Tuesday, December 15, 2009
The minute I felt the pain start in my tooth two weeks ago, part of me knew this was coming. I had hoped it wouldn't, but history has shown that it doesn't take much to piss off the beast and cause a relapse. Over the last week I've felt myself slowly slipping. First, the numbness and tingling returned to the left side of my face. Next my balance started to go, until now I can barely walk as I'm so dizzy it makes me nauseous. My eyes are also acting up, which always scares me, as a return of the horrible double vision is a major fear of mine. And of course, right on cue, my cognitive has sufficiently gone south leaving me a 'word fishing', stuttering, mess.
I finally contacted my doctor today, and as I thought he would, he immediately ordered another round of IV steroids. I swore I wouldn't do IV steroids again, yet here I go again. Unlike the last two times of starting the infusion many weeks into a full-blown relapse, this time I am starting almost immediately before things get severe. I am hoping, praying, that because of this it will be more effective than it was the last time. The sad fact is, I don't feel I have much other choice except to try again. I do not want to be relapsing over Christmas. Urgh.
What also sucks is the fact I can no longer do the infusion at home. Apparently, two months ago the insurance company stopped authorizing home treatment if it is less than five days long. So now, I have to go into the hospital outpatient three days in a row for the infusion. I am not happy about this. What a waste of time. I can do everything myself except insert the actual needle, it's ridiculous I now have to go have someone else do everything for me. *sighs*
So, that's where I am at. Expect another post soon once I start the infusion.
Be well all,
Sunday, November 15, 2009
Tonight, Josh drew me a picture of him and I standing hand in hand in the sunshine. On the back of the picture he wrote "I love you very much Mom. I hope your MS does not get worse. I hope they find a cure for your MS". When I flipped the picture over and saw that, I was both overwhelmed by love and sadness. I know my son truly loves me so much, but it also makes me so incredibly sad that a little boy of only 7 years old has to even know that the letters "M" and "S" together aren't just consonants but stand for a horrible disease.
He asks me about MS all the time lately. It started a few months ago, we were driving in the car and out of the blue he asked "Mommy, will I have MS?" I cringed. Logically, I know there's no way of knowing the answer to that, but how do you explain it to a child without scaring them? I forced a smile and reached back to rub his hand "No baby you won't have to worry about MS". He then continued "Mom, do only certain people get MS?" "Yes hun, only certain people get MS". A brief pause, then the million dollar question: "Why are you one of the certain people who got MS?"
Thus I tried as best I could to explain to him what many adults don't even understand, that no one knows why one person gets MS and another doesn't. Obviously, this lack of certainty didn't help matters much, in fact it only spurred more questions. "Why can't they cure MS? When will they be able to cure MS? Are you going to die?" I sighed as I answered all his questions as best I could in a language he could understand, and I focused one answer in particular "Baby I'm not going to die anytime soon, so please don't worry ok? MS isn't going to kill me"
As a mother, it is heartbreaking to have constantly reassure your child that you're not going to suddenly die and leave them. I have always firmly believed that having open, honest communication in a home is crucial, and me having MS is no different. My kids know they can ask me anything about it, talk about it, even be angry because of it. In that respect, I'm glad my son is comfortable to talk to me about his questions and fears so I can reassure him. But as a mom, it makes me want to cry that my little boy carries such adult fears with him at all.
I will continue to reassure my son as best I can, for as long as it takes. Tonight it was actually kind of neat though. I was in the kitchen putting away dishes and Josh came up "Mom, you know what? When I grow up I'm going to find the cure for MS so I can cure you". I smiled as I reached down to stroke his cheek. I thought to myself ...wow, how cool would that be? My son the next great researcher finding a cure for MS. It was in that moment I realized that while MS has definitely stolen some of his innocence too soon, it left some pretty amazing dreams and hopes in it's place. My heart melted with love for my little boy as I peered down into his gorgeous blue eyes "You know what Baby? I bet you will find the cure someday".
Don't ever lose your hopes and dreams :)
Monday, October 19, 2009
For those of you still looking at the title of this post going "what the heck is a DMD?" DMD's are Disease Modifying Drugs, essentially the injections those of us with RRMS (relapse/remitting MS) take to slow the disease's progression. As most of you already know, I am currently on Rebif. I have to say, my Copaxone days seem like a distant fond memory at this point. Rebif is simply brutal. I am having a horrible time with it.
My doctor and the drug company were both very frank about the flu-like side effects associated with Rebif. Even still, no amount of warnings prepared me for what it's actually like. The short version is this: Last night was an injection night... which I spent in tears from joint pain, chills so bad my teeth chattered, and feverish. Neither I nor my husband slept at all thanks to my constant tossing, turning, and cursing in agony. Today was a little better, but still quite sore and had a headache that simply would not cease no matter what I did. I have come to seriously dread my Rebif injections. I honestly feel like just when I start to feel a little better, it's time for the next one, and I am back to hell.
Needless to say, this is further fueling my inner turmoil over whether to be on DMD's at all. I have asked this question before, but I have to ask again: What is the purpose of a drug to treat a disease who's side effects are just as bad (and sometimes worse) than the disease itself? What if I am in my last mobile years of life, and I am wasting them being sick because of my DMD? I understand I have to give the Rebif time, and I understand that the side effects could lessen after a couple months. I've already resigned myself to giving the Rebif six months. But that still leaves me with months of being sick regardless, potentially for nothing if it never gets better and I go off it entirely.
Right now, my gut instincts are very strongly telling me to research homeopathic treatments a lot more in-depth. I have friends with MS that suffered relapse after relapse while on DMD's, went off them entirely and started treating their MS with natural sources, and have since gone years without a relapse. Of course, they overall feel light years better just not having the DMD side effects anymore.
*sighs* I'm not sure what the answer is, I only know so far DMD's and I don't seem to mix well. For some they are a blessing and help so much- I don't dispute that in the least. For others, like myself, they simply don't seem to do what they are meant to and we're left making hard decisions that could potentially effect our entire future. A decision I fear I'm on the threshold of having to make.
So that's where I am. Loving my new home, hating my Rebif injections, and hoping my knee finally heals. More to come soon!
Sunday, September 27, 2009
As I mentioned in a previous entry, I had stopped taking Copaxone in preparation to begin Rebif. I'll be honest, I was dreading it. Then the titration pack arrived in the mail, and I simply cringed. Not so much the thought at having to do shots again, but because of the side effects. For those unfamiliar, a titration pack is an increasing dose to get your body gradually accustomed to the medication. I have to do the injection three nights a week; I chose Monday, Wednesday, and Saturday because I can sleep in the following day if needed. The first six injections were only 8.8ml, and much to my relief, I coasted through pretty easily. Now, last night was my second dose at 22ml. Hmmm...not coasting quite as easily anymore. I had a feeling almost tripling the dose would hit me harder, and I was right. I'm not sure how to explain it, except it feels like the aftermath of having the flu. I find the day after (I go to sleep immediately after the shot) I feel extremely achy, run down, and just overall blah. Needless to say, if this is how I feel after only 22ml, I'm seriously dreading the next to jump to the full strength dose of 44ml. Urgh!
I guess I'll have to wait and see how the next few months go. Maybe I'm being foolish even posting on this right now- I admit I'm not in the best spirits. As most know (see previous post) me and stairs simply do not get along anymore. Yet I am currently living in a second floor apartment. Well, to make a long story short, the stairs have officially won the battle. *sighs* About a week ago, I completely blew out my knee trying to maneuver them, and I've been pretty much housebound trying to heal ever since. I'm getting real sick of limping around the house in a flurry of profanity whenever I try to do even the simplest thing like move from my computer to the couch. So couple that with legs that were already sore and weak, and a shot that leaves me achy the next day, I'm more than a little annoyed at life at the moment. It just sucks. I'm sick of being tired, and I'm tired of being sick.
The one bright spot on the horizon, is we are trying to move into a ranch house. No stairs, yay! I actually just called the homeowner back today, I'm hoping we can see it either tomorrow or Tuesday. I'm praying he's also willing to work with us on deposits- we had anticipated a large back check from Social Security to cover the moving expenses and deposits. Thanks to them apparently forgetting I worked full time many years before getting sick, that check hasn't come. Now, we are struggling to come up with the money on our own. Not an easy feat. But, as my currently swollen and fluid filled knee proves, the time has come moving to a single story dwelling is no longer an option- it's a necessity. I just can't live on the second floor anymore, it's making my life ten times more miserable and painful than need be.
So, that's the latest from my end. Say a little prayer my knee heals up and we find a way to move into this house. I guarantee if these two things happen- my next post will be in MUCH better spirits :)
Until next time- Be well!
Friday, September 11, 2009
This was a lesson I learned this evening. Tonight was my daughter's debut marching band performance, at the first football game of not only the year but her high school career. I was so excited, she's been working so hard and I was just beaming with pride. You must also understand that the marching band kids aren't seen as the 'geeks' they were back when I was in school. In her school, they are quite popular, and the crowd goes wild the minute they hear the drums booming before they even actually march onto the field. They dance, they have amazing choreography as they play, they are so 'alive' and exceptionally good. Just like she'd been waiting for this night a long time, so had I.
My spirits where very high when left for the stadium. Parking was a nightmare to say the least. There wasn't even a handicapped spot open anywhere. No biggie, my husband simply dropped my son and I off at the gates and parked while I bought the tickets. Well, it turned out the walk from the parking lot was nothing compared to having to walk to around the stadium to the other side. By the time we reached the area our team's fans sat, my legs and feet were hurting and very weak. As I looked up at the mass of red covering our side of the bleachers (red is our team's main color), my mind went to instant assessment mode. How was I going to climb these bleachers? Suddenly my high spirits turned to anxiety, because I realized there was no way in God's green earth I'd ever be able to simply hop up the levels as I did the last time I was in a stadium. This... was going to be a problem.
There were zero seats left on the first level. None. We walked slowly along, searching for seats I could access, and found none. Now my anxiety was getting really high; I couldn't stand for the whole game, I couldn't just climb over seats, what in the world was I supposed to do? Finally, at the very end of the stadium, I spotted some end seats open a few rows up, and because it was the end there was also a railing. With an enormous sigh of relief, I trudged my now exhausted and shaky body up the stairs while clinging to the cement railing and we sat down ready for the game.
As we sat for the half hour waiting for the game to start- and the bands big number, which was immediately before the game started- my legs just ached so badly. I tried to hold up my cell phone with my left hand to take pictures only to find it was trembling so much anything I took was just a blur. Then, I felt my right leg start get the cold, numb feeling I experienced during my last relapse; it feels as though my leg is in a bucket of ice water. "I can do this" I thought to myself, almost trying to convince myself I'd be ok. "I CAN'T miss this, so I just have to deal with it awhile".
Finally...in the distance, the sound of drums booming over the already rowdy crowd. Once again my spirits immediately soared, they were coming! I rose to my weak feet with the rest of the crowd, everyone screaming and clapping as the band made their entrance. And I stood there with probably the biggest, goofiest grin on my face as I watched my daughter perform. The crowd danced and sang right along with the music of "The Who" as the band played flawlessly. I watched in amazement as over 200 kids moved fluidly around each other as they played, even making the formation of a pinball machine during "Pinball Wizard". They were just awesome. I'm not sure if it's normal for people to tear up during "Who Are You", but I did. I fought tears of pride and happiness as I watched my little girl transform into a young, talented woman right before my very eyes.
When they finished, I was screaming and clapping right along with everyone else. And as I watched the band exit the field, suddenly I realized I was going to face plant into the guy in front of us if I didn't sit down. My legs no longer ached, they HURT and hurt bad. I mean, I was totally spent. Meanwhile my son was losing his mind, and it became apparent fast that we weren't staying for the whole game. My daughter's part in the night was over, so I was alright with making an early departure. I saw her big moment and watched her play, so now I needed to go home.
Sounds like a simple task, right? Oohhhh no, not by a long shot. There were people lining the cement railing I'd used to make the climb up. Not just a few people, but solid people all the way down the entire stairway. I stopped and leaned into my husband, whispering "we can't leave, I can't make it down stairs without the railing". Two women nearby overheard me, and immediately looked me up and down, obviously trying to figure out what the heck my problem is. (yes, here we go again, you look fine so you must be fine!) We sat back down, and I once again felt close to tears. Not tears of happiness and pride as I had just a short time before, but frustration and even a little embarrassment in the fact I couldn't even go down ten stupid stairs because the railing was blocked. I felt trapped. I felt helpless. I felt...just...awful.
By the grace of God, the row lining the railing decided to move down. I immediately tugged on my husband's arm "the railing is open, let's go!" So we made our way down the stairs, me almost hugging it just to support myself so I wouldn't fall. Finally... now if I can just make it to the gates so my husband can drive the car around, I'll be ok. Fifteen agonizing minutes later, I fell into the car. My legs were so weak by this point I couldn't even lift them in. I had to sit and actually grab my thighs to give them the extra boost into the car. Of course, being as we're still stuck in this dang second floor apartment a few more weeks, I had to make it up them too. I honestly didn't think I would, either. I can't remember the last time I had to push myself so hard.
So... that was my night, and the events that led me to realize all the little things I once took for granted that I now miss so painfully much. The ability to walk. The ability to go up and down stairs. The ability to simply stand for a length of time. All things I would now give anything to be able to do again, even just for one more day, and everyone else around me takes for granted doing so effortlessly. All the little things I never thought I'd miss.
My challenge to you? Take a look at the things in your life that you do, the people around you, and the things you have. Don't take any of them for granted, no matter how insignificant they may seem. Give thanks for the little things while you have them, because sadly, you never know much you'll miss them until they are gone.
Be well all,
Sunday, August 30, 2009
Which, leads me into this post. My neurologist has decided to switch me from Copaxone to Rebiff, because obviously the Copaxone just isn't working for me. Rebif has considerably more side effects than the Copaxone, namely flu like symptoms from the injections. I'm currently waiting for the insurance company to get through all their lovely red tape in order for me to change my meds. In the meantime, I didn't refill my Copaxone prescription for two reasons. First, it's not working so why bother? And second, I really wanted to see how I feel off it.
I have been off all DMD's (disease modifying drugs) for a little over two weeks now. After my steroid infusion, I was good for all of maybe 3 days and my body went right back to hell. It was extremely disheartening. Yet I stop the Copaxone, and I get noticably better. Even my husband has noticed an improvement, not only in my physical state but psychological. I don't think it's a coincidence that I am feeling better after stopping the Copaxone.
I know of many people with RRMS that opt not to take any DMD's. The sad fact is, all DMD's only slow the disease's progession about 30% at best. Of course, that's if they work at all. Likewise, all DMD's have potential side effects, none of them pleasant. Many with MS just find they simply aren't worth it. I mean, if you think about it in terms of statistics, the odds are against them making a significant improvement in your life. In fact, your odds are much greater that due to their side effects your quality of life will decrease when taking them. So, I find myself at a very hard crossroads, a choice that could potentially effect my life long term. Is it worth the potential of slowing the progression of this disease by 30%, if in taking the drugs that do so it seriously decreases the quality of life I have now?
I'm not sure of the answer to that yet. In fact, I'm really struggling with it. I think for now, I will start the Rebiff and see what happens. But if say after six months on it, I find I feel awful constantly again, I will once again go off all DMD's and see if I improve. If I do...well then... much to my doctor's disapproval I may go off all DMD's altogether. I really hope I see an improvement with the Rebiff, but being honest, hoping and expecting are not the same thing. I fear in my not so distance future, I will face the choice of battling this disease without the standard meds used to fight it, or with them at the cost of my daily quality of life.
Oh one final note: I know many others with MS read this. I'd love your input on your experiences with the different DMD's out there, and the input of others who may have decided not to take them at all. Through all my journey with MS, I have found consistantly the best advice I get isn't from doctors, but from others battling this disease just like me :)
Be Well All,
Sunday, August 16, 2009
I find myself debating that this morning. Today is day two post steroid infusion. I slept last night, though a rather fitful restless sleep. I feel pretty decent today overall, though having just choked down my taper dose of oral steroids has me a little jittery per usual. I think I'm watching myself, my body, entirely too closely again. I can't help it though- I keep looking for signs of hope. But what am I hoping for? Am I hoping for this 'normal' we all aspire to? Sadly... yeah I think I am. For as good as I feel today overall, I'm a little sad, because I don't feel what I perceive as 'normal'. Maybe it was wishful thinking, maybe it's because I AM an "MS Noob" being only a little year into my diagnosis. Whatever the case, I was really looking at this latest Solu-Medrol infusion as a silver bullet, even if only a temporary one. Last time, I did feel what I perceive as normal afterward. For me, the word normal means very simply to feel like I don't have MS. And as I sit here now, with my left arm feeling weak and my hand giving me issues typing, my face still tingly and burning, I know this is not the normal I am searching and praying for. I still feel like I have MS.
What I am realizing, and continuing to learn over and over it seems, is that my 'normal' will never be again the measuring stick most healthy people aspire to. In fact, I am realizing my normal doesn't exist. There is no normal, can be no normal, when your body changes so greatly from day to day depending on how angry the monster called MS lurking within it is.
I took a break mid-post and did some running around with my son. I find if I get out before the heat of the day is bad, I do pretty well. As most know, Multiple Sclerosis and heat do not mix. I call it "insta-weakies", because the minute I start to heat up it's like every muscle in my body turns to jell-o instantly. So, Joshua and I ran and picked up some scripts, got him a donut and me some coffee, went to Kroger, then ran by my mom and grandma's house for a visit. My mom and her husband moved in with my grandma a couple months back. I have to tell you (and yes, they do read this so I'm sure they'll laugh), my mom and grandma together are quite the comical pair. They bicker and pick on each other endlessly, then they both look at me to take their side against the other. I just laugh at them. They love each other very much, but man those two are like 'The Odd Couple'. Two grown women, both set in their ways, and both sure they are the one that is always right. And I am no fool- I know as sure as I know my name, if my mom and I lived together, we'd be the same way. One thing they don't quabble over is me- they both worry about me. Probably too much. Which, as a mother, I understand. If my daughter was in my situation, I'd worry endlessly too. So as I sat drinking my coffee with my mom and grandma, the usual "how are you feeling?" came up. I told them as I posted here, I was a little down that I didn't feel 'normal' after this infusion.
Then my grandma and I got talking further. And it hit me: she doesn't know 'normal' anymore either. God Bless her, she's in her 80's, and the feistiest most awesome lady you'll ever want to meet. But she is old, and as we all know with age comes bodily deterioration. As I sat there trading woes with my grandma, I guess I realized what I had already been contemplating. Normal isn't universal, and it varies greatly from person to person. There is NO 'normal'.
While I know this revaluation to be true, changing my mindset to stop myself from searching from the elusive, mythical state of normal will take some work. So for now, I will find what MY own personal normal is, and strive for simply that. As I do so, I will remind myself that just as there are many out there who's normal is a lot better and nicer than mine, there are also many in this world that will look at my own normal with envy because theirs is so much worse.
As the old cliche goes "Why be normal?" :)
Be well all!
Saturday, August 15, 2009
And those are the two reasons I caved in and had another one over the last three days- my children. Yes, I was relapsing again and badly. Yes, I needed it to pull me out. But when my doctor said he wanted to put me on one again, I won't lie. My first thought was "oh, I'll get a couple glorious weeks of being normal with my kids again". And I immediately agreed.
So here I am, well after 3am and wide awake due to the horrible insomnia that comes with the infusions. I can go literally days with little to no sleep for the first week during and after one. That, is the side effect I simply despise. Especially since I know my body needs the sleep badly, and I will eventually crash very hard. There is also the very real risk of becoming diabetic from them, as well as your thyroid shutting down. Not to mention organ damage. For the time you have such an insanely high amount of steroids in your system, your body is no longer in control. The steroids have full control over your functions. My point? The choice to use this therapy to tame a relapse is not one that should be entered into lightly and without a lot self education on the risks. But for me, the benefits far outweigh the risks. So here I am. Again.
I have to say, it's been a really really rough year. After my first infusion, I was totally MS symptom free for a little while. This time is a little disheartening, as I am not. Yes, I am TONS better, but my left arm and hand are still weak and tingly, and I've only regained maybe 70% of the feeling in the left side of my face. I suppose it's to be expected. My cognitive issues remain as well, maybe a slight improvement in processing time and a little better short term memory. As I stated in my last post, I have progressed. It's just difficult to accept the fact I have reached the point some things may never, ever be normal again as long as I live. Even after an infusion- my last and only hope for a rare reminder of what normal even remotely feels like.
But, I choose to be thankful it's worked at all, and has given me this brief window of time to really enjoy getting out and doing things. Soon enough I will slow down again, and find myself unbalanced. I will get fatigued just from the walk from my car to the store, and grocery shopping will be fond memory. After my first relapse, I found after the steroids wore off my baseline had changed for the worse, I expect the same to happen this time as well. A relapse takes it toll on you without doubt, and very few of us with MS come out of them without some lasting effect that we didn't have before we slipped into them. So until I find out what that will be for me...and I go back to being trapped in my failing body... I will enjoy this precious, blissful time I have free from major disability. An all too brief breaking free of the monster that lurks inside of me. For that, insomnia is a small price to pay :)
Be well all, and may God bless you.
Saturday, July 25, 2009
Well, in a matter of days it will have been a full year since I stood up, dizzy, to find my left leg didn't want to work. Which, of course, we now know was the beginning of my first full-blown clinical exacerbation, eventually leading to my MS diagnosis.
I find myself rather reflective lately, and admittedly, a little sad. I was talking to mom about a water aerobic class at our local YMCA this morning that I was interested in taking while the kids are at school, and during the conversation the inevitable "how are you feeling?" question arose. Truth is, I've been feeling pretty crappy lately. Further into the conversation about MS, I said "Mom, whether we all want to say it out loud or not, I've progressed during this year". She agreed "I know you have, I see it".
And really in a nutshell, that is it. I have progressed in this disease in the last year. My left arm and had are considerably weaker (and useless) than they were a year ago. A year ago, the left side of my face didn't constantly feel like it was tingling and sunburned. A year ago, numbers and detailed directions didn't totally confuse my brain. A year ago, Multiple Sclerosis didn't have a firm grip on my life.
Likewise, a year ago I wasn't taking handfuls of pills every morning and night to ease pain and be more functional. Heck, I didn't take any prescriptions at all. Of course, this post wouldn't be complete without mention of my infamous, dreaded daily Copaxone injections. Last night I was doing my shot, and per usual it left a massive red itchy welt on my arm. Morgan cringed and looked away as I about to pierce my skin with the needle. She hates needles, and can't even watch while her own blood is drawn. As I was putting the cap back on the syringe afterward, she commented "I could never do that" in reference to my daily shots. I shrugged, and rather matter-of-factly replied "You could if you didn't have a choice, I never thought I could either and now I do". And really, that says it all. I never thought I could stick a needle in my own flesh. I had hated and feared needles since I was a little girl having my appendix removed. Now? They don't even phase me. They are a part of my daily life, just like brushing my teeth or combing my hair.
This first year of "officially" having MS (I say that in quotes, as we now know I had it mildly for years before finally diagnosed) has been trying to say the least. My life has changed drastically, as has the lives of my family. I have friends who've had MS for years, and they assure me the first year is always the hardest. I can only hope they're right.
There is a plus side I've discovered this last year. I have an appreciation for my life, and those I love in it, that I didn't have before MS entered my life. I also realize more now than ever how much I am loved, as so many of my family have gathered around me to support me and simply "be there" for me. I guess even with something as awful as MS, there's still a silver lining around the black cloud. For these things, and especially my family, I am so eternally grateful.
Until next time, be well all :)
Monday, July 6, 2009
Now, my latest true headache is fighting with my idiot insurance company... again. My doctor prescribed Ritalin at my last visit to help both fatigue and cognitive issues. And once again, my insurance company seems to think it knows me, and what is best for me, more than my neurologist. Yup, they have denied the claim. The want my doctor to prescribe a different medication. I am furious. I do not, for the life of me, understand how an insurance company can 'suggest' anything in regards to my care. They don't know me, they've never seen me, and know very little about me or my condition. Yet they are essentially dictating my care, no doubt based on the almighty dollar.
Which brings up another related point- Obama's universal health care reform. So many under-informed people think this will be a good thing. But, I challenge you to do the research for yourself on this issue, and read a lot deeper than the scripted publicity clips that are meant to bolster support and profess it's greatness. The truth of the matter is, if this goes through, the government will be the one deciding whether you are worth 'saving' or treating. He has openly said, that a big part of the plan is for the government to cut down on "frivolous and unnecessary spending". But just like my battle with the insurance company, who is the government to decide what is necessary and what is not for a person? The sad fact of the matter is, if Obama's plans for health care go into effect, the elderly and chronically/terminally ill will suffer greatly.
Why do you ask? Let me give you an example. Say someone develops a form of cancer with an 80% mortality rate. Under Obama's government run health plan, they would then take a look at the situation, and based on statistics likely decide it wouldn't be 'worth the money' to spend tens of thousands to treat that person's cancer. The reason? Odds are with the high mortality rate, they won't beat it anyway. Even though there IS a chance the person could beat it. Or say an elderly woman with many existing health conditions develops Lupus. They could then opt not to pay for treating the Lupus because it's likely she won't live more than 5 more years anyway and they're already spending thousands monthly treating her other conditions. Or, say someone like me with Multiple Sclerosis moves into an aggressive, progressive form of the disease. The disease ravages the person's body, leaving them curled and bedridden, unable to even sit up or speak. Then, a costly cure comes out. They could then opt not to spend the hundred of thousands on the cure for that MS patient because the disease has already progressed so far and they'd likely still be disabled anyway. Even though the cure would keep MS from taking their life entirely.
The bottom line is, Obama's government run universal health plan is based on statistics, not the well-being of the American people. Your health care, everyone's health care, will be determined based on percentages and dollar values. And if you think fighting private insurance companies now is hard? Just wait til Uncle Sam is the one holding all the cards. At least now, we do have some recourse to fight for our right for treatment. If the government is the final authority in our health decisions, the days of fighting insurance companies will become blissful memories, because at least then we had a chance to fight.
So I leave you with this thought... what dollar value would you put on your life, and the lives of those that you love? Are you ready to see what government's assessed value of your health is?
Be Well All,
Saturday, June 27, 2009
To make matters worse, I also fear I'm flaring the last couple days. The left side of my face is numb/tingly/burning quite often, and the fatigue is simply horrible. The doctor actually prescribed me Ritalin, of all things. She said it should help with the fatigue as well as the focus issues. Which, is another thing that's been getting worse the last couple of days. My eyes have also been acting up lately, and anyone who knows me getting double vision again is a huge fear of mine. I just overall feel like crap, and it scares me because I am so afraid of another full blown relapse.
It's very hard, and look back to a year ago, and see how much I've deteriorated. I'm having a horrific time dealing with heat this summer too. It's not even really hot yet, and I feel like I'm going to fall out from just 5 minutes outside. I just hate it, because I used to love the beach and being outside during the summer with the kids. Now, I feel like Multiple Sclerosis has stolen that from me along with all my malfunctioning body parts. Yes, I've hit a pity party spot in my journey. I haven't had one in awhile, and considering how awful I feel lately, I think I'm entitled. I know as always, I will overcome this flare and I will snap back out of the funk I'm currently in. But knowing that doesn't make it any easier being in it.
I'll update again soon.
Tuesday, June 23, 2009
It was an incredible experience, and in so many ways, gave my heart the boost it needed. Those of you reading this that know me, likely also know Heather. She is not only my cousin but my best friend pretty much since birth. All the milestones in our lives, good and bad, we've crossed side by side. So when she called me Saturday morning to tell me she was in labor- I instantly sped off to the hospital.
I won't lie, getting there wasn't easy. My mom was borrowing my GPS, and as most know due to the cognitive issues of MS, me and directions just don't mix well. I just don't comprehend things like a normal person anymore. I can read something 10 times, understand the meaning of every single word, yet it just doesn't sink in. So... of course... the trip which should've taken an hour took closer to two hours. By the time I finally reached the hospital, I was pretty dang tired and frustrated. Thankfully, she still had a couple hours to go until active labor, so I had time to sit and rest up.
By the time came for active labor, thankfully I was recovered from the drive and ready. Not to sound totally cliche, but it was a beautiful experience. I think the moment that struck me most was towards the end. I could see how much pain Heather was in, and how tired she was, just as her baby was finally crowing. I took her hand, which I was already holding, and gently placed down so Heather could feel to top of her baby girl's head, and whispered "that's Maria, she's almost here hun, you're doing so awesome just one more big push and she'll be here". I saw the soft smile on my cousin's face feeling her baby's head, and I saw her strength return. Within minutes after that, Maria Bernadette entered the world. Needless to say, I bawled in joy. It was such an amazing experience to be able to witness Maria finally entering this world. It truly did my heart good.
Now, from the MS perspective, I felt like I'd been hit by a freight train by the time I was driving back home afterward. I was totally exhausted, my brain was big fart of forgetfulness, my always weak and tingly left hand was pretty much numb, and all I wanted to do is go home and crawl into bed. I ended up sleeping a good 14 hours that night, as well as continued to nap and recoup the following day. It's almost funny, I mean poor Heather was the one in labor for 12 hours, yet I was the one that a total and complete mess afterward.
But you know what? It was so worth it. Watching little Maria enter our world reminded me of how beautiful life truly is. It was the exact "lift" my heart needed. It also reminded me that I can push through my own physical and cognitive limitation when I really need to. It's like I always say, I may have MS, but it sure as hell doesn't have me.
Be well all!
Monday, June 8, 2009
I have noticed something, very often people end their emails by saying they're keeping me in their prayers, but they follow it by something like "hope that doesn't offend you" or "it's meant in a good way not religious". It's as though because of the times we live in, people feel the need to excuse or explain their spiritual beliefs. So, though I fully recognize this could be a hot button topic, I feel the need to hit it anyway. Faith and dealing with MS.
Yes, for the record, I am a Christian. I do not consider myself any specific denomination, but simply believe in Jesus Christ and that He is the way to salvation. Now, before my emails blow up with people debating me on Christianity- you may as well save your breath. Nothing you can say or do is going to sway me from what I know to be the Truth. I'm not making this post to stir up atheists or convert anyone to Christianity. What I do want to touch on is how faith can help you deal with not only MS, but any chronic illness.
The sad reality is, life is rough. Even under the best of circumstances, we all have our issues to deal with and burdens to carry. For me, knowing this life is only a stepping stone rather than an ending helps to deal with it. I know it wasn't God's desire for me to develop Multiple Sclerosis. Just like all loving fathers, He wants His children happy and healthy. But also like mortal dads, He also will allow His children to struggle if by doing so it will serve a higher purpose in their lives. I like to compare it to having a child who doesn't know the value of the dollar. Say your daughter wants a $100 pair of shoes. Sure, she's a great kid, and yes you can afford it. But you also know by making her earn that $100 she will not only appreciate those shoes, but learn the value of money, hence making her a better person.
Now, that doesn't mean that daughter isn't going to be a bit ticked off that you won't simply buy them for her. She may even resent you for having to give up some of her free time to work. You may even find yourself in a sticky situation along the way. Say at this after school job, she has a boss that's a real jerk. Day after day, she comes home complaining how rude and arrogant this boss is, and how she swears he thrives on making her miserable. As a parent, your gut instinct is to run down there and ring the dude's neck. That's your little girl he's upsetting! But as a loving parent, you also realize the job is the boss's domain, and she will have to deal with unlikeable people her entire life. It's a good that she starts to learn how to deal with them now while you're there to guide her through it.
Like the daughter in this example... I too get resentful. I get angry as heck that God has allows me to have to suffer through this stupid disease. I am willing to admit God and I have had more than one little 'talk' that has consisted mostly of me screaming and swearing about how unfair this is and how I seriously pissed I am at Him for allowing it. As I mentioned before in this blog, I sank into a rather deep depression after my diagnosis, and didn't snap out of it until a relapse showed me how "good" I really was while at my baseline. In that way, whatever the circumstances in our life, we all play the role of the child that is forced to live our lives as our parent allows, whether we understand the reasoning behind it or not.
That...is where faith comes in. We have to have faith if we are going to survive this world. I have faith that God is looking out for me whether I see or not. Just like the daughter being in the jerky boss's domain, I am stuck here with everyone else in Satan's domain. Thus... I have to deal with the fact my crappy job is to live with MS. Why is God allowing me to live with this? I don't know. I wish like crazy I did. But again, that is where faith comes in. I have faith that God's plan for my life is greater than anything I could plan for myself, and I have faith He will see me through the obstacles and trials along the way.
You see, it's faith that can keep you going. If I woke every day thinking when I die, I'm just gone forever into worm food and nothing else, I'd have probably given up years ago. What would be the purpose of being here? Especially with MS? But I know there is more, and I know God is seeing me through it every step of the way until I finally come home to Him.
In the meantime, I am blessed to say I DO see little glimpses of the reason God allows me to live with MS. I have an appreciation for my life, as well as those in it, that I didn't have before. I also have met some amazing people I may not have if didn't have MS. For instance, I have a dear friend who's mother also has MS. It was that common bond that really started our dialog, thus allowing us to grow from passing strangers into something real. Ironically, he also shares my spiritual beliefs, so not only did God put someone in my life who can understand my struggles, but someone I can talk to on a spiritual level as well. Then of course, there is my activism to educate others on what Multiple Sclerosis really is and what it's like to live with. I know I've heard from more than a few they've learned something, either from this blog or speaking to me about MS, that they've taken into their daily lives. So you see, while I still pray for a cure for this wicked disease, I am also able to see the little hidden blessings that wouldn't exist if I didn't have it.
It's my faith that sustains me, and it's my faith that helps me wake up every morning and see more good around me than bad. It's my faith that allows me to rest easy knowing despite this horrible disease I live with, there are incredible reasons behind me having it... even if I have to have faith that they are there despite my inability to see them during this lifetime. It's my faith that allows me the comfort in the knowledge I'm not suffering for nothing.
So for all you emailing me with closings lines including "I'll keep you in my prayers"- thanks! Just don't ever feel the need to explain or excuse your faith. Not to me, not to anyone. :)
May God Bless You All,
Thursday, June 4, 2009
I'm sure anyone reading this is by now thinking "ok, this is very sad, but what on earth does it have to do with living with MS?". Actually, a lot. As I sit here trying not to itch the spot I gave my daily Copaxone injection a few minutes ago, I can't help but reflect on my own life in relation to the tragic ending to Matt's. Every day is fight for me. Be it a fight to make my hand work, a fight to walk without falling over, or a fight to speak without sounding like an idiot as I forget words. I fight with this disease daily, always trying to overcome it and always trying to find ways around it. Some days I fight just to not crawl back into bed and cry my life away at the unfairness of it all. I think that is what struck me, we all have fights in life. Some people look at me with pity and wonder how I do it. I look at people with much worse afflictions and wonder how they do it. We all can look around, and always find someone worse off than ourselves. Or can we?
Obviously, for people like Matt and the thousands like him that choose to take their own lives, they can't. They can't see past their own pain and despair to realize it really can always be worse. They completely lose their will to fight another day. In their eyes, there is no worse. So they make it stop the only way they know how.
I am grateful to still have my will to fight. To my cousin Matt... I am so sorry that you lost yours along the way, and that you felt you had no other choice but to leave this life forever. If we can all take one lesson away from this horrible ordeal, is that we are all human and vulnerable. Just because you still have your ability to look around and see that things could be worse- or can get better- please don't forget there are people out there among us that can not. Those are the people that need us to fight for them when their will to do so for themselves is gone. Be good to one another, you never know who's life you may save in doing so.
... and never stop fighting.
Be Well All,
Wednesday, May 27, 2009
So, what does that mean? It means that the various MS organizations world wide are finally starting to work together for a greater cause. It means today is the day to take a moment of your day, and educate another about what MS is. It means today is the day those of us with MS band together in hope that maybe, just maybe, this will be the last annual World MS Day because a cure will be found.
What am I doing for it personally? Well, I have an orange "Find a Cure" ribbon magnet on the back of my car, which is always there. I also pretty much always wear one of my two MS bracelets. Heh, and of course, I'm updating this blog. A lot of you know I have been a resident of the virtual world "Second Life" for a few years now. In Second Life, I am a member of a couple MS support and activism group. I always have a post on my profile talking about MS. But today, in honor of World MS Day, my cute little character is walking around with a tag announcing what day it is, and she's wearing orange. This may sound funny to some, but honestly? Second Life is where I find the most opportunities to educate on MS. I meet dozens, if not hundreds, of people from around the world. Many many more than I would ever meet in my real life. I am quite open about having MS, which actually does quite a lot to call attention to it. Why? Because my current avatar is a hot little blond neko, who looks anything but "sick". It's a perfect example of decieving looks can be, and how just because someone looks healthy doesn't mean that they are.
So... that is my challenge to everyone reading this. Take just a few minutes of your day, and educate someone about MS. Together, through education and research, I know one day we will find a cure.
Be Well All!
Sunday, May 3, 2009
I've heard a lot of descriptions of MS fatigue and what it's like to live with MS, but here is one I thought of:
Imagine you are planning a big camping trip. But the night before you are supposed to leave, you stay up a bit too late talking to a friend so you only get a couple hours sleep. The place you have chosen for this trip is in another state, so you get up at 5AM and make the 8 hour drive to your destination. You finally arrive, and in your haste to get going you realize you skipped lunch. No worries, you think. You'll grab a bite to eat once you get your site set up.
You step out of the car, and you are stiff and sore from the long drive. You go to your trunk and pull out all your gear. Your backpack can't hold it all, so you also have a bag to carry in your hand. So much for using a walking stick like you normally do to navigate the rocky terrain because your hands are too full. Just as you start off towards to the hiking trail with your 30 lbs of gear, you feel a drop of rain on your cheek.
Despite the light rain, you finally begin your hike. The ground is wet, so maneuvering the damp ground and slippery rocks while carrying your huge load proves to be quite trying. You slip and fumble a few times, grabbing a nearby tree to regain your balance, but you press on. You finally near the spot you planned to meet your friends, it's now dinner time, you are wet, tired, hungry, and sore. Only when you arrive there, you find it to be empty. A quick call on your cell phone reveals the location was changed to the west side of the park. You are on the furthest most eastern side of the park. You are miles from where you should be.
Feeling frustrated and defeated, you trudge off towards the east. The rain has continued all day long, so you slip in mud more than a few times, once even slightly twisting your ankle. The bags you are carrying now feel more like they weight 80lbs from lugging them around all day. You are weak and lightheaded because you've now skipped not one but two meals. You are tired not only from the drive and hike, but from getting so little sleep the night before. It's getting cold, and your muscles ache and beg for relief.
Just when you think it couldn't get any worse, as you're walking you suddenly feel a creepy-crawly sensation followed by burning working it's way up your legs. Much to your horror, you realize you've stepped in a large ant mound, and they are now covering your legs. Your bags fall to the ground as you desperately try to get them off, even kicking off your socks and shoes to make sure none are hiding in there. Sure they are finally off you, you put your socks and shoes back on and pick up your heavy bags once more. Once you begin walking, you realize there's a few small pieces of debris from the forest floor in your socks. The further you walk, the debris turns from an annoyance to painful. Your legs still sting from the ant bites, and you're sure you still feel a stray ant crawling on you from time to time and try to brush it off only to find nothing there.
It's now nightfall, and you finally see the glow of a campfire in the distance. You've found your friends! The problem? It's on the top a very large hill. You struggle and stumble your way up the hill, your muscles hurt and your body is just about at the point of giving up. You really wish you had eaten something because you're so weak you're feeling light headed. Why in the world did you feel the need to bring so much stuff, anyway? You finally make it up the hill, and you literally collapse.
But... you still have to put up your tent. You struggle back onto your feet, and spend the next half hour putting up your tent. Your friends are all excited and ready for a long night of partying by the campfire- but all you can think of is food and sleep. You grab a few hot dogs and eat them raw, you're just to tired to bother cooking them. And while everyone else is having a great time, you crawl into your tent and fall asleep of sheer exhaustion.
That... is a day with MS. The muscle aches, the feeling unbalanced when you walk, the feeling of carrying a heavy load everywhere you go. Being light headed and foggy brained, sore feet feeling like you're walking on pebbles, even burning and creepy-crawly sensations on your skin. The feeling of frustration and defeat, and being left out of fun events in your life because you're just too exhausted and weak. And what's worse? That's just the tip of the ice burg. There's so many more things that go wrong with your body when you live MS that I didn't even cover here.
So the next time you hear someone with MS complaining about fatigue... please don't compare it 'just being tired'. It doesn't even compare.
Until next time, be well!
Thursday, April 30, 2009
Myth: MS is a strictly neurological disease.
Fact: MS is actually an autoimmune disease with neurological effects. Essentially, in MS the person's immune system mistakens certain proteins in the myelin sheath (fatty layer covering the brain) as an invader to destroy. When the immune system attacks the myelin, it causes lesions. Because myelin is the brain's insulator, when it's worn away the brain's signals misfire causing a wide range of neurological effects. The word 'sclerosis' literally means scars. So, Multiple Sclerosis means 'many scars', which refers to the scars left on the brain from the attacks on the mylelin. Picture a lamp with a plastic coated power cord. Use your nail and wear away a part of the plastic coating, and you will expose the copper wiring. Because of the exposed wiring, your lamp malfunctions. Sometimes you turn it on and it works fine, other times you have to wiggle it around to make it turn on at all. Sometimes it'll start shorting and blink while in use. Eventually, the copper wiring because to rust from exposure, and the lamp stops working entirely. That... is MS. The copper wire is the brain, the plastic cord is the myelin sheath, and the effects on the way the lamp works (or doesn't) is the faulty signals the brain sends because of eroded myelin.
Myth: MS is a painless disease, because the brain can't feel pain.
Fact: 70% of all MS patients deal with some degree of pain in their daily lives. This can include nerve pain, pain from muscle spasms, girdle band pain (squeezing pain around the torso), and a vast array of painful skin sensations. The pain can be very mild to quite severe, occur anywhere in the body, and can vary greatly from day to day. The reason? It isn't due to bodily injury, it's because the brain is sending faulty signals due to the lesions. For example, an MS patient may feel extreme pain in the feet making it impossible to walk, yet there is nothing wrong with their feet. Unfortunately, contrary to old school myths, MS can actually be a VERY painful disease.
Myth: When a MS isn't having an attack, the disease is in 'remission' and not progressing.
Fact: MS can continue to progress even when not in an attack. This is a relatively new finding, until recently it was thought when a person wasn't in a full-blown attack, the disease laid dormant or went into remission. We now know this is not true, and that MS can be progressing even when there are no outward symptoms to show the progression. This is a key reason why taking drugs to slow the disease's progression is so important to most doctors and patients.
Myth: Only white women between the ages of 20-40 years old develop MS.
Fact: Anyone, regardless age, sex, or race, can develop MS. While white women between 20-40 years old are more likely to develop MS, the disease can and does effect anyone. The youngest person on record with diagnosis is 2 years old, and people are sometimes diagnosed well into their 80's. For reasons still not known, men actually tend to progress faster in the disease than women do.
Myth: All people who have MS will end up in a wheelchair.
Fact: Only 25% of all people with MS have to use a wheelchair or remain in bed due to inability to walk/move. Granted the longer someone lives with MS, the more likely the disease is to progress to the point that a mobility aid is needed. However, many MS patients who use scooters and wheelchairs can walk, but use aid due to weakness or for the sake of safety when gait and balance are severe issues.
Myth: MS can be cured through special diets.
Fact: There is NO cure for MS. Sorry folks, if a diet could cure MS, then you'd never see people living for decades with this horrific disease. While disease modifying drugs can slow the disease's progression, and some supplements such as Vitamin D have been show to help, as of the time I am writing this blog MS can not be cured.
So there you have it...some of the most common myths about Multiple Sclerosis debunked.
Be well all!
Friday, April 24, 2009
Four out of 10 (40%) members of the public could not name a single symptom of MS, which include loss of sight and mobility, fatigue, numbness, bowel and bladder problems, muscle stiffness and spasms.
The poll of more than 2,000 people also found 6% attributed MS to "public health issues" such as obesity, poor diet, smoking or germs.
Meanwhile, four out of 10 (40%) thought all people with MS ended up in a wheelchair whereas just 20% do.I wish I could say these results shocked me- but they don't. I can not begin to tell you how many people I've come across since my diagnosis with this disease that are truly clueless about it. The fact this survey showed how ignorant the general population is doesn't shock me- the fact that it IS ignorant is what I find shocking. By most estimates, over 2.5 million people world-wide suffer from Multiple Sclerosis. Roughly 400,000 of them live in the United States. Mind you, those are only the diagnosed and documented cases. If you took all the people with this disease fighting for a diagnosis and those completely undiagnosed, some experts guess that would increase the number of people in U.S. with it to at least 500,000. So how is that a disease that effects millions world-wide, and a half million right here in the U.S., can be so grossly misunderstood?
My theory on this two-fold: The symptoms of MS are largely unseen until you progress in the disease, and no one "famous enough" has been diagnosed with it.
To back up the first part of this theory, take me for instance. Right this moment, I do not walk with a limp or have an odd gait. My limbs aren't flailing spastically and I'm not in a wheelchair. If you saw me on the street, I look just like any other mother playing taxi driver to her kids. Yet right this moment, my left hand is tingling and if you really look closely you'll catch my left thumb twitching when I try to grasp things. The left side of my face feels like it has a horrible sunburn, yet I haven't had a sunburn in years. I have a tight, squeezing pain going around my left side. I even feel unbalanced when I walk though I have learned to compensate and hide it well. My brain fog is minimal, though my short term memory is shot. I also have weird itchy and tingly sensations that come and go over my skin randomly. This, mind you, is a good MS day for me. My bad days are much worse and my horrible days are almost unbearable. But my point is- I look perfectly normal. So if I tell someone "I have Multiple Sclerosis", they look at me, and shrug it off figuring it's no big deal because I look just fine. They have no clue what my body is going through despite it's 'normal' appearance.
Now onto the second part of my theory: No one famous enough has gotten this disease. I know that probably sounds insane, if not even a little shallow, but it's true. AIDS became well known back in the 80's because it hit so many in Hollywood, in the 90's it became almost legendary as people like Freddy Mercury died from it and Magic Johnson told the world he was HIV positive. Breast Cancer became a hot topic when more than a few actresses came out about their own battles with it, most recently Christina Applegate. Parkinson's has even come out of the closet so to speak thanks to Michael J. Fox. Now, please don't think I am faulting the activists for supporting these diseases in the least. I am simply pointing out the fact it's not until a disease becomes "trendy" to support thanks to a big name backing it that people start to learn about it. MS has Montel Williams, who has done amazing things to bring awareness to this disease. We also have Terry Garr and Richard Pryor. But really, overall, we don't have anyone that would be considered a superstar. I wouldn't wish this disease on anyone, yet I know as well as I know my own name that should a hot A list celebrity announce in People Magazine tomorrow that they have MS and that person then turns activist- suddenly you'd be seeing orange plastic wrist bands worn as often as pink and yellow.
So, this is my challenge to anyone reading this: Educate yourself, and educate at least other person in your life to what Multiple Sclerosis is. You can scroll through a number of my previous posts to find some information even. Heck, even pass out the link to my blog if you like. But until us average every day folk get the word out and start educating those around us, the majority of the population at large will remain ignorant. They say "ignorance is bliss", and it maybe blissful for the ignorant but trust me, that ignorance isn't so blissful for people like me trying to live our lives with this horrible disease.
Be well all :)
Tuesday, April 7, 2009
How can THIS possibly be a 'normal' side effect? And yes, this is from ONE injection, this isn't a cluster of sites.
I'm not trying to be mellow dramatic here, but let me tell ya, this sucker hurts. And I wish I could say this is an isolated incident but it's not. Granted yes, it is the worse one yet, but ALL my injection sites now bruise up and itch horribly. What I don't understand is how I can go from very little to no side effects for three months- to this. I did call Shared Solutions. Granted, obviously they can't see stuff like this over the phone, but they are the ones that told me bruising is normal. They also reminded me what I was told before even starting my injections- side effects can come and go at anytime, and just because you didn't have any at the beginning doesn't mean you can't develop them later in treatment.
So yeah... I'm at a loss. Other than the site reactions and joint pain (yes, that's apparently from the Copaxone too) I do seem to do alright with it. But summer is just around the corner- would anyone really want their arms and legs seen looking like this??? I mean seriously, someone is going to think either Wayne is beating me or I'm a junkie. One more thing to be self conscious about. Yay me.
*sighs*... so yeah, I'm cranky. Being itchy is on my last nerve. I'm not sure what the long term solution is for this, but I do know I'm going to have to talk to my neurologist because this sucks.
Be well all. -Mis
Saturday, April 4, 2009
I wrote in my last entry about all the bruised, sore lumps the Copaxone injections are leaving. I wish I could say it's improved, but that would be lie. In fact, I swear it's getting worse. It's bad enough that last night my son went to lay on my lap, and in the process bumped the hip I'd injected two nights before, and I winced because it's still so tender to even touch. As I type this, I'm trying not to itch the golf ball sized lump still on my arm from last night's injection and, dreading tonight's injection on my thigh because it's already got two bruised lumps on it and I'm really not keen on adding a third.
I've also been having almost constant joint pain the last couple weeks, in fact when I think about it, it started around the time the bruised lumps started. I was a little nervous something else was going on with me aside from the MS, but then I talked to my neurologist as well as did some more research on Copaxone. I think you already see where I'm going with this, right? Yup... apparently joint pain is another possible side effect of Copaxone. In fact, here is the FULL list of possible Copaxone side effects:
- Pain -- in up to 73 percent of people
- Redness -- up to 66 percent
- Infection -- up to 50 percent
- Inflammation -- up to 49 percent
- Itching -- up to 40 percent
- A lump -- up to 27 percent
- A hard or firm area -- up to 13 percent
- A welt -- up to 11 percent
- Bleeding -- up to 5 percent.
* General pain, neck pain, or back pain
* Flushing or hot flashes
* Joint pain
* Nausea, vomiting, diarrhea, or loss of appetite
* Muscle tightness
* Flu-like symptoms (such as fever or chills)
* Runny or stuffy nose
* Swollen lymph nodes
* An urgent need to urinate
* Vaginal yeast infection
* Swelling or water weight gain
* Shakiness (tremor)
* Ear pain
* A spinning sensation (vertigo)
* Painful menstrual cramps
* Migraine headaches
I've put the side-effects that I personally have in bold print. The ones that are also side-effects of Multiple Sclerosis itself I've put in blue. So here's my question: How am I supposed to know if it's the MS acting up, or the Copaxone side effects? This problem isn't strictly a DMD issue, either. (DMD = Disease Modifying Drug). The truth is, this is an issue with MANY of the common drugs used to treat the symptoms caused by MS too. Here is an example:
Two that I am also on, Baclofen and Neurontin, both say they can cause dizziness and fatigue. Granted I am lucky, I haven't noticed either symptom getting any worse since starting them than they were before taking them. But last week, my doctor put me on a drug called Topamax. I have to tell you, just reading the possible side effects was enough to give me serious hesitation before taking it. You see, I've been having constant headaches and eating Excedrine like candy as a result. My neurologist said that was not good at all- and prescribed the Topamax. But my issue was the possible side effects- which include numbness, tingling, slowed thinking, troubling concentrating, memory problems, fatigue, muscle pain and weakness. YIKES!!!! These are all issues I already have thanks to the MS, so needless to say I was really hesitant to take something that could make them even worse.
Well after much debate with Wayne on this, we decided I'd give it a try, and if I had weird side effects I'd stop immediately. Took the first dose, all seemed fine. Took the second dose... BAM! Holy crap, that was awful. I swear it was like insta-relapse in a pill. Of course I didn't actually relapse but the side effects were so severe I felt like I had. I couldn't feel the left side of my body, I couldn't think at all, could barely speak because my brain was so fogged over, was so dizzy that walking was totally out of the question, and the parts of my body I could actually feel were tingling and aching horribly. So at that point, I took a 6 hour nap in the middle of the day to try to sleep it off. Woke up, still didn't feel quite right, and went back to bed sleeping for another 10 hours until the next morning. Needless to say, I didn't take another dose of Topamax, nor would I.
Ok but now consider this logic: What if not only are we taking drugs that have side-effects rivaling those of the disease itself, what if we're then being prescribed more drugs to essentially treat the other drugs' side effects? I mean when you stop and think about it, if you are taking drugs with side effects that just so happen to be the same as the disease you have, what are you REALLY treating? Let me give you an example of I thought of:
Jane Doe has MS. She is prescribed Copaxone, which she injects once daily. Soon thereafter, she begins have issue with muscle tightness and pain, as well as migraines. Her doctor assumes these symptoms are being caused by the MS, and prescribes Baclofen for the muscle pain and Topamax for the migraine. Upon taking these drugs, she also develops painful tingling sensations which her doctor assumes is nerve pain from the MS and prescribes Neurontin. At this point, her fatigure becomes unbearable, and they then start to discuss the possibilities of a drug for that as well if it continues.
But what if that original muscle tightness and migraines weren't from the MS, they were from the Copaxone? At that point, Jane Doe is now being prescribed meds to treat Copaxone side effects. And what if the painful tingling isn't actually from MS, it's from from the Topamax? She's now being prescribed Neurontin to treat the side effect of a drug she's taking to treat the side effect of another drug! (wow if you followed that, gold star for you! LOL!) And of course if the fatigue isn't from her MS but rather the combination of drugs... you guessed... more drugs to treat drug side effects.
Are you seeing where I'm going with this? I understand that DMD's in particular are so crucial for RRMS patients, but I still have to ask myself about the quality of life we're leading if the side effects of our medications rival those of the Multiple Sclerosis itself. I don't have the answer to this, I only know if the day ever comes that I feel the DMD's are hurting me more than helping, I will have some very tough decisions to make.
Be well all! -Mis
Tuesday, March 31, 2009
On a very sad note, today I am going to the memorial for Wayne's grandpa. He passed away this past Friday, March 27th. His grandpa was such a cool guy. I remember the very first family function I went to- before we were even married- it's his grandpa I spent most of my time sitting and talking to. He was 101st Airborne in WWII, and ironically was even from the same small town in northern Michigan that my family is from. His grandpa was wealth of interesting historic information and so incredibly interesting to just sit and listen to. Not to mention a very blunt, to the point, no beating around the bush type of guy. Which, of course, I loved about him. Eerily, he died 15 years and 1 day from the date his beloved wife in 1994. She died March 26, he died March 27. I personally find that a little more than ironic. I obviously never knew Wayne's grandma, but from the stories I hear her and his grandpa were so very much in love. For that reason, it makes his death just a little easier because I know he's finally reunited with his wife he's missed for long.
As for myself- I'm hanging in there. Now that I'm fully done with the steroids, fatigue is really kicking my ass once again. I can sleep 10-12 hours a night and still need a nap by mid afternoon. The worst part is, the more tired I get, the worse my brain fog gets. It's more than a little frustrating to say the least. I've also noticed a marked increase in pain, which has me a little worried. I currently have water on my left knee, which obviously isn't helping either, not to mention it's making navigating our steps somewhere next to impossible. I think the day is coming fast that living on the second floor is simply not going to be an option anymore, I only hope we can find the financial means to actually move and cover higher rent sometime soon.
I'm also having issues with my Copaxone injections. I've been on it for 3 months now, and up until recently I never had a problem. Now, I am getting bruises and lumps at the injection sites that last literally for weeks. The worst part of that is, the lumps itch and hurt to touch too. So for instance, right now I have two bruised lumped on each thigh, one from last week's injection and one from this week's injection. I also have bruised lumps on each arm from last week. Normally I skip my arms, but I was trying to lengthen the time before I did my legs again to give them more time to heal. Heh, little good that did, now I just have 6 bruised itchy sore lumps instead of 4. Why I'm suddenly having this issue after 3 months is beyond me, but it's definitely something I need to take up with my neurologist.
But, overall I am holding my own. I really think if I could just find a way to tame this damn fatigue I'd do so much better. I've been really resisting letting my doctor put me on yet another prescription, but I may have to resign myself that one for the fatigue may well be necessary. We'll see.
Be well all! :)
Wednesday, March 18, 2009
In so many ways, I feel like I'm in my 'spring' of this journey I'm on living with MS. This winter was really, really bad. And I'm not talking the frigid temps and snow, either. I'm talking about myself. After years of mystery illnesses, people even thinking I was a bit nuts, and finally being diagnosed with MS in October... I sunk. I didn't just sink a little and bob around, I mean I went down like the Titanic. I have spent the better part of the last 6 months in quite the depression, not to mention in a state of constant fear. Fear of the unknown, fear of my own body revolting against me, fear of losing all that I love and hold dear because of this nasty disease. Every morning, I'd wake up and do a sort of 'body inventory'. Can I see? Ok wiggle your toes... can I stand? How's the arm, think ya have any small motor skills today? Hmm... I think that's some nerve pain I'm already feeling in that damn right leg. Quick do math- what's 8+5? Is your brain foggy? Think ya can speak without sounding like an idiot?
This...was me. And of course, some part of my body inventory would always fail the test, and I'd curl right back up and think to myself "maybe tomorrow I'll feel normal". Guess what? This IS normal. The normal I once I knew so long ago simply doesn't exist anymore. It's gone. Buh-bye. I finally realized I am never, ever going to wake up and feel 'normal' by healthy standards again. This sunk me into an even deeper fear and depression. I thought my life was over.
Funny thing about life, sometimes we have to learn lessons the hard way. As most of you know, back in late February, I relapsed. Not to sound like a drama queen, but this wasn't a little flare I mean I really relapsed full-throttle. You're probably thinking right now "oh that's so awful". But you know what? It's not. That relapse really taught me something- it showed me just bad things could be, and made me realize how 'good' I was actually doing pre-relapse. It was truly an eye-opening experience. And just as my relapse finally ended- is when the long winter ended as well. So really in many ways, mother nature and I both came into our springs together this year.
I have to say, I am enjoying this spring like I haven't enjoyed a spring in years. I no longer do my body inventory every morning. I wake up each day and simply begin, and any symptoms I have that day will reveal themselves soon enough without me fretting over every single possible one. I see things, my life, so differently. It's not over- in fact there is so much left of it. I have the two most amazing children ever born. Some day they'll give the most amazing grandchildren. My life is far from over and I simply refuse to let another day pass me by while I withdraw into my own fears and depression. Yeah, I have MS, and it sucks big time. But oh well, whatcha gonna do? Let it beat me? I mean seriously, this ME we're talking about. My father once joked that since I was just a little girl, the quickest way to get me to do the exact opposite of what you want is tell me 'no' or that I 'can't' do something. Well guess what? MS isn't gonna tell me I can't either. I can...and I will.
So for the first time in probably years, I feel like 'me' again. I am getting out taking Josh to the park, going shopping with Morgan, laughing and playing with the kids. I mean, so what if I take longer at the cash register because my left hand doesn't want to work the zipper of my purse? People don't like the delay? Not my problem- they can wait til my brain and hand work things out. So what if I move a little slower when walking through the store? My daughter doesn't care at all- she's just glad to be shopping with me no matter what speed I move at. Or if I actually get a simple math problem wrong playing a game with Josh? He just thinks is great to beat mom! *laughs* He doesn't care it's because mom's brain is all foggy- he just wants to play with me. I guess what I'm trying to say is, those that love me, just want me. They don't care about anything else, or the condition I'm in, so long as they have me in theirs lives where I belong. Where I want to be.
And that is why I say this is the 'spring of my journey with MS'... because God did something really cool when he made our world. He made seasons. Winter can be so cold, and the world around us looks downright dead when we're in the depths of winter, but without fail just when we think the dreary frigid season will never end, spring arrives. And with spring, we are reminded just how full of life the world around is as things seem to be reborn right before our very eyes. Just like me, realizing how much life I still have left to live. I'm leaving all those fears and feelings of hopelessness in the winter and moving into the spring with fresh hopes for my life. The spring of my journey has come.
Be well all :)
Wednesday, March 4, 2009
It's a catch-22, really. I mean, yes the steroids stopped the relapse dead in it's tracks. In that regard, what a life saver. I was miserable. Not to mention I need all the help saving what brain and nerve function I can get. But I have to be honest, never in my entire life have I DREADED taking a med like I dread taking these steroids every morning. I just... hate the way they make me feel, and I know they are so hard on my system too. This morning I sat there with the bottle in my hand just staring at it, putting it off taking it, for a good 20 minutes.
After a loud sigh and once again washing them down, I got up to return them to what used to be my jewelry box that has now become my own personal pharmacy stand. And I stood there staring yet again, and I thought "My God, my entire system is regulated by drugs". Right now, more than ever.
Here is what my day consists of at the moment: I wake up, and I take a Zantac (150mg, no less) to keep all the pills from eating away at my tummy. Half hour later, I take a Neurontin for nerve pain, a Baclofen for muscle spasticity, Chantix to quit smoking, and of course the steroids. By then my Copaxone is about room temp, so I then give myself my daily shot to keep the MS under something remotely resembling control. Let my tummy calm...and around lunch time I take B12, Vitamin D, Omega 3, and Inosine. That's the supplimental round of pills. Then I get a break, don't have to take anything else til around dinner time, and then it's time for another Neurontin. Joshua goes to bed a couple hours later- and I walk back into the bedroom. Another Baclofen, another Chantix, another Zantac, and now I add in Paxil for anxiety/depression as well. Finally bed time comes, and it's time for the final Neurontin of the day, only now I also have to take a sleeping pill too because the damn steroids have me so wired it's the only way I can sleep.
....then comes a night of restless, unsettled drug induced sleep followed by a very hazey groggy morning struggling to get my bearings. And it begins again. Lather, rinse, repeat.
I look at this routine that is currently my life and think...how the hell did I end up like this? My entire existance is based on drugs. Drugs to stop pain, or stop smoking, or not be an anxiety ridden mess, or stop my brain from malfuctioning. Drugs to sleep, drugs to wake up again. I understand my doctors think they're all necessary- and honestly, I know without them I'd be in a lot of pain in some cases. But at what point do you have to finally just say...enough? I feel like I am on way too much, and I shudder to think what my body would even do if I suddenly stopped them. I'm guessing go into one hell of a shock and revolt against me hugely. But I guess that's my point- I am dependant on all these drugs just to exist. That....bothers me immensely.
Has my body really gotten so fouled up that I 'need' all this to live? And IS it really living if your entire existance is based on chemicals regulating every fuction you have? I'm not sure what the answer is, and honestly, I'm not so sure I even have a choice at this point either way. I just know there's got to be a better answer than pumping my body full of toxins and drugs day after day.
Just my thoughts... Mis
Monday, March 2, 2009
The 3 day IV infusion of the steroids went well. I could tell a HUGE difference within hours of day ones. By the end of day 3, Wayne says I was "power walking" everywhere. LOL. Honestly, I have not been this free of MS symptoms in about 8 months. I know it won't last and I'll eventually go back to my baseline, but needless to say I am thoroughly enjoying the break while it's here. I'm even taking Morgan shopping at the mall (yes, the mall, don't faint) tonight. Something I haven't had the strength to do in well... years.
As I mentioned before, my MSRS score (MS severity score) was a 25 before the relapse. At the middle of it, it was a 53. I just got my top score at the worst of the relapse- which was a whopping 71. (yes that's very bad). Thanks to the IV infusion- my MSRS is now a 17. That is the lowest it's ever been since being diagnosed. In fact, that's incredibly low, period.
Now... this is coming at a cost. It is now about 4pm Monday afternoon, and I've slept a total of 9 hours since 8am Friday morning. I'm averaging about 3 hours a sleep a day. Yesterday I was up at 8:30am, and didn't finally sleep til 10am this morning, and then it was a very fitfull, restless sleep for maybe 3 hours. I mean to tell ya, I used to be quite the little 'party girl' many years ago, and I've NEVER been this wired and geeked up in my life. Yeah the energy is a nice change, but right now I am so tired yet wide awake. It's hard to explain. It's like my eyes are so heavy, and my poor body is begging for sleep, yet I simply can't. I'm now on 60mg of oral steroids, that will slowly taper down over the next 20 days til I'm off entirely. Which, obviously is a lot better than 1000mg straight into the bloodstream via IV once a day for 3 days, but man. This is some seriously rough stuff. I have to stop at the pharmacy to pick up a prescription refill, and I'm going to ask the pharmacist if there's any OTC sleep aids I can safely take with all my other current drugs. ANYTHING to actually sleep!
So, that's where I'm at. Loving the lack of MS symptoms, but feeling like a speed freak that's just topped off some pills with some crystal meth and a side of crack for good measure. Heh, anyone want to place wages what the 'crash' from all these roids is gonna be? I'm guessing I'll eventually pass out for about 24 hours straight. At least.
Be well all... I'm off to run a marathon! Muahaha!