One of the most frustrating things about this illness is that it shortens my days. A regular person gets, say 12, 14 waking hours to work, to play, to live and to love. Some days I feel like I get 4, maybe 6 hours where I can get anything done and therefore must plan each day accordingly.
I read a great story on patientslikeme.com (an online community for people with diseases like MS, Parkinsons, ALS, HIV/AIDS, etc) and I just had to put it on my blog:
The Spoon Theory:
My best friend and I were in the diner talking. As usual, it was very late and we were eating French Fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college. Most of the time we spent talking about boys, music or trivial things that seemed very important at the time.We never got serious about anything in particular and spent most of our time laughing. As I went to take some of my vitamins with a snack as I usually did, she watched me this time with a kind of start, instead of continuing the conversation.
She then asked me out of the blue what it felt like to have MS and be sick. I was shocked, not only because she asked the random question but also, I assumed she knew all there was to know about MS. She had come to the doctors with me, seen me getting MRI's, she saw me stumble on sidewalks and have to sit down at a concert. She carried me out when I couldn't walk another step, what else was there to know? I started to ramble on about the vitamins and the changes but she didn't seem satisfied with my answers.
Then she looked at me with a face every sick person knows well...the face of pure curiosity about something no healthy person can truly understand. She asked what it felt like, not physically, but what it felt like to me...having MS.
I glanced around the table for help or guidance, or at least to stall. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being affected, and give the emotions a person with MS goes through every day with clarity? I could have given up and cracked a joke like I usually do, and changed the subject, but I remember thinking if I don't try to explain this, how could I ever expect her to understand? If I can't explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the Spoon Theory was born. I quickly grabbed every spoon on the table. Hell, I grabbed spoons off other tables. I looked her in the eyes and said, "Here you go. You have MS." She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked together as I shoved them into her hands. I explained that the difference between having MS and being healthy is having to make choices, or to think consciously about things when the rest of the world doesn't have to.
The healthy have the luxury of choice, a gift most people take for granted. Most people start the day with an unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects their actions will have. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to take away, since most people who get MS feel the "loss" of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case MS, in control.
I asked her to count the spoons. I explained that the spoons represented units of energy. When you are healthy you expect to have a never-ending supply of spoons. But when you have MS you have to plan your day and you need to know exactly how many spoons you are starting with. It doesn't guarantee you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started the game yet! I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has MS.
I asked her to list off her day, including the most simple tasks. As she rattled off daily chores, or just fun things to do I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off. Showering cost her a spoon, just washing her hair and shaving her legs. Reaching too high or low, or having the shower water too hot and choosing to blow dry her hair would have cost more than one spoon but I didn't want to scare her too much in the beginning. Getting dressed is worth another spoon. I stopped her and broke down every task to show her how every detail needs to be thought about. You have to see what clothes you can physically put on, what shoes are going to be appropriate for the days walking requirements. If I have bruising from my medication, long sleeves might be in order. You cannot simply throw clothes on when you have MS...it's just not that easy.
I think she started to understand when she theoretically didn't even get to work yet and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your spoons are gone, They Are Gone. Sometimes you can borrow against tomorrow's spoons but just think how hard tomorrow will be with less spoons. I also needed to explain that a person who has MS lives with the looming thought that tomorrow may be the day that a fever comes, or an infection, or a relapse or any number of things that could prove disabling. So you do not want to run low on spoons, because you never know when you truly will need them. I didn't want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of the real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing on her computer for too long. She was forced to make choices and to think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night. When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had two spoons left. If she cooked, she wouldn't have enough energy to do the dishes. If she went out to dinner, she might be too tired to drive home safely without having blurred vision. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores but you can't do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn't want my friend to be upset, but at the same time I was happy to think maybe finally someone understood me a little bit. She had tears in her eyes and asked quietly, "Christine, how do you do it? Do you really do this everyday?" I answered that some days were worse than others and some days I have more spoons than most. But I can never make it go away and I can't ever for a minute forget about it. I handed her a spoon I had been holding in my pocket. I said simply, "I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared."
The hardest thing I ever had to learn is to slow down and not to do everything. I fight this every day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel the frustration. I wanted her to understand that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather and my own body before I can attack any one thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between having a chronic illness and being healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count my spoons.
Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug and we walked out of the diner. I had one spoon in my hand and I said, "Don't worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste every day? I don't have room to waste them, and I choose to spend this time with you."
Ever since this night, I have used the Spoon Theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory, they seem to understand me better, but I also think they look at their own life a little differently. I give a piece of myself, in every sense of the words, every time I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my spoons.
Saturday, March 29, 2008
Stable...yet Relapsing...
Quick blog from me:
Yesterday's appt at Shepherd went as well as could be expected. They showed us my MRI from last week and deemed it "stable". There was one little spot that looked slightly bigger than last time, but not enough to mean anything or cause concern from my doctors. Yay for good news!
As for the relapse I am currently fighting, it is just going to take some time. They said maybe even 6 weeks or longer to feel completely normal again (or as normal as a person with MS ever feels!) That made me kind of mad. 6 weeks is a long time to have vertigo and mind-splitting pain in your arms. So then we changed some of my dosage around for the bouquet of wacky pills I am on to manage this pain. (Sorry folks, no exciting opiates...just drugs that only work on people with nerve damage in their brains!) Then she gave me a Scopalomine patch to put behind my ear to see if it helps with the vertigo. Being able to drive again would be a huge help. I wasn't driving all that much anyway with my stupid vision, but it really stinks feeling too dizzy to even drive the 1/4 mile to the grocery store!
So that's where we are.
Patience is a virtue.
Slow and steady wins the race.
And when all else fails, chocolate really does make things better.
XOXO
Yesterday's appt at Shepherd went as well as could be expected. They showed us my MRI from last week and deemed it "stable". There was one little spot that looked slightly bigger than last time, but not enough to mean anything or cause concern from my doctors. Yay for good news!
As for the relapse I am currently fighting, it is just going to take some time. They said maybe even 6 weeks or longer to feel completely normal again (or as normal as a person with MS ever feels!) That made me kind of mad. 6 weeks is a long time to have vertigo and mind-splitting pain in your arms. So then we changed some of my dosage around for the bouquet of wacky pills I am on to manage this pain. (Sorry folks, no exciting opiates...just drugs that only work on people with nerve damage in their brains!) Then she gave me a Scopalomine patch to put behind my ear to see if it helps with the vertigo. Being able to drive again would be a huge help. I wasn't driving all that much anyway with my stupid vision, but it really stinks feeling too dizzy to even drive the 1/4 mile to the grocery store!
So that's where we are.
Patience is a virtue.
Slow and steady wins the race.
And when all else fails, chocolate really does make things better.
XOXO
Monday, March 24, 2008
Saturday, March 22, 2008
DNR?!?!
Ever since Friday morning this incident has been on my mind...
It was my first day of my IV Solu-Medrol infusion. The nurse arrived at our house, set up my IV and then we had to fill out the required pounds of paperwork. Questions range from things about my current symptoms to where am I on the pain scale to what is my official diagnosis, who is my doctor, etc etc. But then came a question that I was never expecting to hear...and it was a good thing I was sitting down. My nurse asks me,
"In the event that your heart stops and/or you stop breathing, do you want me to perform CPR?"
Chris was in the living room where he overheard this, looked up and proceeded to turn green as he ran over stuttering,
"Wha-Uh-Huh-Well-Wha??"
I managed to blink a few times and quickly spat out,
"Um, yes. Of course! I want CPR. I would like to live please."
Chris' color came back, my nurse circled Yes, and onto the next question...
But I could not stop thinking about that question on that form.
Sure, I understand if the patient is dying from terminal cancer and there is very left for the doctors to do and they are in immense pain. I understand it for people with ALS (Lou Gehrig's disease) which is also fatal, painful and increasingly devastating. They fill out a DNR order.
It is not an uncommon thing for terminally ill people, right?
But Multiple Sclerosis is not considered a fatal disease. Incurable, sure, but not fatal. So why is this nurse basically asking me if I want to be considered DNR?
That night as I layed in bed desperately wanting to go to sleep, but writhing in so much pain I was sure every nerve in both legs was dying or lit on fire...I thought, you know, I am dealing with excruciating pain for hopefully only a few days/weeks, and then *hopefully* it will go back to occasional/bearable pain. But what if I was an MS patient with constant excruciating pain? What if I was an MS patient who has lost use of both arms and legs? How much pain and disability would it take for someone to want to be DNR? What about the people that are essentially alone in their fight and don't have the support system I have (or the incredible team of doctors, nurses helping me through this journey)?
It really got me to thinking about something I heard recently: the suicide rate is 7.5 times higher for people living with MS than for the general population. There are many studies about this, and doctors debate whether it is the devastating symptoms of MS that lead people down this path OR if the intense depression often cause by Interferon (the leading treatment for MS) is the culprit OR if the depression is a direct symptom of the MS, caused by dymelination in the brain. It is enough to make anyone dizzy just thinking about it.
Now listen up people: Don't worry- this is NOT a cry for help. I have NO plans to off myself in any way, shape or form. I have so many doctors constantly assessing me for even the least little sign of serious depression. Apparently with Interferon you can be fine one day, then BAM! depression kicks in violently and without reprieve. It is why alot of people cannot tolerate these drugs. Many neurologists recommend adding an anti-depressant as a preventative measure as soon as you start taking Interferon. And on the really bad days when your body is searing with pain and walking around your own house is a great effort, falling into a deep depression might seem like a logical, even comforting choice. But that's just not my style. ;-)
I am pretty strong-willed and I think it would take a whole hell of a lot for me to ever consider something like a DNR order. And when I feel my absolute worst, here is what I do:
- I call friends and family and ask for help, be it taking me to the movies, making dinner, bringing over ice cream or sending Hallmark cards. I let people in to care for me, so I don't feel so alone.
- I get fired up about my MS fundraising. I send emails and thank you notes to supporters and solicit more supporters and I get my team fired up about walking in their red shoes!
- I write on my blog, which has been invaluable as a place to let out my thoughts and feelings, to work through them all and find peace with this crazy disease and this crazy world.
DNR? Hell. No. I've got a LOT of living to do....
It was my first day of my IV Solu-Medrol infusion. The nurse arrived at our house, set up my IV and then we had to fill out the required pounds of paperwork. Questions range from things about my current symptoms to where am I on the pain scale to what is my official diagnosis, who is my doctor, etc etc. But then came a question that I was never expecting to hear...and it was a good thing I was sitting down. My nurse asks me,
"In the event that your heart stops and/or you stop breathing, do you want me to perform CPR?"
Chris was in the living room where he overheard this, looked up and proceeded to turn green as he ran over stuttering,
"Wha-Uh-Huh-Well-Wha??"
I managed to blink a few times and quickly spat out,
"Um, yes. Of course! I want CPR. I would like to live please."
Chris' color came back, my nurse circled Yes, and onto the next question...
But I could not stop thinking about that question on that form.
Sure, I understand if the patient is dying from terminal cancer and there is very left for the doctors to do and they are in immense pain. I understand it for people with ALS (Lou Gehrig's disease) which is also fatal, painful and increasingly devastating. They fill out a DNR order.
It is not an uncommon thing for terminally ill people, right?
But Multiple Sclerosis is not considered a fatal disease. Incurable, sure, but not fatal. So why is this nurse basically asking me if I want to be considered DNR?
That night as I layed in bed desperately wanting to go to sleep, but writhing in so much pain I was sure every nerve in both legs was dying or lit on fire...I thought, you know, I am dealing with excruciating pain for hopefully only a few days/weeks, and then *hopefully* it will go back to occasional/bearable pain. But what if I was an MS patient with constant excruciating pain? What if I was an MS patient who has lost use of both arms and legs? How much pain and disability would it take for someone to want to be DNR? What about the people that are essentially alone in their fight and don't have the support system I have (or the incredible team of doctors, nurses helping me through this journey)?
It really got me to thinking about something I heard recently: the suicide rate is 7.5 times higher for people living with MS than for the general population. There are many studies about this, and doctors debate whether it is the devastating symptoms of MS that lead people down this path OR if the intense depression often cause by Interferon (the leading treatment for MS) is the culprit OR if the depression is a direct symptom of the MS, caused by dymelination in the brain. It is enough to make anyone dizzy just thinking about it.
Now listen up people: Don't worry- this is NOT a cry for help. I have NO plans to off myself in any way, shape or form. I have so many doctors constantly assessing me for even the least little sign of serious depression. Apparently with Interferon you can be fine one day, then BAM! depression kicks in violently and without reprieve. It is why alot of people cannot tolerate these drugs. Many neurologists recommend adding an anti-depressant as a preventative measure as soon as you start taking Interferon. And on the really bad days when your body is searing with pain and walking around your own house is a great effort, falling into a deep depression might seem like a logical, even comforting choice. But that's just not my style. ;-)
I am pretty strong-willed and I think it would take a whole hell of a lot for me to ever consider something like a DNR order. And when I feel my absolute worst, here is what I do:
- I call friends and family and ask for help, be it taking me to the movies, making dinner, bringing over ice cream or sending Hallmark cards. I let people in to care for me, so I don't feel so alone.
- I get fired up about my MS fundraising. I send emails and thank you notes to supporters and solicit more supporters and I get my team fired up about walking in their red shoes!
- I write on my blog, which has been invaluable as a place to let out my thoughts and feelings, to work through them all and find peace with this crazy disease and this crazy world.
DNR? Hell. No. I've got a LOT of living to do....
Friday, March 21, 2008
I'm Not Drunk...I Have MS!
Well according to the lovely people at Shepherd Spinal Center I am having a "relapse". We did the MRI (will probably get results next week) and started me on a 3 day course of IV Solu-Medrol. Not fun, but necessary if I want to end this relapse as quickly as possible.
So after my IV yesterday I was dying to get out the house. I covered my tubes up with this cool Michael-Jackson-circa-1985 sleeve thing (if only it were silver!) and our friends Steven & Tiffany picked us up to go grab a sandwich and see a movie.
My vertigo and numbness in my feet had gotten significantly worse yesterday so I was being extra careful to hold on to people, walls, etc so as not to take a nasty fall and add to my medical drama! So we are walking into the movie theater, Chris is holding popcorn & twizzlers, Steven is holding drinks and Tiffany is holding me. I was leaning pretty heavily on her and stumbled a few times as we walked towards our seats. We passed this older gentlemen on his way back out for popcorn or something...and then we all heard this quite audible, "Hmmmph". Not only was it loud enough for us to hear, it was quite disapproving. We all quickly came to the same conclusion:
This man thinks I am conpletely drunk.
He thinks I am so drunk I cannot even stand up on my own and my friends are dragging me to the movies in hopes of sobering me up with some popcorn.
And frankly, if I had seen me stumbling to my seat, hanging onto Tiffany for dear life, I probably would have thought I was drunk, too!
So it was this huge realization for me...when in the middle of an ass-kicking relapse where I look fairly intoxicated, I have 3 choices:
1. Rely on my family and friends and literally lean on them to get around places and inevitably have strangers and small children think I am the Town Drunk.
2. Use some sort of mobility assistance device; a cane or walking stick and have strangers and small children realize I am...Disabled.
3. Wear my "I'm not Drunk...I Have MS" tshirt (yes I do own one!) and share the fact the I am disability and sick sense of humor with everyone I meet.
While 3 is possibly my favorite, you have to be in the right mood to pull it off. I wore it to my appt at Shepherd and people went nuts for it, laughing and nodding with approval.
In all honesty I dont particularly care if people think I am drunk...though there were a gaggle of tween girls there last night and I felt as if I was setting a poor example for them.
So if I decide to use a cane or walking stick during these bad days, I will have to do a bit of pride swallowing, but i also am showing the world that it is ok to be "disabled" and need help and I am still every bit just as fabulous and Not drunk!
It will take some experimenting for sure. And hopefully I will be back to my non-vertigo self soon and able to walk straight on my own!
In the meantime, Happy Easter to everyone!
If you have adorable children, I expect pictures to be emailed of easter egg hunts, and kids all dressed up looking precious!
XOXO
So after my IV yesterday I was dying to get out the house. I covered my tubes up with this cool Michael-Jackson-circa-1985 sleeve thing (if only it were silver!) and our friends Steven & Tiffany picked us up to go grab a sandwich and see a movie.
My vertigo and numbness in my feet had gotten significantly worse yesterday so I was being extra careful to hold on to people, walls, etc so as not to take a nasty fall and add to my medical drama! So we are walking into the movie theater, Chris is holding popcorn & twizzlers, Steven is holding drinks and Tiffany is holding me. I was leaning pretty heavily on her and stumbled a few times as we walked towards our seats. We passed this older gentlemen on his way back out for popcorn or something...and then we all heard this quite audible, "Hmmmph". Not only was it loud enough for us to hear, it was quite disapproving. We all quickly came to the same conclusion:
This man thinks I am conpletely drunk.
He thinks I am so drunk I cannot even stand up on my own and my friends are dragging me to the movies in hopes of sobering me up with some popcorn.
And frankly, if I had seen me stumbling to my seat, hanging onto Tiffany for dear life, I probably would have thought I was drunk, too!
So it was this huge realization for me...when in the middle of an ass-kicking relapse where I look fairly intoxicated, I have 3 choices:
1. Rely on my family and friends and literally lean on them to get around places and inevitably have strangers and small children think I am the Town Drunk.
2. Use some sort of mobility assistance device; a cane or walking stick and have strangers and small children realize I am...Disabled.
3. Wear my "I'm not Drunk...I Have MS" tshirt (yes I do own one!) and share the fact the I am disability and sick sense of humor with everyone I meet.
While 3 is possibly my favorite, you have to be in the right mood to pull it off. I wore it to my appt at Shepherd and people went nuts for it, laughing and nodding with approval.
In all honesty I dont particularly care if people think I am drunk...though there were a gaggle of tween girls there last night and I felt as if I was setting a poor example for them.
So if I decide to use a cane or walking stick during these bad days, I will have to do a bit of pride swallowing, but i also am showing the world that it is ok to be "disabled" and need help and I am still every bit just as fabulous and Not drunk!
It will take some experimenting for sure. And hopefully I will be back to my non-vertigo self soon and able to walk straight on my own!
In the meantime, Happy Easter to everyone!
If you have adorable children, I expect pictures to be emailed of easter egg hunts, and kids all dressed up looking precious!
XOXO
Tuesday, March 18, 2008
Just ask
Call it pride or stubbornness but I have always had a very difficult time asking people for things. I think asking for things, especially for help is hard for a lot of people. To ask for help is to admit you are vulnerable. And letting ourselves be vulnerable, even with the people we love, can be very hard.
Oh and in other quick news, my feet both started giving me problems yesterday. They went pins&needles/tingling/numb after breakfast and stayed messed up since then. Still mostly numb except that when I walk it feels like walking on...well, pins&needles, which sorta hurts! I think my body is officially staging a coup. It is trying to tell me something is wrong here. I just hope the lovely people at Shepherd Center can help translate what it is trying to tell me.
I wonder sometimes if I cover too much up with humor (my favorite fallback defense mechanism). Certainly I have my moments of being angry or crying and grieving the loss of good health, but I guess I don't share those with the general public much, other than blogging about it. I feel guilty that I can no longer do so many things that once came easily for me. I feel even guiltier having to ask for help with those things.
But generally speaking, people usually want to help someone they love. It makes us feel wanted and needed and important and connected to someone to be able to help them. My friend and WalkMS teammate, Tiffany made us dinner last night. Between the dizziness and the feet, standing to cook was a no-go and while I am sure my husband could have put something together, what a wonderful treat to have a delicious home-cooked meal simply appear! And if you ever have the pleasure of eating Tiffany's cooking...you are in for a gourmet experience. She is amazing.
Numerous friends have also offered their chaffeur services (and trust me, I WILL take you all up on it!) Even when you feel like crapola you occasionally still need to get out of the house for some mexican food, or ice cream...or both!
Asking for help is not admitting defeat. It is simply allowing youself to admit that No One should have to ride life's crazy roller coaster alone. And honestly a roller coaster is much more fun with your loved ones next to you, screaming and laughing and thrilled and scared right alongside you.
Off to Shepherd Center in the morning...wish me luck and good solutions from my team there. Will follow up about it asap.
XOXO
Oh and in other quick news, my feet both started giving me problems yesterday. They went pins&needles/tingling/numb after breakfast and stayed messed up since then. Still mostly numb except that when I walk it feels like walking on...well, pins&needles, which sorta hurts! I think my body is officially staging a coup. It is trying to tell me something is wrong here. I just hope the lovely people at Shepherd Center can help translate what it is trying to tell me.
I wonder sometimes if I cover too much up with humor (my favorite fallback defense mechanism). Certainly I have my moments of being angry or crying and grieving the loss of good health, but I guess I don't share those with the general public much, other than blogging about it. I feel guilty that I can no longer do so many things that once came easily for me. I feel even guiltier having to ask for help with those things.
But generally speaking, people usually want to help someone they love. It makes us feel wanted and needed and important and connected to someone to be able to help them. My friend and WalkMS teammate, Tiffany made us dinner last night. Between the dizziness and the feet, standing to cook was a no-go and while I am sure my husband could have put something together, what a wonderful treat to have a delicious home-cooked meal simply appear! And if you ever have the pleasure of eating Tiffany's cooking...you are in for a gourmet experience. She is amazing.
Numerous friends have also offered their chaffeur services (and trust me, I WILL take you all up on it!) Even when you feel like crapola you occasionally still need to get out of the house for some mexican food, or ice cream...or both!
Asking for help is not admitting defeat. It is simply allowing youself to admit that No One should have to ride life's crazy roller coaster alone. And honestly a roller coaster is much more fun with your loved ones next to you, screaming and laughing and thrilled and scared right alongside you.
Off to Shepherd Center in the morning...wish me luck and good solutions from my team there. Will follow up about it asap.
XOXO
Monday, March 17, 2008
*quick update*
After a weekend filled with stumbling, walking into walls and generally looking like a drunk person AND the added bonus of an arm on fire I called Shepherd back this morning. The could see me in TWO weeks. I said No thanks. I called my favorite nurse Ralph back. He called me back. Said he could fit me in Thursday but was still trying to get me in even sooner to be evaluated. I have no clue how they will evaluate whether or not this is a true "relapse" (aka "flare-up", "exacerbation", "detour", etc). Maybe they will scan my brain? Or just decide based on my new symptoms? Will they put more needles and tubes in my arms and pump me full of exciting drugs?? I dunno...
I am new at this relapse business as I was really hoping for that type of MS that is known as "benign"...where you have an inital smattering of symptoms that slowly fade over time and then go 10 or 15 years without ever having any other problems. I am beginning to think "benign MS" is a mythical creature that only exists in fairytales. Or at any rate, it doesn't exist in my fairytale. Mine is more the ugly, fire-breathing dragon that even after you stab it with the magical sword never quite seems to die!
Local folks: I may be calling upon you this week for help...my Mommy is out of town :-( and I have been far too dizzy to drive. might need some grocery help and/or food procurement and/or chaffeuring and/or ice cream and chocolate to beat the relapse blues! Will be buggin yall soon.
Happy St. Patricks Day! May the luck of Irish be with us all!
I am new at this relapse business as I was really hoping for that type of MS that is known as "benign"...where you have an inital smattering of symptoms that slowly fade over time and then go 10 or 15 years without ever having any other problems. I am beginning to think "benign MS" is a mythical creature that only exists in fairytales. Or at any rate, it doesn't exist in my fairytale. Mine is more the ugly, fire-breathing dragon that even after you stab it with the magical sword never quite seems to die!
Local folks: I may be calling upon you this week for help...my Mommy is out of town :-( and I have been far too dizzy to drive. might need some grocery help and/or food procurement and/or chaffeuring and/or ice cream and chocolate to beat the relapse blues! Will be buggin yall soon.
Happy St. Patricks Day! May the luck of Irish be with us all!
Saturday, March 15, 2008
Trouble?
This will be short. i'm sorry. Also i am about 5 days behind on returning emails/phone calls in general and i'm sorry for that too!
Last sunday i mentioned the dizziness/balance issues, which i thought were no big deal but yesterday afternoon the dizziness got alot worse and was accompanied by searing pain in my right arm. i have a pretty high pain threshold i think, but dude-this pain ranks a solid 3rd under spinal tap and root canal. like a knife lit on fire stabbing your arm repeatedly bring tears to your eyes sorta pain. :-( not pleasant. as the day went on i could not walk to the bathroom without holding on to the walls because the room was spinning and moving out of control.
needless to say i called shepherd. they basically said they could not consider it a "relapse" unless the new symptoms have lasted 48 hrs or more. So I have been maxing out on lyrica and baclofen and walking into walls and seriously considering taking some of that leftover percoset from my surgery last year!! it has been 24 hrs. if things dont improve by tomorrow afternoon then i call my dr and see what he wants to do? i guess?
i am a little scared and alot frustrated. the other day i was just thinking about what i wanted to do for my one yr MS anniversary...i thought i should do something really fun and upbeat and happy on a day that holds awful sad memories. ya know...show the MonSter who's boss and that it cannot ruin any day of the year for me gosh darnnit. but it never ever occured to me that i might have a second "relapse" in my first year of living with MS. i guess it should have. but i just wanted to be optimistic and hope for the best. what else can you do?
"Expect trouble as an inevitable part of life and when it occurs, hold your head high, look it squarely in the eye and say,'I will be bigger than you. You cannot defeat me.'" - Ann Landers
will try and update tomorrow afternoon/evening. and if you havent already, dont forget to support us in WalkMS. the possibility of this being a relapse makes me even more excited and ready to raise some serious dough to support MS research so we can tell the MonSter that it can and WILL be defeated.
I love you all.
XOXO
Last sunday i mentioned the dizziness/balance issues, which i thought were no big deal but yesterday afternoon the dizziness got alot worse and was accompanied by searing pain in my right arm. i have a pretty high pain threshold i think, but dude-this pain ranks a solid 3rd under spinal tap and root canal. like a knife lit on fire stabbing your arm repeatedly bring tears to your eyes sorta pain. :-( not pleasant. as the day went on i could not walk to the bathroom without holding on to the walls because the room was spinning and moving out of control.
needless to say i called shepherd. they basically said they could not consider it a "relapse" unless the new symptoms have lasted 48 hrs or more. So I have been maxing out on lyrica and baclofen and walking into walls and seriously considering taking some of that leftover percoset from my surgery last year!! it has been 24 hrs. if things dont improve by tomorrow afternoon then i call my dr and see what he wants to do? i guess?
i am a little scared and alot frustrated. the other day i was just thinking about what i wanted to do for my one yr MS anniversary...i thought i should do something really fun and upbeat and happy on a day that holds awful sad memories. ya know...show the MonSter who's boss and that it cannot ruin any day of the year for me gosh darnnit. but it never ever occured to me that i might have a second "relapse" in my first year of living with MS. i guess it should have. but i just wanted to be optimistic and hope for the best. what else can you do?
"Expect trouble as an inevitable part of life and when it occurs, hold your head high, look it squarely in the eye and say,'I will be bigger than you. You cannot defeat me.'" - Ann Landers
will try and update tomorrow afternoon/evening. and if you havent already, dont forget to support us in WalkMS. the possibility of this being a relapse makes me even more excited and ready to raise some serious dough to support MS research so we can tell the MonSter that it can and WILL be defeated.
I love you all.
XOXO
Sunday, March 9, 2008
Coping
"The strength to get by...it is understated and powerful.
Coping is quiet. There is no fanfare, no confetti. There are no parades.
Just a quiet task aimed at emotional well-being, if not survival, pursued in subdued and sober tones and spoken in whispers, not shouts.
The formula for successful coping rests in the eye of the beholder.
There is no magic.
Making peace is not a one-shot deal but an effort that spans a lifetime. "
- Richard M. Cohen
I collect quotes. I started collecting them the summer after I graduated high school. I have 2 journals full of them now (one a lovely book, handmade by my dear friend Kimmy). They are a diary of sorts, only filled with other people's words that have given me inspiration, hope, courage and much more over the past decade. There are lots of quotes on coping out there, but the above quote is from a fellow MSer and it really spoke to me.
I am having trouble coping today. I am in pain. I am angry. My vision is terrible. I almost fell down twice today (and no, I wasn't even drinking!) Once I lost my balance standing in the middle of the living room. The living room seemed to move under me and I almost fell right on my butt, but somehow managed to catch myself before that happened. I almost gave Chris a heart attack. Then I fell right into my husband while standing next to him at dinner tonight. If he hadn't been standing there I guess I might have crashed onto the floor. He noticed and was grateful to have caught me that time.
I am dizzy sitting here typing. The room keeps moving like I am on a boat out at sea. Then it stops and I feel better. Thank God it comes and goes. I don't know how people stand constant vertigo.
So a couple of months ago I noticed I was having some ringing in my ears every so often. It would come and go. Mildly annnoying. Then it became worse and louder and now it is constant. Yeah. Constant. Luckily if I surround myself with noise I can ignore it pretty well. But if a place is quiet, or more importantly when I am trying to go to sleep it becomes unbearable. It has really been affecting my sleep. And sometimes the ringing gets so loud I swear I want to rip my ears right off of my head to get it to stop. It is maddening.
I saw my ENT who tested my hearing and I don't have any hearing loss (which can sometimes be associated with tinnitus, aka ringing in the ears) So that's good news. So it is most likely neurological (aka could be just another MonSter trick) OR it could be a side effect of my interferon injections. Interferon comes with a whole host of horrible potential side effects so I guess ringing ears might be on the list? At least now you will understand if you come over to my house and I have music playing in every room...I am merely trying to drown out this incessant ringing!!! Well that and I do love music! :-)
It feels a bit like juggling. I can manage numerous unpleasant symptoms at any given time, on any given day. I can do my injections and not whine too much about them. I can adjust to not seeing well. But then occasionally I reach a point where I need someone to take one of them away. I am no Kempton Mooney. I can only juggle a few things at a time. I can juggle double vision+burning neuropathic pain+numbness+boa constrictor+fatigue, but I cannot add ringing ears right now. I need to improve my juggling skills please. I just need a little more time to adjust OR if I could have my vision back or feel my feet THEN I can do ringing ears. But not all of it at once. Pretty please?
If only it worked like that and I could bargain with the MonSter.
But he doesn't do bargaining, and even if he did...he just isn't trustworthy to keep up his end of any bargain.
So I am coping.
There is no magic, just the slow process of making peace with it all...
Coping is quiet. There is no fanfare, no confetti. There are no parades.
Just a quiet task aimed at emotional well-being, if not survival, pursued in subdued and sober tones and spoken in whispers, not shouts.
The formula for successful coping rests in the eye of the beholder.
There is no magic.
Making peace is not a one-shot deal but an effort that spans a lifetime. "
- Richard M. Cohen
I collect quotes. I started collecting them the summer after I graduated high school. I have 2 journals full of them now (one a lovely book, handmade by my dear friend Kimmy). They are a diary of sorts, only filled with other people's words that have given me inspiration, hope, courage and much more over the past decade. There are lots of quotes on coping out there, but the above quote is from a fellow MSer and it really spoke to me.
I am having trouble coping today. I am in pain. I am angry. My vision is terrible. I almost fell down twice today (and no, I wasn't even drinking!) Once I lost my balance standing in the middle of the living room. The living room seemed to move under me and I almost fell right on my butt, but somehow managed to catch myself before that happened. I almost gave Chris a heart attack. Then I fell right into my husband while standing next to him at dinner tonight. If he hadn't been standing there I guess I might have crashed onto the floor. He noticed and was grateful to have caught me that time.
I am dizzy sitting here typing. The room keeps moving like I am on a boat out at sea. Then it stops and I feel better. Thank God it comes and goes. I don't know how people stand constant vertigo.
So a couple of months ago I noticed I was having some ringing in my ears every so often. It would come and go. Mildly annnoying. Then it became worse and louder and now it is constant. Yeah. Constant. Luckily if I surround myself with noise I can ignore it pretty well. But if a place is quiet, or more importantly when I am trying to go to sleep it becomes unbearable. It has really been affecting my sleep. And sometimes the ringing gets so loud I swear I want to rip my ears right off of my head to get it to stop. It is maddening.
I saw my ENT who tested my hearing and I don't have any hearing loss (which can sometimes be associated with tinnitus, aka ringing in the ears) So that's good news. So it is most likely neurological (aka could be just another MonSter trick) OR it could be a side effect of my interferon injections. Interferon comes with a whole host of horrible potential side effects so I guess ringing ears might be on the list? At least now you will understand if you come over to my house and I have music playing in every room...I am merely trying to drown out this incessant ringing!!! Well that and I do love music! :-)
It feels a bit like juggling. I can manage numerous unpleasant symptoms at any given time, on any given day. I can do my injections and not whine too much about them. I can adjust to not seeing well. But then occasionally I reach a point where I need someone to take one of them away. I am no Kempton Mooney. I can only juggle a few things at a time. I can juggle double vision+burning neuropathic pain+numbness+boa constrictor+fatigue, but I cannot add ringing ears right now. I need to improve my juggling skills please. I just need a little more time to adjust OR if I could have my vision back or feel my feet THEN I can do ringing ears. But not all of it at once. Pretty please?
If only it worked like that and I could bargain with the MonSter.
But he doesn't do bargaining, and even if he did...he just isn't trustworthy to keep up his end of any bargain.
So I am coping.
There is no magic, just the slow process of making peace with it all...
Tuesday, March 4, 2008
Shot Night
My father is a Pediatrician...a very good, actually. I am fairly certain he realized early on that his daughter would NOT be following in his footsteps, and I am fairly certain that this realization came when he realized that I was a bit squeamish around things like needles and blood.
Now to be fair, I am sure no one out there really enjoys needles. But some people do better than others. My husband has given blood to the Red Cross every year for as long as I can remember, as do many people. As for me? Oh no...I never gave blood. Never. The thought of purposefully choosing to have needles stuck in me and my lifeforce drained out of me (only a pint, but still!) just seemed horribly, horribly awful. Not to mention every time I ever had to give blood in the form of a finger prick or one small vial...I basically passed out. And I am really pale to begin with, so when I turn "white as a sheet", I practically turn blue. I think I scared alot of poor lab techs over the years with my theatrics. But I couldn't help it! Needles make me want to faint!
Correction: Needles used to make me want to faint.
Then came last summer when I was told that the only surefire way to slow the progression of my degenerative disease was to Inject myself...with NEEDLES. I was terrified. I was sure there was no way I could A) endure injections for the rest of my life and B) actually stick myself with said injections!
I now take Betaseron, which is a sub-cutaneous (aka "under the skin") injection I do every other day. Some days it is just part of the routine. I wash my face, I brush my teeth, we watch the Daily Show, I inject myself with immune-suppressants, I try and read a page or two of my book, or my eyes aren't working and I cuddle with my husband while he reads and we both fall asleep. No big deal. Other days I am pretty sure I would rather take on a pack of wild boars than have to stick myself with Another needle.
Sometimes it doesn't even hurt. Sometimes I swear I have managed to find the one-inch patch on my body where all my nerves are bundled together and it stings horribly and then afterwards it is Still sore. Sometimes it bleeds horribly and then bruises even worse. Sometimes I can't even find the injection site after I do it. Sometimes I am able to imagine it as a shiny, iridescent magical potion which whooshes into my body and then fills me with shiny, iridescent (very tiny) MS-fighting mermaids that swim up towards my brain and whack MS with their mermaid tails! Ok, really, I only imagined that ONE time, but I might have had too many Lyrica/Baclofen/Klonipin cocktails that night...I dunno. ;-)
Most "shot nights" I just want to pretend that it isn't "shot night" and crawl into bed and fall asleep. But then I remember why I do it. I do it to piss off the MonSter and let him know that I am not giving up any time soon and I that I intend to give him a war to remember. I do it so that I can have more Good Days than Bad Days. I do it so I can stay as healthy and as lesion-free for as long as humanly possible. Forever would be best.
Now to be fair, I am sure no one out there really enjoys needles. But some people do better than others. My husband has given blood to the Red Cross every year for as long as I can remember, as do many people. As for me? Oh no...I never gave blood. Never. The thought of purposefully choosing to have needles stuck in me and my lifeforce drained out of me (only a pint, but still!) just seemed horribly, horribly awful. Not to mention every time I ever had to give blood in the form of a finger prick or one small vial...I basically passed out. And I am really pale to begin with, so when I turn "white as a sheet", I practically turn blue. I think I scared alot of poor lab techs over the years with my theatrics. But I couldn't help it! Needles make me want to faint!
Correction: Needles used to make me want to faint.
Then came last summer when I was told that the only surefire way to slow the progression of my degenerative disease was to Inject myself...with NEEDLES. I was terrified. I was sure there was no way I could A) endure injections for the rest of my life and B) actually stick myself with said injections!
I now take Betaseron, which is a sub-cutaneous (aka "under the skin") injection I do every other day. Some days it is just part of the routine. I wash my face, I brush my teeth, we watch the Daily Show, I inject myself with immune-suppressants, I try and read a page or two of my book, or my eyes aren't working and I cuddle with my husband while he reads and we both fall asleep. No big deal. Other days I am pretty sure I would rather take on a pack of wild boars than have to stick myself with Another needle.
Sometimes it doesn't even hurt. Sometimes I swear I have managed to find the one-inch patch on my body where all my nerves are bundled together and it stings horribly and then afterwards it is Still sore. Sometimes it bleeds horribly and then bruises even worse. Sometimes I can't even find the injection site after I do it. Sometimes I am able to imagine it as a shiny, iridescent magical potion which whooshes into my body and then fills me with shiny, iridescent (very tiny) MS-fighting mermaids that swim up towards my brain and whack MS with their mermaid tails! Ok, really, I only imagined that ONE time, but I might have had too many Lyrica/Baclofen/Klonipin cocktails that night...I dunno. ;-)
Most "shot nights" I just want to pretend that it isn't "shot night" and crawl into bed and fall asleep. But then I remember why I do it. I do it to piss off the MonSter and let him know that I am not giving up any time soon and I that I intend to give him a war to remember. I do it so that I can have more Good Days than Bad Days. I do it so I can stay as healthy and as lesion-free for as long as humanly possible. Forever would be best.
*Walk MS Update*
As of today Team Wearing Red Shoes has raised $2550...but you know that isn't enough for this overachiever! We have set our sights at $5000 and I have a team of champions (15 of my favorite people on earth) behind me.
We still have over a month to go, so there is still plenty of time to join us and/or donate to support us!
www.nationalmssociety.org/goto/wearingredshoes
*On a quick personal update, my new magical glasses came in but they were totally a bust! Something was wrong with the lenses and to make a long story short I had to take them back to the doctor and they are making me another pair which hopefully will be better.
Magic is apparently quite complicated! ;-)
We still have over a month to go, so there is still plenty of time to join us and/or donate to support us!
www.nationalmssociety.org/goto/wearingredshoes
*On a quick personal update, my new magical glasses came in but they were totally a bust! Something was wrong with the lenses and to make a long story short I had to take them back to the doctor and they are making me another pair which hopefully will be better.
Magic is apparently quite complicated! ;-)
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