show on my MRI a year ago. Even more interesting is that there is a chance that this disc could be responsible for the nerve pain in my left arm! In the fight of the century, my spine lesion and my herniated disc are dueling it out for the title of "Nerve Pain Causer"! Dr. Thrower has recommended I start PT ASAP to try and get the disc to chill out. Stay tuned to see who wins this duel and claims the title!
Needless to say it has been an exhausting week. I had a good bawling cry Wed night about the whole thing and since then I am coming to terms with all the news and working my way through the 5 million emotions that come with it!
Again, thank you so much for all the love and support. It means so much and on the bad days is what keeps me going. I have hope for the new year. I truly believe 2009 is going to be a good one. I turn 30 this year. I am starting on a new medicine which I just know is going to help and make me feel better and keep the MonSter quiet. The economy is crap, true, but it is often in tough times when people pull together, lean on each other and do amazing things for one another.
Monday, January 5, 2009
No One is Perfect...Least of all Me
Well I arrived at Shepherd Center at the bright and early hour of 7:15AM. For those that know me, I am NOT a morning person, but I was in a good mood, ready to get the show on the road.
I signed in, joked around with the MRI technician. He found my vein quickly and easily, shot me full of the special gadolinium dye material. He gave me a blanket, secured my head so I wouldn't move during the scan and into the tube I went...
And then I don't know exactly what happened.
I have had my fair share of MRIs. I am good at them. I close my eyes as soon as I lay down so that I don't see the cage over my head or the tiny metal tube I am then shoved into. I keep my eyes closed the whole time, picturing myself laying on a picnic blanket on a lovely autumn afternoon at the Garden Hills duckpond. And then I sing showtunes silently in my head while the machine whirls away around me.
But this morning at 8am the machine started and I felt like I was going to pass out. My body got extremely hot, my eyes were burning (maybe I didn't moisten them enough before I closed them??) I completely panicked. I squeezed the button to let the tech know something was wrong. He came running and pulled me out of the machine. We got to talking trying to figure it out. Did the dye infusion make me feel woozy for a minute? Why did I feel so hot when the machine started, but as soon as I was out felt fine? I mentioned my new eye plugs. The tech asked was there any metal in them? I didn't think so. But of course he insisted we check to be sure. A couple of phone calls later, my eye doctor is certain the plugs are completely plastic, which means I just had an old-fashioned, run-of-the-mill panic attack.
I am so mad and disappointed in myself that I could just scream. I begged the tech for a do-over, but of course now he has to have formal written documentation from my eye doctor stating there is no metal in the plugs. No one wants to get sued, and I can respect that. I thanked the tech for his time and apologized for the 50th time and he smiled and said not to worry and we would reschedule soon. I called my eye doctor back asking them to draw up a document and fax it to Shepherd as soon as posisble. Meanwhile I am simply sick to my stomach over acting like a complete baby and freaking out for no reason whatsoever. I promptly walked outside sat on the nearest bench outside the newly reonvated Shepherd Center and then burst into tears.
But I have learned several important lessons this morning:
1. No one is strong all the time. Everyone is allowed and needs to panic and be scared and then cry over acting like an idiot. If nothing else it is humbling.
2. Having "punctul plugs" put into your eyes does NOT mean you will not be able to cry tears. You can still cry. Lots!
3. Stress comes out in surprising ways. You might think you are handling things perfectly well and NOT scared about possibly having Sjogren's Syndrome and NOT completely frustrated over your eyes hurting all the time on top of not being able to see straight and THEN you panic during a routine MRI and you realize you weren't handling things all that well after all, you were merely suppressing it all.
So you work through the emotions like you went through the boxes of Xmas decorations you pulled from the attic last month, looking at each one and remembering it, laughing, smiling, crying, or whatever else you need to do to process it all. Then you wrap them each back up, gingerly, carefully, put them back into their box, into the attic...and you hope and pray that the ceiling doesn't suddenly decide to cave in and drop the box of emotions right on top of your head!
I still get to see Dr. Thrower or Tracy today. So I will get some nice face time to ask questions, etc. I am grateful for that. And hopefully by this afternoon i will be able to laugh at myself as I tell them I panicked in the MRI for no particular reason. And we will reschedule soon, maybe next week if they have something. And I will try not to be so hard on myself and rather listen to my body, which obviously was trying to tell me something this morning.
Lastly, I hope I have not disappointed all of you whom I love and admire. I know we were looking forward to these results and what they would tell us. I am sorry we will have to wait a bit longer. I have always struggled with the idea of perfection, of things being "perfect" and with wanting to achieve some sort of perfection myself. I was a straight A student most of my life (did I mention I now have a 4.0 at Oglethorpe?) and have always beat myself up when I feel I didn't do as well as I should have at something.
Well I can safely say that today, i got a "C", maybe even a "D" at "Passing the MRI with Flying Colors". In fact, I totally failed!!! I pretty much got an "F". And I am still me and I am okay and I will laugh about it and laugh at myself and in the grand scheme of things it is not a big deal.
I am not perfect.
No one is perfect.
And how boring life would be if we were.
I signed in, joked around with the MRI technician. He found my vein quickly and easily, shot me full of the special gadolinium dye material. He gave me a blanket, secured my head so I wouldn't move during the scan and into the tube I went...
And then I don't know exactly what happened.
I have had my fair share of MRIs. I am good at them. I close my eyes as soon as I lay down so that I don't see the cage over my head or the tiny metal tube I am then shoved into. I keep my eyes closed the whole time, picturing myself laying on a picnic blanket on a lovely autumn afternoon at the Garden Hills duckpond. And then I sing showtunes silently in my head while the machine whirls away around me.
But this morning at 8am the machine started and I felt like I was going to pass out. My body got extremely hot, my eyes were burning (maybe I didn't moisten them enough before I closed them??) I completely panicked. I squeezed the button to let the tech know something was wrong. He came running and pulled me out of the machine. We got to talking trying to figure it out. Did the dye infusion make me feel woozy for a minute? Why did I feel so hot when the machine started, but as soon as I was out felt fine? I mentioned my new eye plugs. The tech asked was there any metal in them? I didn't think so. But of course he insisted we check to be sure. A couple of phone calls later, my eye doctor is certain the plugs are completely plastic, which means I just had an old-fashioned, run-of-the-mill panic attack.
I am so mad and disappointed in myself that I could just scream. I begged the tech for a do-over, but of course now he has to have formal written documentation from my eye doctor stating there is no metal in the plugs. No one wants to get sued, and I can respect that. I thanked the tech for his time and apologized for the 50th time and he smiled and said not to worry and we would reschedule soon. I called my eye doctor back asking them to draw up a document and fax it to Shepherd as soon as posisble. Meanwhile I am simply sick to my stomach over acting like a complete baby and freaking out for no reason whatsoever. I promptly walked outside sat on the nearest bench outside the newly reonvated Shepherd Center and then burst into tears.
But I have learned several important lessons this morning:
1. No one is strong all the time. Everyone is allowed and needs to panic and be scared and then cry over acting like an idiot. If nothing else it is humbling.
2. Having "punctul plugs" put into your eyes does NOT mean you will not be able to cry tears. You can still cry. Lots!
3. Stress comes out in surprising ways. You might think you are handling things perfectly well and NOT scared about possibly having Sjogren's Syndrome and NOT completely frustrated over your eyes hurting all the time on top of not being able to see straight and THEN you panic during a routine MRI and you realize you weren't handling things all that well after all, you were merely suppressing it all.
So you work through the emotions like you went through the boxes of Xmas decorations you pulled from the attic last month, looking at each one and remembering it, laughing, smiling, crying, or whatever else you need to do to process it all. Then you wrap them each back up, gingerly, carefully, put them back into their box, into the attic...and you hope and pray that the ceiling doesn't suddenly decide to cave in and drop the box of emotions right on top of your head!
I still get to see Dr. Thrower or Tracy today. So I will get some nice face time to ask questions, etc. I am grateful for that. And hopefully by this afternoon i will be able to laugh at myself as I tell them I panicked in the MRI for no particular reason. And we will reschedule soon, maybe next week if they have something. And I will try not to be so hard on myself and rather listen to my body, which obviously was trying to tell me something this morning.
Lastly, I hope I have not disappointed all of you whom I love and admire. I know we were looking forward to these results and what they would tell us. I am sorry we will have to wait a bit longer. I have always struggled with the idea of perfection, of things being "perfect" and with wanting to achieve some sort of perfection myself. I was a straight A student most of my life (did I mention I now have a 4.0 at Oglethorpe?) and have always beat myself up when I feel I didn't do as well as I should have at something.
Well I can safely say that today, i got a "C", maybe even a "D" at "Passing the MRI with Flying Colors". In fact, I totally failed!!! I pretty much got an "F". And I am still me and I am okay and I will laugh about it and laugh at myself and in the grand scheme of things it is not a big deal.
I am not perfect.
No one is perfect.
And how boring life would be if we were.
Thursday, January 1, 2009
Happy New Year!
Wishing everyone a new year filled with laughter and love, two of my very favorite things!
I am still struggling with my eyes and they are so dry right now (they are much worse at night sometimes) that I am having a hard time keeping them open very long so this is short! But had to send happy 2009 wishes out into the great beyond. It is also my Christopher's 31st birthday. He is currently playing with his Rock Band drumset and new video game.
Boys are never too old for new toys!
Heading to another eye doctor tomorrow for a second opinion on Sahara Eyes. Thanks for the awesome advice and comments to help me everyone! I am also trying to go see a rheumatologist asap to see if this really is Sjogren's or not. Then Monday I am having my MRI of the old brain to see why it keeps causing relapses all the darn time! Busy busy next few days! Will write more soon to keep the updates coming.
But before I go, I have two bits of info to share:
1. Did you know that the Pope, as in The POPE, wears red shoes!?!?! I just found this out today and am thrilled. He obviously is a supporter of finding the cure!!!
2. I will start the new year with this quote. I LOVE quotes. And it applies no matter what your situation is:
"Be of good cheer. Do not think of today's failure, but of the success that may come tomorrow. You have set yourself a difficult task, but you will succeed if you persevere; and you will find a joy in overcoming obstacles." - Helen Keller
May we all find the joy in overcoming our own obstacles.
Happy New Year.
XOXO
I am still struggling with my eyes and they are so dry right now (they are much worse at night sometimes) that I am having a hard time keeping them open very long so this is short! But had to send happy 2009 wishes out into the great beyond. It is also my Christopher's 31st birthday. He is currently playing with his Rock Band drumset and new video game.
Boys are never too old for new toys!
Heading to another eye doctor tomorrow for a second opinion on Sahara Eyes. Thanks for the awesome advice and comments to help me everyone! I am also trying to go see a rheumatologist asap to see if this really is Sjogren's or not. Then Monday I am having my MRI of the old brain to see why it keeps causing relapses all the darn time! Busy busy next few days! Will write more soon to keep the updates coming.
But before I go, I have two bits of info to share:
1. Did you know that the Pope, as in The POPE, wears red shoes!?!?! I just found this out today and am thrilled. He obviously is a supporter of finding the cure!!!
2. I will start the new year with this quote. I LOVE quotes. And it applies no matter what your situation is:
"Be of good cheer. Do not think of today's failure, but of the success that may come tomorrow. You have set yourself a difficult task, but you will succeed if you persevere; and you will find a joy in overcoming obstacles." - Helen Keller
May we all find the joy in overcoming our own obstacles.
Happy New Year.
XOXO
Monday, December 22, 2008
Old Sahara Eyes
Do you ever feel like you are part of a weird science experiment? I mean, Life does wacky things for sure, but our bodies are unbelievable organisms that are often even wackier.
As if MS isn't weird enough all by itself, I now seem to be experiencing strange, new symptoms courtesy of either my ever-bizarre body or else the lingering side effects of the Massive amounts of steroids I have recently consumed.
So to update I finished my round of Solu-medrol, 3 days worth, and a lot of my symptoms have started to slowly subside. Others are still lingering, but I am hopeful they will move along shortly. However, I seem to have accumulated a few new symptoms, notably my severe Sahara Eyes. I have heard the term "dry eyes" before. I have experienced dry eyes before, usually during allergy season, or perhaps after a night of heavy drinking...I mean, I have Heard that people experience dry eyes after heavy drinking...I wouldn't know personally about such things ;-) Anyway, we are talking Severe dry eyes. I felt as if my eyes suddenly up and decided not to produce tears. At all. Nothing. Nada. No watering when I yawned or even when I held them open to try and force them to water. Dry as, well, the Sahara desert!
This new fun started last Wednesday, so today the Ophthamologist was able to fit me in for an eye exam. Turns out I wasn't crazy. After a really weird test where they put a special piece of paper in your eye for 5 minutes to see how many tears you produce in that amount of time, the verdict: 0 Tears Produced. Seriously?!?! My eyes are actually producing NO water/tears whatsoever?? Yep, you heard right.
Zero Tears.
Oh Good Gracious.
At some point, all you can do is laugh. Or I guess you can cry. In fact, I probably Should cry. It would put some water in my stupid Sahara eyes!!!
This could all just be a side effect of the steroids I have come off of. OR it could be a side effect of any one of the 5 Million medications I am on. OR it could be some disease called Sjogren's Syndrome which is totally random plus I don't have time for any more diseases right now, thanks. So no one is exactly sure why my eyes up and decided to stop producing water, but the fact is I have got to get some moisture back in there. Turns out it can be dangerous to let severely dry eyes go without treatment. You can end up with scarred corneas or infections or some other awfulness. I have been dropping OTC (over the counter) drops in there 3-4 times an hour just to function. Otherwise I can barely keep them open for very long. But dropping eyedrops that often is really Really annoying, plus not really practical. I started a steroid eyedrop (which seems to make no sense if steroids caused this, but apparently I am wrong?). Then my doctor wants me to start using Restasis, a prescription eye drop designed to prompt the eyes to start making tears again. The bad news is that it can take a while to really start working. So in the meantime I am the Eyedropper Queen.
It is so hard to process all this new information and make the best decisions about what to do next. Every doctor has a different opinion and they are just opinions. it is my body and ultimately I have to decide what i want to do and how to deal with its many MANY quirks and shortcomings. I don't yet know if there are any downsides to Restasis, but i know that i don't want to take any more medications than I have to because they ALL come with their own host of side effects. So I rest my eyes alot and keep them closed. I put drops in, or that gel substance that feels like someone rubbed vaseline all over your eyeball. totally gross, but it actually feels pretty nice on a poor zero-tears dry eye. :-)
Oh it's a mess. But what are you gonna do?
As for me I'm gonna put on some red shoes and do my best to enjoy Christmas with my family, Old Sahara Eyes and all. :-)
Monday, December 8, 2008
Uninvited guests
Chris and I went to Shepherd Center on Friday. The ROCK STAR Tracy Walker was able to see me and she was equally unhappy that the oral steroids haven't done diddly-squat. She was also pretty unhappy that this is my third round of steroids this year. Soooo,
Short Term Plan: get a round of IV-steroids going asap. waiting on nurses to schedule me and get on over here and hook me up!
Long Term Plan: go back to Shepherd on Jan. 5th for an MRI to see what the heck is happening in my crazy brain and then reevaluate whether or not to change my maintenance (magical) injectable drugs. Perhaps the one I am one isn't jiving with my body chemistry as well as it should. Luckily there are still 3 more I can try!
The MonSter is just being extremely stubborn this go-round. Apparently it is trying to get invited to Christmas dinner or something but that is NOT going to happen because I am licking this thing before the holidays so I can actually enjoy them! I already spent Thanksgiving weekend balled up on the couch, and I ain't losing another holiday, so I will gladly let nurses stick needles in my veins for another few days if it will make the MonSter pack up its bags and move out!
Don't you just hate uninvited holiday guests??
Oh! and one last favor while I am thinking about it. After Round Two of steroids this week my body is going to be pretty immune-compromised. Not Bubble Girl compromised or anything, but more suppressed than normal. So I ask that you remember me cautiously especially if you have been sick. My body won't be able to fight off much in the way of colds and flu, etc. So no hugs and kisses if you have been coughing and sneezing! We can do air kisses from across the room. And I will try and be extra good about washing my hands and keeping the Purell close by! Thanks and will post again soon...
Thursday, December 4, 2008
Relapse-Land
This Relapse has settled in and gotten far too comfortable, to the point where I seem to be living in some strange twilight-zone-universe...
In this backwards sci-fi dimension nothing is as it seems. A stunning blonde beauty who "looks so good" is actually struggling just to stand in place while her legs wobble on top of numb feet with occasional vertigo to boot. One minute she feels very little pain, feels peaceful; the next minute she is writhing in pain that appeared out of nowhere that then disappears just as suddenly without explanation. In this strange universe, day and night do not exist. Fatigue sets in out of nowhere at lunchtime causing immense drowsiness.
Times, days, all blurred together. Did she eat breakfast? Lunch? She can't remember! The brain fog is unbelievably bad. Like swimming through molasses just to get a thought out and form it into a sentence. Her body's electrical system is on the fritz and constantly short circuiting causing strange muscle spasms, tremors, ringing ears, buzzing legs and other bizarreness. At times it feels like her entire body is shaking. Or maybe she is just really cold.She thinks her dad called. Was that today? Yesterday? Did she remember to call him back?? Damn you brain fog!!
Cabin fever sets in, she is dying to get out, and then she is too weak to walk out to the car. Back to the couch. Is there actually anything left on Tivo? One minute she is starving, the next too queasy to eat and no appetite for anything. And her sassy blonde locks are falling out by the handfuls again, courtesy of the massive amounts of steroids she has just consumed. Perhaps she should buy a wig in every color and wear them to suit her mood. Today sultry brunette! Tomorrow fiesty redhead!
Just spoke with my team at Shepherd Center to get their opinion on why, after all those steroids, I am feeling slightly worse, rather than better. They have advised me to come on in asap to talk it over and possibly send me in the good ole MRI machine. So trying to get an appt either tomorrow or Monday.
Sigh. I keep telling myself that this Twilight Zone I am living in is a temporary state of being and it will end.
I have to be patient and be brave.
And remember to laugh at myself.
And find my Happy Place when it is a really Bad Day.
And let friends and family help me do those things.
This too, shall pass.
XOXO
Monday, December 1, 2008
Help is a 4 letter word!
It seems this "episode" has really knocked me on my...well...you know. I guess trying to go to my classes and trying to help put on a show is more taxing to my body than I was willing to admit and now I am still paying the price for it 2 weeks later. It is so hard to know what the limits are, but I am learning.
Having this disease has been an unbelievable lesson in humility. I have had to accept that there are going to be a great many things I cannot do along the way. It becomes a sort of internal struggle with my pride. It is quite surreal at times. I was so weak at points over the past week that I had trouble doing the simplest things, like tying my shoes or picking up my pills out of the pillbox or giving myself my shot. And I have to fight the urge to make excuses for myself...to somehow justify in my own mind why I need help with these things.
But it doesn't matter Why.
What matters is that I did need help.
Chris is so utterly amazing with me when these things happen. I am so stubborn and so independent that I will sit and struggle with shoelaces when my hands are obviously not working at that particular moment and I curse the shoes and curse my hands and there stands my husband nearby, watching and waiting. And I look up at him and curse my hands and shoes again. And he waits.
And then if I am really being stubborn he will calmly say,
"Caroline, is there something you would like to ask?"
And I breathe. And I tell that bothersome thing known as Pride to be quiet and I say,
"Honey, can you please help me tie this shoelace?"
and 5 seconds later we are good to go.
Obviously this does not happen every day. The past week has been exceptionally bad and I have needed more help with simple things than usual. But even if I am having a Great day/week/month the lesson is one that applies, regardless of whether a person is disabled or not:
People need help sometimes. And to get help, you have to ask for it.
Sure, sometimes you get really lucky and someone anticipates and offers help or that one special friend reads your mind and does the thing she knows you need most. But for the most part you gotta Ask for what you want or need.
That is so easy to say, and SO much harder to actually do. It takes a lot of pride-swallowing, humility and acceptance of your faults and shortcomings, be they physical, emotional or otherwise. But when you are brave enough to ask for help something amazing happens. People say yes, and they are in fact, honored that you asked. And then something even stranger happens. These little things add up and they bring you closer to people and you find yourself having deeper more meaningful relationships with those you love. And while having a day when you can't drive or can't tie your own shoelaces really sucks...knowing that there are people out there that love you enough to do those things for you...well, that's really pretty awesome. :-)
XOXO
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