Tag Archives: MS

The Awakening

A couple of days after my last post I found myself in the Emergency Room.

It was something I wasn’t expecting at all. Despite what I had written about a few days before, things had been relatively stable.

It was monday morning. I took 8 to school. I was in a good mood, a productive one. I took my iPad and phone up to my bed. I was sitting there making long needed appointments for the family. My cats were curled up near me. I was on hold with one doctor’s office. Suddenly something came over me. It was like a “whoosh” feeling that began from my head and went down to my toes. I couldn’t explain it then, I can’t explain it now.

As that happened I suddenly fell over to the left. My whole body just tilted over. The tremors began. I grabbed the side of the bed to keep myself steady. I was aware of what was going on, but I was terrified. My eyes wanted to close. I struggled to keep them open, and my head up. I was dizzy. Just trying to grab my phone to find someone, anyone, felt impossible. I cried. I tried calling my friend Jess. No answer. Then my mom. No answer. My husband. No answer. I managed to text my brother who would know where our mother was. Told him it was an emergency. He called me back. I explained what was happening. He told me she was out of town for a day. Something about Galena. Ok.

I told him I think it’s a seizure. Not sure. I’ve had this happen before the last couple of months. A couple of times. Not sure why or what they were.

Jess finds me first. She says she can be there in a half hour, she’s out. I call the doctor, talk to the nurse. She tells me she will not hang up until my friend gets there. We have a 30 minute conversation. In that time, I finally stop tremoring enough to lift my head. To walk downstairs. Husband calls and he immediately leaves work. Jess arrives.

The nurse told me to go to immediate care which I didn’t think twice about, but now disturbs me because with their limited ability to treat me whether it was a seizure or my MS, why would she not tell me to go to the ER? Because I went to the immediate care. They couldn’t do anything for me and within 45 minutes they sent me to the hospital. Where I spent the next five hours.

Tests. Tests after tests. The focus for some odd reason was on my chest. At one point the technician came to get me for a chest x-ray. Now here’s me, in a hospital bed, thinking either I had a seizure(as I had epilepsy as a child) or it was a rather odd & wicked MS exacerbation, and someone wants to take a picture of my chest? It made no sense. And as someone who has spent the majority of their whole life in and out of hospitals, I questioned it.

Later it turned out my blood tests showed mild clotting, which they then told me was also common in those of us with MS & other immune disorders. So then I spent nearly 2 hours taking in radioactive fumes via mouth to light up my lungs to check for a blood clot. Which was, surprise! Negative. I could have told them that and saved my insurance a lot of money.

I was discharged and told not to drive till I saw my neuro later that week. And when I saw her, she told me she didn’t think it was a seizure. Despite my mother sitting there saying that she dealt with my seizures for nearly 2 decades and my descriptions of what was happening was damn similar. The Neuro’s reasoning was that I wasn’t unconscious.

I have no words. So angry. I think I’ve read more about my type of seizures over the last 44 years(I developed them age 1, they slowed down by 20 with only two in my twenties that we know of) than she has. I recounted this whole visit to my father that day. And he said the same, ” you were NEVER unconscious during your seizures”. I knew this. They weren’t the typical. I lost faith in my Neuro that day.

We’re still not sure what’s going on. I’m noticing a pattern. I thought they were panic attacks. But I don’t think so anymore. It’s something else. The Neuro wants to think it’s a combination of MS and hormonal.

Whatever it is it threw a monkey wrench into my life this week making me feel as if I couldn’t even take care of my own family. My friends were amazing and I owe them everything. They took care of 8, picking her up and driving her everywhere when I was unable to drive. I don’t like asking anyone for anything so this was hard for me.

Next weekend I restart the Tecfidera. My mother told me after the Neuro’s appointment “You put everything off, to take care of everyone else. But now you’re seeing the end result. You’re actually getting sick. They need you here to take care of them, so it’s time. Take the meds, or you won’t be here for them “.

I’ve gone this long. Nearly 25 years with minimal medication. I’ve defeated so many odds according to the doctors over the years. But I’m no longer invincible, I’m not the superhero I thought I was.

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Where you Belong

Humbling.

Frightening. Thought provoking. Terrifying. Laughter. Tears.

These are the thoughts, the emotions that I felt while finally finishing the documentary When I Walk by Jason DaSilva. We started this two months ago when it first aired. Me being myself and my husband J. A small part of me didn’t want him to watch this. I knew how difficult it was going to be for him to see it. Another part of me wanted him to understand what I felt day after day, even though Jason’s diagnosis & experiences were more severe than what I’ve dealt with over the 20 something years of my diagnosis.

It was too much for me at the time. There was so much more going on. So I set it aside.

It was time to finish it. I knew it would be painful to watch. I wanted to reach into the screen and hug both Jason AND Alice. Alice stood out for me for her selflessness, for her deep devotion to him even though he was already deep into the physical and mental symptoms that MS can cause. Sure, she was already familiar with it to an extent because of her mother, but she then went and fell in love with this man who was PPMS which is the extreme on the MS stratosphere and she stood by him. She loved him, took care of him in his darkest times. She married him and lived her life. I worried briefly while watching the documentary that people/caregivers of those with MS would come down upon her for at one time need to be free, to go do what she needed to do, what she had done so often before being with him. I turned to J and told him ” I’m not mad, I understand her. This is why I give you your freedom to do what you need to do. I won’t hold you back”.

It’s painful for those of us with these illnesses that have little hope of improving. Me? I’ve been RRMS since 94(officially) but I had symptoms for nearly 4-5 years before this diagnosis. It’s 20 years officially in a few weeks since I was diagnosed. I always speak of it to others as the date when the symptoms first appeared. It feels right because it’s so hard to diagnose. Or in my case, I had no insurance so I suffered until I was able to finally see doctors without being charged an arm and a leg. Which sounds funny, because now that’s precisely some of the body parts I’ve lost along the way with this illness. Not literally. They’re just hard to move some days.

It’s not formal but I’m fairly certain I’ve entered that stratosphere of SPMS, which is the gradual progression of RRMS. My doctor marveled for so long over how far I had come, especially since I was one of those skeptics who wouldn’t take the medications and who took them very briefly over intervals throughout the years. The side effects hit me so hard I couldn’t function.

Granted after 20+ years I’ve had some serious setbacks. Some physical, now some emotional as the MS does take a toll on you mentally after a while. For me it’s panic attacks. I’m afraid of driving and the circle around me has shrunk. It upsets me on a daily basis since some days when I get in my car to go to the grocery store I’m not sure if it’s going to hit me. I can travel to my daughter’s school and the immediate neighborhood with no problem. But some roads provoke the issues.

I’m exhausted all the time. I hate going up and down stairs. I’m afraid to go running or exercise because my legs feel so weak afterwards. I can’t do a lot during the summer with my kids because the heat becomes unbearable. My vision has become horrible. And like the driving, I have good days and bad days with it.

I’m not going to lie, so many times over the years, especially the last two, I’ve given my husband the option of leaving. I don’t want him to deal with me like this. I don’t want him to be subject to my bad memory, my irritability, or ability to not want to get off the couch for a few days when the heat is unbearable. I feel like a failure during these times. He however, has told me he’s not going anywhere. Some days I’m happy when he says this, there are others I feel guilty. Because I feel he deserves better.

Yet, isn’t that what we who have disabilities, illnesses think and feel often? We have to get past it somehow with our self-esteem already taking this hit, we have to find a way to still love ourselves. I try. I really try. I miss writing. I don’t do it as often and when I don’t it takes me a while to realize how much I’m suffering. But my mind works slower, my thoughts are many, my fingers can’t keep up.

For me, this documentary opened up a lot within me. I’d been avoiding the meds for so long. Rather I’ve had horrible experiences with them and though I’ve had the new drug sitting in my cabinet for three months I’ve yet found the right time to re-start it. The tecfidera.

We decided after watching this documentary tonight that I start October 1st. Especially since I’ll be on the lowest dose possible for a long time. I can’t put this off anymore. I can’t get in my car. My eyes are failing me. The other day as I was sitting here my left thumb started convulsing. Not to mention I just may be having seizures again, of which I had on a regular basis from the time I was a year old until my late teens. There are little signs, signs I’ve called my mother with often trying to figure out if that’s what’s going on.

Lately I’ve felt like the neurological enigma.

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Greetings & Salutations

It’s been a while. It’s a New Year.

I disappeared. I had to.

Life has been life the last few months. My mind has been ridiculous. It goes from one thing to another and won’t settle. Sometimes it does settle and doesn’t return for a few weeks. So maybe the previous sentence is an exaggeration.

Last I wrote I talked of some health issues.

They’ve remained the same. The MS has been a bit aggressive. In ways I wish it weren’t. Some days I wonder if I should just turn this blog around into one about the MS because in reality I’ve had this for over 2 decades and I’ve been through so much that maybe I may inspire someone or maybe I may piss someone off. Either one would be fine with me at this point. I can’t hope to be everything to everyone. No one can. That would be impossible. So that is the conundrum, should I or shouldn’t I? I’m leaning toward the latter which leads me to-

I want this to be the initial “Hello” after so many months of not writing. Of not being able to write. I was honestly paralyzed with fear about writing here. So I’m going to break this down a bit.

– 16 had a lot of problems with depression his first semester. It wasn’t pretty. And he basically came close to failing half his classes. But pulled most of them up last minute. Still. He was miserable & it was a horrible experience to deal with. He’s ok now. Second semester he loves his classes & he’s doing “ok”. He’s such a sweet kid & after talks with friends I’m working out ways to get him more socially involved, through methods not really explored before.

– His school come December at our annual IEP meeting had no record of him having Aspergers. His father and I sat there with jaws dropped going “what the fuck?” as they discussed the points of his IEP and what his issues were. He had been diagnosed for a few years. None of the records matched what we came to the school with. Hell, I signed papers for them to contact his doctors about his diagnoses at the beginning of freshman year. Apparently they never contacted his Psychiatrist. This is what she told me. She showed me all of the records of contact from the schools over the last few years, and not one contact came from the High School. I was furious. A year wasted. Interaction wasted. I just can’t even talk about it anymore without wanting to scream at someone at his school. It’s honestly something I can’t speak of without becoming dramatic.

-My anxiety & eye issues are related. This was made clear by my Neurologist in December. Oh, December. There were two weeks full of school meetings and numerous Dr. appointments. One of them was the visit to the Opthamologist. Where they ran numerous fun tests on my eyes to check the state of my sight. And they eventually settled on the following: I’ve lost 95% of my peripheral vision(tell me something I didn’t know), I suffer from bouts of Optic Neuritis(again, tell me something I don’t know), and that the issues I’ve been dealing with since last february off and on MAY be Myasthenia Gravis. If you don’t know what it is google it, even I can’t explain it well.

Ok. So that was all settled. Good to know. I wasn’t losing my mind. However the anxiety about losing my sight has become a bit overwhelming. I don’t think I’ve communicated that to anyone. I know I’m not necessarily going blind, but with all these problems there are times it feels like I am.

Back to the Myasthenia Gravis. I saw my Neurologist a week after seeing the eye doctor. She had me take a blood test right then and there to find out if I had the antibodies for the MG. They came out negative, so she relayed to me that the symptoms I have where when stressed or tired my eye muscles just shut down my eyes which mimic the MG are just really unusual symptoms of the MS. Oh yay. Not surprised, since after all if there’s an extreme reaction to a medication I’ll be that 8 % that has that reaction. So why wouldn’t I have the weird symptoms of MS no one else has? Or at least rarely has.

I’ve had so many flares or something similar to them over the last two years, while I’ve been driving that driving has become something I approach with trepidation. I don’t drive at night, and the idea of going out near twilight hours actually will throw me off. Which is why I’m no longer allowed to.

After the accident in our own driveway in May where I hit J’s car there’s no way I’m allowed to drive when my eyes aren’t doing well. When I’m tired. Or when it’s close to being dark. Even on clear days and his car is parked on his side of the driveway he moves his car when I need to pull out. It’s that bad.

-A few weeks ago during a bad ice/rain storm that came about just after a wicked snowstorm I found myself experiencing my first frightening car accident. I hit a huge black ice patch, my brakes wouldn’t work no matter how hard I pumped them, and I had a choice of either going head on into a busy intersection or pulling hard left into a tree. The tree won. With my 7 yr old in back I pulled the car as hard left as I could and though I was maybe going 5-10 mph I managed to fly up the curb into the tree. We bounced off the tree and my car was stuck there. There was a lot of screaming & crying from both of us. We went back to my friend’s house. Her husband pulled my car out, and my mother & her husband came to retrieve us and take us home.

Since then, the weather has remained a bit undetermined. The cold & snow has left the roads unpredictable. I hit a small ice patch the other day. All was ok but I noticed from the backseat she gripped the arms of her car seat. She’s still scared. Her dad did similar the other night and I saw her do the same. She’s still frightened by what happened. And I honestly don’t blame her.

– I’m dealing with other things that range from the bitch of dealing with disability filing to other family issues that I honestly don’t know how to think straight and write here. I’m going to work on it.

Lately music has really come into play again in my life as it has been such a big part of who I’ve been for the last…well, since I could walk, talk and sing. There were songs that I could credit in getting me to write here again but I’m not going to bring them up.

Another day…Another Time.

For now I have to say…I’m working on it. This thing called life. I’m trying to figure out how to keep going when it all seems as if it’s falling apart.

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Human on The Inside

I couldn’t write.

I would sit down and try to create something and then suddenly…my fingers stopped. My brain stopped. Whatever I was writing just didn’t make sense.

This happened several times over the last two months. I would sit in front of the computer, or my ipad, and try to come up with something witty, funny, interesting. I would go to work. It would work for maybe about five lines and suddenly, there was nothing.

The last two months have been an up and down of emotions and experiences that I suppose I couldn’t write about them. My views, my ideas, what I wanted to say changed every other day. Sometime they lasted several days. Some emotions lasted longer than I wanted them to.

September was evil. Sure it included our birthdays(mine & the husband’s- a day apart much to the joy of our daughter). However it also included one of the worst depressions or funks I had ever sunk into in history. I can’t even explain WHY it happened. The kids were back in school and usually at this time of year my energy level surges. The opposite of what it usually does in summer. However, I just couldn’t move. Day after day I would take 7 to school and I would come home and just sit on the couch. Usually reading. Or catching up on something I wanted to watch( I became extremely addicted to the show Haven via Netflix. All I have to say is WHY didn’t I start this show earlier!!).

I didn’t want to leave the house. Or shower( I did, I just didn’t want to). I did still manage to pay the bills, grocery shop, help my children with their homework or whatever emotional upheavals they were going through. Nothing here suffered.

Only me. I couldn’t recognize who I was and I pushed everyone away.

The prior months saw the beginning of what has now become my biggest downfall.

A few months ago I wrote about the issues with my eyes. The accident. My fears. My attempts with the medication.

I’ve never been able to talk about my health issues until the last couple of years. For years I swept them under the rug. In fact I pretended they didn’t exist. Yet, now they’re showing their marks in ways that I can no longer ignore them. And for me that’s been heartbreaking. It makes you feel like less then a person when what ails you defines you.

I’m fighting this in more ways then you can imagine.

The pain and exhaustion have kicked in.

The sleeplessness.

The anger. The depression. The anxiety. The feeling of “what did I do to deserve this?”. It’s a constant cycle of wondering.

My eyes aren’t getting better. In fact the other day I may have made a breakthrough into what I think is going on with them. I should know better to self-diagnose but in this case I think I really did nail it. All I know is that when I’m tired or upset my eyes shut down. The muscles droop, they shut down, I get spots and I can neither see nor move. Let alone drive.

And it all came to a denouement with a visit to an attorney.

See, this is hard to admit, no one wants to admit this. Because it makes you feel so much less as a person. Especially an intelligent one. But, my cognitive functions are slipping rapidly. I’ve been noticing it for a while but lately it’s becoming so pronounced I’m scared. And angry. And I cry a whole hell of a lot.

I was the reader. The early reader. The kid who managed to teach themselves how to read when they were 3 because they were jealous their siblings were going to school. I won spelling bees all through elementary school & even junior high. Well second place, I was in sixth grade and the winner was in seventh grade. We beat the eighth graders. So that was a big deal. My reading skills were always several grades ahead of where they should be because I was addicted to words. I still am.

However, with these issues they don’t make sense as they used to. Imagine reading a book and instead of being able to fly through it in a few days it takes you weeks. Why? Because your brain can’t compute the words. You can’t understand, you re-read the same sentences over and over. In fact really intense literature(something you once enjoyed) is no longer something you can handle. It literally makes your brain hurt. You keep trying though. And when you can’t, you feel like a failure. And you cry.

This has been my life the past year. Especially the past few months.

Writing? No. So many thoughts and ideas that should have been given a chance lay deep within my mind. I wish I could continue but I fear the worst.

My dream as a child? To be a writer. It has never left me. This is where I gave it that shot.

I have so many half-written stories it’s ridiculous.

Recently I found a book of poems. Poems that I had written in high school. Some were honestly pretty damn good. Dark, but good. I realized I’ve always been that girl, just in so many different incarnations based on where I should be and what society wanted me to be.

Back to the eyes.

I don’t think they’ll ever be the same. I have days where they droop on one end. Or one sees spots or double vision. It happens whenever I’m upset or stressed, or fatigued. It terrifies me. My biggest fear about this illness coming true. I’ve always been afraid of losing my sight. And with this, I don’t know how soon it may truly happen. And there’s no way of telling people, people close to me- that one day I may not see them. That I may not see my husband or especially my children.

It’s been so many years. I know I’ve been lucky according to the doctor. Symptoms including diagnosis it’s been 23 years before the progression. But at this point I wish it had been the lack of usage of a hand or foot. Not my eyes.

I’m in the midst of fighting for disability. People can look at this and say “well she can write”. Sure, however it’s taken me 2 months to do so. And I’m sad and angry about it. I can’t be who or what I was before these last few months. Life is no longer what it seems to be.

I don’t have any great message in all of this.

I just know that I’m trying to get through this the best I can.

And hopefully once I can get past the next few months of recouping medical records(of which there are many) and dealing with my normal day to day, I can get back to writing.

In a few weeks after some dastardly dental issues are taken care of I should be back on the low dose of the Tecfidera. For a VERY long time.

Until then…my opinions are many. And will resurface hopefully in some way or another here some day.

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Time to Breathe

I realized I haven’t written anything in the last few weeks aside from that very personal story that took me years to come clean with.

This summer has been one full of surprises, resolutions, and heartbreak. It’s also been full of bugs. Well not the ones I usually write about.

The beginning of summer started off with me starting the Tecfidera. Then just as abruptly as starting it I ended up stopping it. It took me so long to agree to taking meds again that this abrupt discontinuation of it felt like once again I was failing. Or rather that I was giving up too soon. So many others I knew were continuing on, soldiering on despite the myriad of troubling side effects.
At times I questioned whether they were setting themselves up for serious fail, whether dealing with some of these side effects(especially the more intensive ones) was a smart thing to do. I can’t speak for them, I know some who have had to give it up, and others who keep plugging along. And I admire and love them all.

However I know how I react. Again, it’s that paradoxic reaction I spoke about before. I am hesitant to go back on the Tec. I have read a few accounts by more and more new patients who state that their doctors are starting them on much lower titration schedules then the one we were all initially given. I have to applaud these neurologists because I believe that thinking this through and changing the guidelines may help so many down the line.

I must mention, I will try it again. I just plan on starting again at the 120’s but for once a day and for SEVERAL months rather then for just a couple weeks.

Ok, MS meds aside.

Summer has been ok. Annoying mostly. We’ve had the kids birthdays. Of Course. C turned 16!! This kid has grown up so well. Unless you count the times he’s told me I suck & he’s moving in with his dad. Many of his issues he’s seemed to outgrow. There are times I look at him and wonder if the Aspergers symptoms are really there. While he has the social hesitancy with new people, I also know that when he went to the family camp with his dad in Pittsburgh he had a blast & made a lot of friends. So I don’t know what it is out here that holds him back.

Today we had registration for sophomore year. I watched him from a distance and realized he towers over so many of the other boys his age & younger. The school nurse, who I came to know well from school meetings, saw him today and exclaimed how good he looked, and how tall he’s become( 5’10-not from my side). The thing is, he really is a handsome kid, if only he realized that.

I have high hopes for this year. Next week we’re going to Target for him to apply for a job now that he’s 16. Plus he’s thrilled by the idea of making money to feed his video game habit. I just want him out in the world. He’s smart as hell & lately all teenager and nothing more. I admit I will miss him when he goes back to school.

E turned 7 and is more like 16 these days then 7. She definitely knows who she is and what she likes. Some days she rules the roost around here. Well, not really. I put my foot down when she’s getting out of hand but at the same time I want her to explore this confident side of her self. When it’s out of hand I let her know.

Otherwise this summer has been me just trying to get by. We went to Rye, NH for the yearly family vacation with J’s family. We always have this wonderful, food exhaustive, and booze soaked 9 days that takes my liver a week or so to recover from. It’s enjoyable and at times exhausting. Mainly because my kid & her cousins had zero concept of time and would wake all the adults up at crazy early times in the morning. Eventually I started locking our door when E left to find her cousins. Then I slept in until 10 if I had the chance. Because at home it sure as hell wasn’t going to happen.

Since home I’ve had spider infestations, reconnections with a sibling, and reconnections with friends I thought lost for good. It’s made me happy. Well, not the spider part. That wouldn’t make anyone happy. Unless you were a shut in.

I’m a very melancholy person. I appreciate everyone(almost everyone) who has ever come through my life in positive ways over the years. And lately there have been people I’ve felt the need to reconnect with and make amends to.

There were some I were close to that I don’t know why I lost touch with in the first place other then stupidity and being a kid. In the past year a couple of them have come trickling back into my life & it’s made me immensely happy.

I don’t say goodbye and forget about people for forever. I don’t know what that says about me. I just know everyone comes into your life for a reason, and some aren’t meant to be lost.

This coming school year, I plan on taking time to figure things out for me. I plan on working on the two novels I have going. Both are complex, and they took a backseat to the craziness of the last few months. My goal is to finish at least one of them in the next six months.

Music is once again at the forefront of my being. I let it lay dormant for so long. This obsession of mine. For so many years it defined me. It brought J & I together. And I let it dissipate. But not anymore. I’m trying to remember what songs & bands I loved and why. I was introduced to a band recently that rocked my world making me wonder why I didn’t know who they were before. Then I remembered my funk.

This year will be different. New connections. New starts. Positive thinking. And New Starts with old friends. And resolutions with people that were a long time coming.

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And in the End…

Last I wrote I had begun the medication and aside from the basic side effect of flushing & the fatigue which led to my dosage being lowered with the initial titration I was fine.
Then things changed swiftly. The first two days of the 240 dosage I was prepared for the worst, but it never occurred. The day after the first day was my daughter’s birthday party with her friends and we were taking the girls to a movie. It was within an hour of leaving the house that the first symptoms appeared. I felt nauseous & had to take a bag of animal crackers with me to keep myself from throwing up in the theater with five girls in tow. I made it through the movie and the rest of the party. However not long after everyone left I was curled up on the couch in the fetal position in pain. Later that night it passed and I made a point of going to bed earlier than normal so I could feel human.
Which the next day I did.

However that night I took my third 240. And within 2 hours something didn’t feel right. At first I blamed it on the really bad sangria I was drinking, which I had only had three sips of. However as things progressed, the night became worse. I couldn’t sleep, my stomach was in agony. My back was seizing. I spent the night feeling like hell, I didn’t sleep except for 45 minutes close to the time I needed to be up to get my daughter up for camp. I was hurting in a way I never felt before. The exhaustion was something I couldn’t deal with. I came home from dropping her off and fell asleep. But the pain woke me up again a short time later and at that point I called the doctor. I reached a nurse who after consulting the doctor called me back telling me that I needed to stop the Tecfidera immediately.

Now this is the first medication I had been on since my aborted attempts with the Avonex over 9 years ago. I had to go on this mainly because my eyesight has been the main failure with the MS after 25 of having it. I sometimes feel awful because I’m fully functional compared to so many of my peers. Sure I have moments, weeks even when I don’t think as well, or function as well as I should. But I know that I can run the trail with my dog or clean my house with abandon. And I feel guilty. I see and read the stories of those who can’t do half the things I can and I feel miserable.

However I spent so many years fighting this ridiculous illness and doing what I wanted because I knew that there would come a day that if I ever stopped fighting I would be succumbing to its hellish consequences. However since these initial feelings I’ve become connected with a community that has people who have progressed much further past what I could have ever thought. They feel the pain and limitation that I don’t have yet. And I say yet because there is always that chance. Someday it will, and might come. And probably will.

I knew it was bad that day when I called my husband at 2 pm in ridiculous tears. I couldn’t eat, lay down, sleep, stand up or breathe. He left work within 20 minutes and came home to me & to pick up our daughter from camp. He had never in all the years we were together heard me in this much pain. I couldn’t function. I wanted to soldier on. I knew that the drug was still new. Though it had been through trials it was still new. At least to the general population of MS patients. We’re the guinea pigs for our neurologists. As we go along dealing with this medication they’re learning about it. There are always certain side effects that are given however, this doesn’t cover the whole spectrum. There are always going to be side effects that occur that no one anticipated and others that reached a severity that wasn’t supposed to be documented.

But we’re the documentation.

The initial titration schedule with the Tecfidera goes as follows: 2 120mg a day for a week, after that one graduates to the 2 240 a day schedule. Now this is when things goes haywire for many. There are many that don’t feel the side effects after going through this change. There are quite a few who go through very severe GI side effects that choose to power through them no matter how long and hard they are. For some they last a few weeks, a few months.
There are those of us who look at this as being something that is non-negotiable. For me I spent that last 24 hrs of severe pain on the phone with my Neuro’s partner at 9 pm wondering what to do. He wanted me in the ER hooked up to an IV of a cocktail that would deal with the pain. I told him I had a chance to acquire an Ativan via my mother. Which is an anti-anxiety drug. He said “oh yes. Try that first, it might make the spasms subside. If they don’t, go to the hospital immediately.” By the time I called my mother back she was almost in my driveway. Within an hour of taking the Ativan I felt calmer. I still had the pain for three hrs afterwards. Then I slept for almost 8 hrs straight. And felt better.

The next day I felt a little better. I had more energy than I had the day the day before. My husband decided not to chance things, and called in to work explaining the situation. I left that afternoon to run an errand. That 40 minute errand proved to be the wrong move. A short time later we had to stop by my mother’s, then pick up our daughter from camp. By the time we arrived to my mother’s my insides dancing to that tune. I was in pain again. My mother put an ice pack on me when we arrived and while J went to get our daughter from camp I sat there with it on. By the time he returned back I felt much better. And as that night went on I felt even more so. I took another Attivan a few hours before bedtime. By morning I was a new person. Though by daytime I felt a little loopy. I felt stoned as evidenced by my conversation with my friend Jess. I sat in a parking lot talking to her laughing so hard she laughed. BUT I felt like ME again.

The next day the Dr. was finally back in the office and we talked about what to do. She admitted that what we needed to do was bring the titration schedule down to 1 120 a day for three months. Not everyone was responding well to this medication. It seemed that the schedule was not in tune with everyone’s GI systems. This was evidenced by what I had been seeing on this support group for the medication I was involved with. So many were reporting the same thing.

My family has this bizarre reaction with most medications. Particularly my mother’s side. We have what’s called “paradoxical” reactions. Our systems don’t match up to what we’re ingesting, and though the drug may cause only a few mild side effects it’s not uncommon for most of us to end up with the most extreme reaction on the first try. I’ve seen this happen with my mother, my brother, my aunt, and myself.

I can’t take a Tylenol sinus without falling asleep within two hours and staying asleep for nearly 16.

This has caused a conundrum for me when it comes to the caring & treating of this illness. This disease. I don’t know what to call it anymore. It’s just something that has made my life unusual & at times unbearable for well over two decades.
I will give myself a break( I have been this past week) and move on. I will restart the medication at slower dosage in a few weeks. Thankfully my doctor understood that I needed to take time off due to July being so busy.

I need to make clear here and now that not every medication comes with a warning label, and it doesn’t come with a label promising a cure. MS will not be cured. At least not for now. However with the rate things are going, I hope that perhaps some amazing discovery will occur that will lead a slowdown of symptoms and progression for those of us with this strange, and befuddling illness. I would honestly like to see a cure in my lifetime. I would like to prolong the inevitable. I would like to be able to see my children grow up, my grandchildren grow up, and the world evolve even more.

However our skepticism toward the medical industry needs to remain grounded & well fed only when necessary.

When something amazing presents itself, we need to grab onto it and give it a chance.

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The Simple Story

The adventure has begun. It began ten days ago on a sunday evening.

The little blue and white pills sat in their little black case waiting for me. The deal was that I would take them & they would slow down some of the symptoms and flares that had been taking place for a while. A long while. Way too long.

I stared it down. It didn’t move. It mocked me. I did what all the lovely people on the support group page told me to do. Take the 1 aspirin, eat, wait a little while, then take it with a lot of water. Enough water to keep a camel happy for a year. And I did most of that. Except take the pill part. Instead I stood there putting it in my mouth, taking it out, putting it in, taking it out. I was nervous. Terrified. I knew how much life would change. Then my 6 1/2 yr old piped up and told me to just take it “Do it for your health”. Who can argue with that? So I took it. And waited. For anything & everything. I was nervous so I walked around a bit. Cleaned a little. Then I remembered The Tonys were on and that took some of the worry away from me. Damn, Neil Patrick Harris should host all awards shows from now on. I really hope Tim Minchin wins a boatload of awards for Matilda. These thoughts kept me preoccupied. Then slowly but surely I was getting warmer. I couldn’t figure out what was up. I kept looking at the air conditioning system and adjusting it. Hmm It was 72. Why am I so hot? Took off my t-shirt & threw on a tank top. Husband & I sat down to watch Mad Men.

A short time later I was burning. The skin on my arms and chest were bright red & blotchy. It hurt. It was absolutely horrible, this was a worse feeling then giving birth. Which sounds silly but it was. I kept jumping up and down making these pitiful whining noises. A red rash popped up all over my arms, chest & legs. It hurt to walk. The feeling of fabric against my legs was torture. My husband tried to calm me down but that seemed to make matters worse, as I was in a heightened state. I quickly grabbed a wet towel and applied it everywhere. That seemed to take some of the stinging feeling away. I guzzled 5 glasses of water & took to the boards to the support group for advice. Thankfully the advice was much of what I was doing. Drinking 8 glasses of water seemed to bring it all down. Within an hour the flushing had subsided, however my legs still felt prickly & would remain so through most of the night.

This was my first dose. The next day went fine. Morning & evening went off without a hitch. No side effects. However tuesday morning was a different story. I took the medication & within 2 hrs I could feel something. I was a little dizzy, felt a little tired. More then normal. I was getting ready to take the kids to the local mall. I had promised them, they were excited to go use some gift cards. But within a mile from home I sensed the change. I was dizzier, and my eyes felt like rocks. My body suddenly felt like a paperweight. I could barely stay awake or feel anything. I made it another quarter mile to the local McDonald’s and grabbed food. Pulled over and the kids ate. I started tremoring. My left arm. Always my left arm. I argued with my mother who told me that it would pass. But I was terrified. I took a deep breath and decided to turn around and go home. I made it home and immediately came in and climbed upon the couch. I was tired. Oh so tired. I drank a huge diet coke to try and get some caffeine in my system. It’s not the best choice but I knew it would help me stay awake. Thankfully C is old enough to watch over his sister so I could try and get back to me. I did eventually feel ok. I had a second wind late at night with the night dose.

Which made me wonder if there was something to the way I was taking them. The first dose was a night dose & I had some energy with it. Morning doses seemed to make me a little sleepy, rinse lather & repeat. This went on the next day. And the following day thursday was the worst. I could barely function. It started with an argument with my contractor who basically went back on most of his word regarding fixing a huge issue his former company caused & screamed at me on the phone(my husband is still planning on dealing with him soon for that one). I was shaking. Then a family issue that had been going on was giving me such stress that my mother finally forbid my sister to talk to me about it & said that she wouldn’t talk to me about it either until things settled. I was that much of a mess.

It was by early afternoon when she called to check on me again & I could barely lift my head to the phone, and my words were slurring as if I drank a bottle of whiskey my mom knew something was wrong. She came and picked up E. She had her stay with her until J could pick her up on his way home from work. She even sent my stepfather over with a pizza for me and C. During this time I took to the phone and called my neuro. I told the nurse what was happening and when the Doctor called me back a short time later she said to just take one pill a day at night from here on out. Even when the dosage goes up to the 240. I did as she said and the next day I felt myself. I even made it to the mall with the kids. They had the best day. I even overcame my fear of drinking with this med thanks to some encouragement my by new friends in the group who were experts on the matter, and felt just fine. In fact the pill seems to go down better when an hour later you follow it up with a glass of wine.

This week I’ve been fine with the medication. Which is a far cry from my days with Avonex. I officially apologize to my husband Josh & to my ex/friend Matt for everything I put them through when they had to administer that bitch of a drug to me, and the anger I exploded with days following due to the horrendous side effects. I wish this pill had been around back then. Thankfully Josh , unless the 240 does a number on me down the line, you’re a very lucky man. Thanks for sticking around through this all. I know I give you options sometimes, but you never take me up on them. I love you for that.

I know I always said I would never go on these drugs. Or at least never give them a chance again. I’ve had some pretty strong things to say about them. And while things are going well with this oral drug, I’m still having reservations. With the rate my eyes are having problems(and for a writer, losing the ability to see is up there with death), I know I had very little choice. It’s been 25 years for me. And I’ve come off lightly compared to so many I’ve come to know and care about. There are just times I don’t want to put my body through the push and pull of the medications. However, if this keeps going the way it has then I’ll keep going. I want to see my kids grow up, and being the tough broad I am, I’m not giving up now. I’m going to stick around for another 40 or so years. That’s my goal. And I don’t give up, or let go, easily.

Before I go, I must say thank you to my new friends from this group. They’ve really helped me through the last two weeks. If it weren’t for them I may have chickened out and not taken the damn pill. Plus I’ve realized it’s nice to know that there are others out there who feel the way I do, and I’m glad to have them as my friends, current and future.

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