The BS of my MS

Well, That's Encouraging--NOT

2011-02-15T12:35:00.000-08:00

I have completed four days of IV steroids, and am now taking an oral taper so I don't go through some crazy withdrawal. Typically, by now, steroids have responded to my symptoms, and usually, I am only on three days of IV steroids. This was an extra day's worth. However, I've got nothing.

My double vision is still as bad, if not worse than when I saw my neurologist a couple of weeks ago. I have numbness in both hands and down the right side of my leg. I have a little numbness in my feet, too.

My doctor called me today and told me he was concerned that I hadn't responded to the steroids, and that I was having such bad exacerbations while being on Tysabri--the drug that's suppose to kick the ass of all other drugs. Within the month between two of my MRIs, I have 10-15 new lesions! That's not supposed to happen. So, Dr. H thinks I may have developed an antibody to the medicine--an antibody to the antibody. In other words, my immune system is really f#@*ed up.

I have to go for blood work tomorrow, and he wants to see me in his office. He's great in that he says, "Just show up; no need for an appointment." I appreciate that sense of service. But I am tired of going to all of these appointments, the money they cost, etc.

Usually, when on steroids, you get a whole boost of energy. You become wonder woman! Not this time. I told the doctor that I am so tired; that I have none of that energy I usually get, and he said he wasn't surprised. It's because I have so much going on in my brain. I also asked him if it could be causing any cognitive problems, as I have been "losing" words. Sometimes, the word escapes my mind, and I just point to what I want like a gorilla. Embarrassing. When I told him I am supposed to be writing a dissertation, he didn't seem optimistic about that happening right now. Awesome. I'm paying tuition to be writing a dissertation I am not physically capable of writing, right now? Son of a bitch.

I just hope it all comes back. I hope my vision fixes itself. I hope m mind becomes sharp and focused again--as much as it ever was. But right now, I am not feeling hopeful. In fact, I feel depressed. I have felt down for days. And there's really nothing that can be done.

Update: One Year Later

2011-02-06T16:56:00.000-08:00

I haven't posted in a year. And yet, I am in the same place I was this time last year. I had "gotten better"; I had gone into remission. But now my symptoms are coming back with a vengeance.

December 12, I had an MRI--just a routine MRI. I had a new lesion. That led my doctor to freak out about PML (a serious side effect from Tysabri), and resulted in talks about a spinal tap and eventually another MRI. The lesion was stable, and actually got a bit smaller in the 10 days between the two MRIs. Then, toward the end of January, I started having double vision. So, my neurologist ordered another MRI. I had numerous new lesions, within a month since the last.

So, now I am wearing an eyepatch to correct the double vision. My right eye turns inward toward my nose, and it is droopy. I look slightly like I have Down's Syndrome, and when I told B, he said, "Yeah, I can see that." It's from sixth nerve palsy--a lesion on my brain stem. I'm having numbness on the right side of my body. My balance is "off." Everything is harder. My actions are more awkward. I am more clumsy. I get frustrated. And tonight, I realized that I am depressed.

The thing about MS is that you never "get used to it." Each "flare" is new. The symptoms are constantly changing. And it's so on and off--it will hit hard; I get better. It comes back. It's a vicious cycle.

Overwhelmed

2010-02-26T10:29:00.000-08:00

No idea even where to begin. The home health nurse called today, since technically, I do qualify for them to come into my home to give me steroids since I was told I could not drive, due to my right leg's stiffness and weakness. We then decided that it might be more economically advantageous to try to get a ride to the hospital to get the steroids. So, I called my friend, who has been all too generous during this time, and asked her if she could give me a ride. I was going to try to get it at a doctor's office, because then the cost would be $30, versus meeting my deductible then 20% of the costs.

Then, I talk to B and he says his new insurance is taking effect on March 1. So, all of the insurance research done has been for nothing, because that insurance no longer applies. *sigh* This new insurance is a lot crappier. I go from having a $250 deductible to $1000 deductible. My out of pocket maximum went from $2000 to $4000. And there is a clause in my insurance details now for "infusion therapy" saying I must first meet my deductible ($1000), then it's 80/20. If I have to pay 20% of $8000 (which is what is billed for the medicine/supplies), I am left owing $1600 each time. I just don't have that. With my previous insurance, as long as I had it done at the doctor's office, I paid $30. Period.

Well, the nurse says I can't even get my steroids because I am sick with an upper respiratory infection or something of that nature. Steroids lower your immune system, thus making it harder to fight things off, meaning it's not wise to get steroids when already sick. She said to call my PCP, get antibiotics, get well, and then call her about steroids.

The nurse was very nice and understanding to my feeling utterly overwhelmed. She encouraged me to relax because stress would just wear me down more and is not good for MS.

I know there are options with drug companies for help, but they take time and energy and paperwork, etc. I just feel like I don't have the time or energy to deal with this. I hate all of the hoops you have to jump through when you are sick to make things work out.

More suckage

2010-02-23T19:47:00.000-08:00

Something else that sucks--I have a doctor's appointment tomorrow. And I just thought, "Oh crap. My right leg is stiff. I hope I can drive!"

I miss living close to public transit. Because out here in the burbs there is no way for me to get to the doctor without driving. And no family lives close by.

If I can't drive, I am going to have to cancel/reschedule at the last minute and try to find a time for B to take off of work.

Relying on other people sucks.

Armed with Questions

2010-02-23T10:24:00.000-08:00

The doctor fit me into the schedule for this week. He told them to overbook him, which I appreciate. I am going to see him tomorrow.

I have a few questions I want to ask. First of all, I am taking the article I cited yesterday with me to ask him his thoughts on it. Regardless of his thoughts, I am pretty convinced that I am being affected by whatever Tysabri did to folks in the study who were in a highly-active exacerbation. There is no explanation as to why one day I am getting Tysabri and the next day, my walking and balance is a lot more off; why I am getting weakness in my legs and back. I went from walking kind of slow to walking very slow, uneven, unbalanced, and contemplating a cane; it is not right.

I also want to ask him about steroid use and Tysabri. They do permit you to have IV steroids to treat an exacerbation during Tysabri. When I called their Touch Program and asked questions, I was told that they try to avoid anything that puts extra strain on the immune system. However, if a doctor sees IV steroids as the way to go, then he/she can prescribe them.

Steroids have their own risks--including hip necrosis and osteoporosis. My doc has told me that my size (to put it bluntly--I'm fat) is a positive factor in me avoiding osteoporosis. However, hip necrosis is still a risk. I've had steroids probably 4 or 5 times since April 2006, including my last round in July 2009. I don't want to use them again.

I also do not want to restart Tysabri in the middle of an exacerbation. The article talks about peoples EDSS (a disability scale) numbers getting worse after the exacerbation triggered by their Tysabri infusion. Yet, I am also scared to be on nothing at all. My MS has been aggressive in the relapse phase. I am remitting well, but I relapse a lot. And I've not been 100% since July 2009. Seven freaking months.

So, I am going in with lots of concerns and lots of questions. I trust my doctor, but I also trust my own ability to research as well as my instincts. There really is so much to consider.

2010-02-22T09:23:00.000-08:00

I am trying to figure out what is going on. I found the following link: http://msj.sagepub.com/cgi/content/abstract/15/11/1359

We describe three patients suffering from a very active formof relapsing—remitting multiple sclerosis (MS), who experiencedsevere disease worsening, associated with a marked increasein brain inflammation, a few days after the first administrationof natalizumab. In line with preclinical studies, our observationssuggest that natalizumab, when administered during active diseasephases, may worsen disease evolution possibly by modifying theregulatory network in the brain. We suggest that relapsing—remittingMS patients having had a recent relapse should be treated withnatalizumab only after achieving complete clinical and radiologicalremission.

This describes me. I was in a relapse during my first Tysabri infusion last Tuesday. When I was on it a couple of years ago, I was *not* in a relapse. I was pretty stable. My only fear is that the doctor won't take me seriously. I told the nurse about it, when I called back to check in, and she didn't seem concerned with my research (or maybe she was overwhelmed with my flood of information) and asked questions about what was going on and said she'd pass it along to the doctor. Sometimes I don't feel I am able to articulate what is going on.

I am trying to get full-access to the article through my friend who is a doctor. I really hope they would give some credibility to this when it seems like it is exactly what is happening to me.

I feel at a loss. I don't want to be a drama queen, but I also don't want to screw around with something that could make me worse. I waited over the weekend to gauge how things were going to see if it was just a fluke. But it's not.

If I'm honest--I am concerned. And that's what I tried to express to the doctor. I hate bothering him, but I guess part of his job is dealing with my concerns. Right?

2010-02-19T09:20:00.000-08:00

When do you need a cane? The other day when we were out, B said, "If you continue to be like this, you'll need a cane." I was shocked that he would suggest that.

I've been off, lately. When I get up for any amount of time, my legs get weak and my balance gets off. Turning corners is especially awkward. I thank God for walls.

I ran into a bookshelf, today, at home. No books are on it--just photos. And a tall statue sits on top. I caused it to tilt back and forth. Thankfully it didn't fall and I was able to steady it.

Part of me is like, "I don't need a cane. I'll just look foolish with one." As in, people will just think I am dramatic. The other part of me is like, "Do I need a cane? Am I in denial?" You always want to think you're not bad enough for that.

I mean no offense to people who use assistive devices with my reservations. I just don't want to get one if I don't need one. But don't want to be scared to get one, if that is what is best.

Decisions, decisions.

2010-02-17T17:22:00.000-08:00

Tonight, we went to grab some dinner and to the grocery store.

I have no been up doing stuff all day--I've been pretty stationary working on some school work.

But I went all out gimpy. My gait was uneven--heavy back and forth on each leg, if that makes sense. I was swaying when standing, often grabbing the cart, etc. My legs seem to be in a constant locked-knee state when standing.

This is all sudden. B said it seemed to even get worse in the store. Granted, that could have been walking around agitating the problem, but the problem was still there from the beginning.

I have no idea why this came on so suddenly. Of course, I am thinking "Damn, I got Tysabri yesterday. How fast does it take to get PML?" It was my first infusion about 24 hours ago. Likely doesn't set in like that. But this has been scary, whatever the cause.

And no one give me a spiel of BS from the "fact sheet" from Biogen. I don't want to hear it.

B even said that if this lasts longer than a day, I should get a cane. And he said he was really worried. Must be bad for him to verbalize that, since no 29-year-old wants a wife with a cane, and he doesn't usually express things like that to me.

I'm worried. I am hoping it's a fluke for a day. But even for a day--the sudden shift has me concerned.

2010-02-08T11:18:00.000-08:00

I am facing a difficult decision. Previously, I was on Copaxone. I was on it for about 5 months. I started having some new symptoms on the other side of my body, which made me think something in a new area of my brain was going on. So, I went to the neurologist and an MRI confirmed that, yes, in fact there were new lesions and new activity going on in my brain. The neuro determined Copaxone was not doing anything for me and had me stop it. (Gladly, by the way, because I hated it with a passion!)

He also recommended I go back on Tysabri, as that was the only thing that seemed to work in terms of MS medications. I had been on it for almost 2 years and went off of it about a year ago, in hopes to start a family. Life circumstances changed, a baby was not in the immediate future, doctor didn't feel comfortable with Tysabri anymore, and had me go on Copaxone. His words were, "I am not convinced with Tysabri, but for some reason it worked for you. So that seems like the best option."

I agree, in many ways. For almost 2 years, I had no new activity in my brain--no new lesions. I seriously pretended like I didn't have MS except for the monthly 2-hour infusion I had to endure. Otherwise, there was no reminder.

However, now I am having some questions and doubts about going back on it. There are risks, namely progressive multifocal leukoencephalopathy, which is a rare brain infection in folks with compromised immune systems. It can cause mental retardation and even death. There have only been 31 cases of PML since the drug was reintroduced on the market in July, 2006. Eight people have died. And while that is a small number, relatively, there is no indication that these people were "at risk" in any way. It's just random. As a result, the FDA has issued an alert.

Second of all, I am not ready to get sick all the dang freaking time. Previously, I had a severe sinus infection, upper respiratory infection, bronchitis, etc. I caught *everything*. That's a set back, and while it's not deadly, it still is less-than-welcomed.

Thirdly, I do want a baby in the next couple of years. I am trying to finish my dissertation and then we'll see where we are. However, because of the relative newness of Tysabri on the market, there is little research about how Tysabri affects fertility, babies, etc. once a woman goes off of it. It's class C, meaning it affects babies in-utero. But what are the effects afterward? I don't know if I want to chance it.

I am pretty young; only 30 years old. So, I have a lot of time to live with MS, and I don't want it getting worse or increase its activity or cause disability in me. However, I also have a life to live and I don't want the MS medication to take away from that.

There is so much to think about.

2009-09-25T13:04:00.001-07:00

My hand numbness is getting worse. Also, my leg is gimping out on me. B noticed that I was kind of stumbling along. It's like my leg is stiff or extra heavy. Great.

My anxiety has also been acting up, in the last week or so. There's no reason but I sometimes wake up at about 4:30 anxious as can be.

Have I mentioned MS sucks? Seriously. I can't type without making a ton of errors, which makes the whole dissertation thing tough. My mom mentioned getting Dragon Naturally Speaking, or whatever it's called--translating speech to text, but a) it's money I don't have and b) not sure how that would work with formatting, footnotes, etc.

MS doesn't care that now is not a convenient time to rear it's ugly head. And you know what I say? Suck it!

2009-09-22T12:51:00.001-07:00

I can't really feel my right hand. My doctor called me in last week, but said there was nothing that could be done (no shit!). He mentioned the risks associated if it would come to steroids again, including hip necrosis. He has theories of what causes it as well as the benefits of steroids.

I would type more but the numbness in my hands keeps me from typing accurately. Bummer since I am suppose to be making progress on my dissertation.

2009-08-24T12:52:00.000-07:00

I have a friend with two kids. She sometimes gets in a pinch and needs a babysitter, so I have offered to help her out as I can. Recently, she asked two people in front of me, but never me, if they could help her out on a day. Also, she never really responded to the e-mail I sent her letting her know I could help--not even a simple "Thanks. I'll keep you in mind."

Then it dawned on me--does she think I am incapable because I have MS? I don't want to jump to conclusions, but I can't help but wonder.

2009-08-16T08:35:00.000-07:00

So, this week was a bit better physically. I wasn't as completely drained and exhausted as last week, which is good. Emotionally, it was a bit trying, but that was mostly non-MS related.

As I think about it, part of it is related to MS, I suppose. B and I want to start a family. We have had to plan, in advance, due to the various MS medicines I have been on. By the time it is time to start trying, something else comes up putting plans on hold. It does make us wonder how the next time will work--going off of medicine, waiting for my body to be med free, then trying. We'll see. So, the emotionally difficult part was that my friend had her baby this week. I rejoice with them. Seriously, I am so, so happy for them. But my heart hurts, too. Both Brad and I feel a tinge of sadness.

Something strange happened on Wednesday, proving I am a doofus. I took my steroid pills (it was a four-steroid-pill day) before going out to dinner with B. When I was going to bed, around 10:45, I realized that the pills on my nightstand were not my steroids; they were my Baclofen (for muscle spasms). At that point, I had already taken my pills for the night, including the Baclofen as prescribed. However, apparently I had also taken 4 Baclofen around 3:30. Since it had been almost 8 hours, I figured I was fine--I wasn't going to die. My key concern was a sudden spike in dosage and then a sudden drop the next day, as you tend to slowly increase/decrease dosages. I called the nurse and let her know what happened, and she said, "You weren't wobbly? A noodle?" Um, no. I mean, I may have been a bit unsteady after dinner but I thought that was from sitting a long time, dim lights, and a really good lemon drop martini. It was nothing that raised a red flag.

Thankfully, it wasn't as scary as it could have been. Had I taken 4 Ativan (an anti-anxiety medication) at once, that could have been bad, particularly with alcohol. I feel like the grandma that people worry about, confusing her medicines, etc. It was a mistake though--an honest mistake--that I won't make again!

This is my last week of steroid pills, thankfully. I am tired of being hot, even when my arms and legs are freezing, I feel like I am on fire. I wake up all wet with sweat, and I am not a person who sweats much if at all! I haven't been sleeping quite as much, but that's because of the semi-insomnia steroids can cause. Thankfully, that has been kept to a minimum this round. As a result of the steroids, I may be slightly less numb in my hands. My eyes don't hurt as much as they did in the beginning, but they are not as pain-free as they were mid-course of IV steroids. Some other things--it's too early to tell.

Can I say, though, that I am sad I didn't get to skip my period this time? I know that's TMI, but often, I missed my period altogether when on steroids. It's probably better this way, as I only have on every three months as it is. But still...I was hoping. Dealing with a flare, steroids, and a little should-be-monthly visitor isn't my idea of a good time.

2009-08-08T11:22:00.001-07:00

I am exhausted. And it's one of those cases where I am too tired to really do anything, but that makes me feel blue, because it makes me bored. I am not happy just sitting on the couch watching movies. I wish I could have people come over, keep my company, play games, etc., without me having to go anywhere to entertain myself. It's a picky request, I guess, but a girl can dream.

I was drying my hair, and my arms felt too tired and too weak to raise up to my head. My hands were too numb and weak to hold the round brush. I did it, though I did not do it well. It took everything I had. Something that simple should not be so difficult.

I think this is one way MS can lead to depression. First of all, MS is three times more likely in people *before* diagnosis. So, there is something going on up in the old brain that makes it more prevalent. Then, being too tired to do anything and feeling utterly drained--it takes a toll emotionally. And so I whine.

I really don't capture the "day to day" of life with MS, because on those days, it's just life. Nothing is different (except these days, I will have a shot as a reminder that yes--I still do have "it.") But these days, it feels all-too-consuming. Not feeling my hands or feeling like they are burned/blistered/lacking feeling is a pain in the butt. Feeling dizzy for whatever reason cramps my style. Having my legs feel shaky takes even more energy to do basic things. So, I know I don't write of the day to day stuff because I can live in oblivion at that point. Then, MS comes and kicks me in the ass; it makes it easy to go into pity party mode. For that, I apologize.

We're headed out for a bit--maybe run to Hobby Lobby, get a redbox movie, etc. We'll see how I am feeling once I accomplish all of that.

2009-08-07T07:24:00.000-07:00

The good news is I didn't wake up feeling like I was having a heart attack this morning. Seriously--it's a rather unsettling feeling, regardless of the cause.

The bad news is that I woke up hurting all over. I was so tense--in my neck, shoulders, head, joints. Who knows what *that's* all about, or if it's related to anything at all. I also had some bizarro dream which was altogether disturbing. So, I woke up around 7:30.

7:30 is not that bad. One time, when I was on IV steroids, I woke up at around 4:30. That's just wrong. 7:30 isn't my ideal, but I can manage. And who knows--maybe I will actually get something done, today. (yeah right!)

I do not feel my hand getting any less numb...yet. My eye pain may have gotten a little worse, since it got better. It's not as bad as it was, initially, but there still is discomfort. I still have 17 days of steroid pills to take, so I am sure some of this could get better with that.

On a whiny note, can I just say how much it sucks to fall asleep on the couch, ready to go up to bed, only to realize that you still have to give yourself a shot? I mean, when I am half asleep, the last thing I want to do is jab myself with a needle. Oh, and today, I have a big, round, puffy mark on my leg from the shot. It's not red. It doesn't itch; it isn't sore. It's just a round mark about 2 inches in diameter. Cuteness.

I largely am writing here to document this stuff for me. That way, when my doctor says--how long has this been lasting, when did this go away, when did this start, etc., I have answers. Therefore, I understand it's not terribly interesting to anyone else, and I am okay with that.

I do look back to when I was working full time from January until May. Thinking to that time, I wonder how screwed I would be if that were now. Then it scares me--will my physical ups and downs affect my ability to have a career? I've worked too damn hard to have it all fizzle before I start. I guess, thankfully, being a professor (while a very demanding career physically and mentally) allows for some freedom in schedule, methods, etc. Depending on how I am feeling, in the future, I can adjust my teaching methodologies to adapt. Yes, that's it. I'll just keep hoping. :)

2009-08-06T08:35:00.000-07:00

So, yesterday was the last day of my IV steroids. I have been more prepared for the emotions that come with IV steroids, so I haven't gotten quite as angry--or visibly so. I have been able to tell B, my husband, that I am in a crappy mood and to leave me the hell alone. Harsh? Not when you think of what I may have alternatively said.

This morning, I woke up before 7 (which is way early for me!). I was having tightness in my chest, especially when taking a deep breath. I felt overall tight through the top of my body, and it just wasn't a comfortable or positive feeling. I felt a bit worried, actually, though the pain was not in my left side nor was it in my left arm. So, I went down stairs, thinking being up and at 'em would make it better. Not so much.

I called the nurse, and she said that all of this sounds pretty normal--not out of the ordinary--but to keep her posted. It could either be a raised blood pressure or an anxiety attack, both of which are normal side effects of steroids. It's just my anxiety attacks, in the past, are very targeted toward an irrational fear or feeling. Typically, they don't manifest as, "Oh my God, I am going to have a heart attack" feeling.

Since starting the IV steroids, I have noticed a slight difference in my eye issues. I may not have touched on this earlier, but my eyes hurt when looking side to side and up. Originally, this was associated with a migraine about a week ago, but the headache went away, but the eye pain remained (and got worse). They think it was optic neuritis, which steroids would be the treatment for that, anyways. So, we just went with it. I am still having numbness, but that's likely to subside with the oral taper I am doing.

The last few weeks have been so strange. I went to effectively "forgetting" I have MS to having all of these symptoms, a new medicine, and a round of steroids. It came on so fast, which emotionally and physically is exhausting.

2009-07-31T12:52:00.000-07:00

So, I have long abandoned this site. As long as my MS stays under the radar, I have no desire to write about. Which brings me here writing, which can't be good news.

I was on Tysabri for a year and a half. It did good things--it kept me out of remission. I went off it, in hopes of planning a family. I guess my biological clock is ticking, but also, we just really want a baby. However, we had to replace our car, and the new car payment is sucking us dry. So, no baby for us, for now.

In the fourth month of being off of Tysabri (it takes three months to flush of, so the first month during "non-flush time," I guess), I started having numbness in my hand. I have an altered sensation in my leg--not numbness, but kind of that hilarious, tickly, uncomfortable feeling you get when your fit has been very asleep and tries to wake up. It's an odd sensation, but that's the best I can describe it. My migraines have been getting more frequent, and the other day, while grocery shopping, I had to ditch the grocery cart and head to my car. I was having an accident, of the worst kind.

I went to my neuro, and he did an MRI. I have five new lesions that enhance with contrast. One is a kind of large one. The others are small. I don't know if five new lesions is a big deal or not. He seems really concerned. I could have zero new symptoms but lesions, and he would still be concerned. He says when I relapse, I really relapse. I have five new lesions. The good news, is that I remit well--there were no signs of my previous lesions on my MRI. The doc's concern, however, is that as I get older, my brain won't heal as well, causing more long-term problems.

I mentioned Copaxone to him, and he agreed. At my visit, he mentioned steroids, but we both agreed that wasn't necessary. Well, since the headaches got worse and my accident at the grocery, he seems to think it's important to do IVSM. At least I talked him into 3 days rather than 5. I can't handle the ravenous hunger or the extreme anger of 'roid rage. I am hoping three days will keep that to a minimum.

So, I have been on Copaxone since Monday of this week. I'm not going to lie--I hate it. I was on Rebif before, and I can handle those shots, three days a week. But now, every day is ruined by having to give myself a shot--a shot that burns like hell afterwards.

However, it's smart to be on *something* and Copaxone is a class B medicine, instead of class C. It seems less "toxic" than the other MS medicines, should I try to get pregnant. (I wouldn't get pregnant on any MS medicine. The flush time is just not as long, or doesn't *have* to be quiet as long on Copaxone, since it's a different class)

It's strange, because even in a flare, I am not as bad as a lot of people are day to day. Yet, the whole ordeal kind of has me down. I feel gimpy. The accident was humiliating and left me feeling very unattractive. I'm only 29 (almost 30). I'm too young for this.

2008-03-10T14:38:00.000-07:00

Things have been really frustrating lately. I've been extremely tired--sleeping sometimes 10-11 hours a night. If less, then I take a nap for a couple of hours. I am sick with my second infection of the year. However, I can't seem to shake them like a normal person; they have to last for weeks.

Since at least mid-December, I have had tiredness, aches and pains, headaches, feeling like I've been punched in the stomach, etc. I started the new year off with a sinus infection. Then, I now have an upper respiratory infection. I did some digging for information, and a lot of what I am feeling are listed as "possible side effects" of Tysabri. I know that since it is an immuno-suppressant, it can take longer to fight off infections. I think it makes me more apt to get infections, too. Those other things--aches, fatigue, headaches, etc.,--all are very present without any known source.

Today, my neurologist's nurse asked me if I had seen any positive effects to Tysabri. I had to pause, and I said no. Then, I clarified. I know some people claim Tysabri to be a miracle worker, but I just don't buy that--at least for most people. I understand it not as something to make me "get better" but to help me from getting worse. So, the MRI and other long-term, big picture data would be more likely to let me know if it were working. In January, my MRI showed new lesions. However, it was hard to tell if they were really new or from the period of May to October when I was not on Tysabri.

So, I am going to be a bit more vigilant regarding my symptoms. I want to see what is tied to acute infections and what is just an everyday crappy feeling. Frankly, if Tysabri IS causing these aches and pains, the fatigue, headaches, etc., then I'm not sure it's worth it; it's impeding me from doing what I need to do. Those symptoms, whatever the cause, are negatively affecting my life.

Maybe I will take a few minutes every day to just write a general statement in a notebook about how I am feeling. That might help pinpoint the cause of it all. Or at least I will have an answer when the nurse asks me to determine exactly when it started.

2008-02-19T11:07:00.000-08:00

Again, no real updates. Life just keeps going on as normal, for the most part.

At the beginning of the year, I had a nasty sinus infection, and my body just keeps trying to fight something. I would get weird, random fevers, and my glands would swell. Yet, they always go back down. The doctor told me that was the important part, lest I fear I have cancer! Having MS and being on Tysabri just makes being sick and getting better even harder.

I did make a decision about my Ph.D. exams. They just keep getting pushed back. See, originally I was going to take them in December. That was a pretty fast approach, and I realized it wasn't feasible or smart. So, I moved them to March. However, with being sick and tired (dare I say fatigued?), doing what it takes takes me a bit longer.

My advisor said that ideally, I would be studying 8-10 hours every day and 4 hours on the weekend. Um, when I don't get up until 10 am, that ain't happening. And I sleep not because I am lazy and comfortable and warm in bed but because I feel like I need the sleep. So, my neuro wrote me a note saying that due to my MS I need an extension on my exams.

However, the good news comes in that as long as I have them done by the end of summer--August 31--I don't need an extension. Plus, there is no extra charge for the summer term. To me, it seems like "Why not?" Yes, it slows down me being able to get a part time job, start my dissertation, start a family, etc. But I need to care for myself, too.

With all that in mind, I do have to consistently ask myself if I am doing all I am able to do. I know I don't always use my time wisely (hell, I am writing on my blog!) or I get sidetracked with house stuff. There are days when I get migraines when I can't think about reading, let alone processing theology. My husband Brad has been kind enough to "let" me be a full time student, as I pay the bills and buy groceries with only one income. Sure, life would be cushier with 2 incomes, but he understands the importance of me studying. Therefore, I need to be responsible with my time, out of respect for myself and out of respect for him. That sounds terribly old-fashion of me, but more so I mean that being a student is my "job" right now, so I need to do it and do it well. Make sense?

Oh, the latest update on my Tysabri progress is this. I had an MRI in January that showed new lesions. However, my neuro was not able to determine if those were new since starting Tysabri or they were from the lapse between May (my previous MRI) and October (re-starting Tysabri). I am suppose to have another MRI in April to determine if it is being effective. I don't feel any differently, either way. So when people ask, "How are you doing on your medicine," all I can say is "I feel fine." I hate to disappoint, but I have no miracle story. Then again, I don't think I really needed a "miracle."

2007-12-17T08:45:00.000-08:00

I haven't updated in forever. Things are going pretty well, though. Since stopping Tysabri due to insurance reasons (which is STILL under appeals, since May), I am back on it. Even better is that I have new insurance--group coverage--and I pay only $30 for each visit to the doctor. That is WAY better than 20% of $4,668.03! :) I have had three infusions so far. The place I get my infusion--an oncologist's office--is very nice. I sit in a room with a recliner. The nurses are friendly, and I get a lot of reading done. I can't complain.

I've been having some pain lately. Yesterday I woke up and felt crappy, both with a cold and weirdly sensitive spots on my body, ranging from my scalp to my earlobes, to the tops of my arms. I also have been having L'Hermittes Sign for the past month or so, but my neuro doesn't seem concerned.

The thing is, while Tysabri's not a miracle drug, I was under the impression I shouldn't be having any new symptoms. Who knows?!?

Well, that's an update on my end. Nothing exciting, but thought I would post in case anyone checks this anymore.

Happy holidays, everyone!

2007-03-07T14:53:00.000-08:00

Today I went to my neuro to sign the forms for Tysabri. We again went over the risks and the probability of those risks. The risks of PML are 1 in 1000. Allegedly, those are the same risks for MS (though some believe it is more common than that, as people go undiagnosed). My thoughts are, if I have something for which there are 1 in 1000 odds, then I am likely not going to be "lucky" enough to make those odds again. If I am, take me to Vegas baby!

He said I can stop taking Rebarf, er I mean Rebif. That means for now, no more shots. Woot! He is hoping I can start in the next couple of weeks. He said we would do frequent MRIs to monitor lesion activity (which could mean PML, rather than MS in this case). Something I didn't know is that if PML is detected it can turn itself around if the medicine is stopped. I thought you were always screwed--and that isn't always the case, thought it is rapidly progressing and can be difficult to detect. My doctor told me things to watch for, but really, considering my immune system is not modified by other medicines or a disease such as AIDS, I feel confident.

When I told him that my feet were numb and have been for a couple of weeks, he said, "This is why we need to get you on something different." He is not happy at all with how Rebif has been working for me. While my flares haven't been serious there is combined brain lesion activity with physical symptoms. Therefore, it's not keeping everything under control.

Now, I am waiting to coordinate my insurance and other resources to help alleviate the costs. There are programs in place that can help with that. The medicine itself is $2600/month, leaving me to pay over $500. Add to that the cost of the hospital staff and supplies for the infusion and it's a nice chunk of money--one I don't have.

I feel confident, however, that I will be able to work things out. So now, it's just to the waiting.

2007-02-28T18:11:00.001-08:00

Brad and I are walking in the 2007 MS Walk. As most of you know, I was diagnosed with Multiple Sclerosis in April 2006. There is no known cause and no known cure. Because I am hopeful of what the future holds, I want to be an advocate in helping fund research and programs for people with MS.

http://www.msillinois.org/site/TR?px=1570553&pg=personal&fr_id=1140

By following the above link, you can read about MS, how it has affected me personally, and make a donation to sponsor me as I walk in May.

Also, if you are interested in joining my team--Heat Wave--let me know. I'll get more details on that as I get them.

Please consider a donation, no matter how small. Every dollar matters!

Thanks for your consideration!

2007-02-24T07:10:00.000-08:00

I am going to make a request. This is not to be mean or nasty, but simply a request that I hope others will respect.

Please do not link to my blog on other sites, particularly message boards. I don't mind "blog rolls" as it's part of an online community with MS. But please don't send a large group of people my way to observe what I am saying about certain things. Justified or not, it leaves me feeling like a sideshow act. I know that by blogging I am making my thoughts and experiences public. But as a courtesy, please ask before using my posts outside of your personal blog.

I know that there are a lot of issues surrounding MS--treatment decisions, sometimes embarrassing symptoms, the way it affects one's personal and professional life. And I know that by writing on a blog I am putting my own experiences out there. I would just ask that those are not exploited. I write here for personal documentation and support. If it helps others along the way, that's great. And I am glad I have some readers, if I still do that is. I have found the comments I have received encouraging, helpful and supportive. But I hope people are reading and commenting because they are supportive, not because of another motive.

In the past, I have received comments regarding message boards, vitamins and supplements, and the like. I have deleted those comments, because they seemed more like advertisements than anything else.

I am not attempting to personally attack anyone or cause drama. I just ask that my comfort level be respected. Thank you.

2007-02-22T08:28:00.000-08:00

I have a site counter that lets me see who is visiting my blog and how they got here. Recently, I noticed that a rather large number of people who are investors in Elan have made their way over to my blog, and it is largely due to someone who refered them to one of my posts.

I understand that we invest in those things in which we believe. But I also feel a bit deceived. For someone to link my blog to a bunch of Elan investors makes me feel as if my interest is not what you had in mind; it seems as if your pay out was your motivating factor. Regardless of how encouraging and hopeful you are, your words seem a bit less-than-meaningful. It's called conflict of interest. It's kind of like when a doctor prescribes the medicine in which the drug rep gives the best incentives. This is particularly annoying in that I asked some questions that would have let you disclose this particular aspect of your interest, and yet you didn't.

I welcome everyone to read this site. But if your only comments are going to be advertisements for a certain drug in which you have financial interest in, then I would ask you to refrain from those comments. Medical care is more than statistical data. There are other things to consider than the two-year track record. There are emotional costs of considering a new treatment. There are social costs of time lost for infusions and the fear and concern that faces you and friends and family. It's not about statistics. And it's not about money.

End "rant."

2007-02-20T18:51:00.000-08:00

Today, out of the blue, I noticed my pinky toe on my left foot and maybe the toe next to it are numb. This was the first noticeable sign of MS, that I passed off as a pinched nerve. It had gone away, and now it's back.

It's frustrating. It just makes me wonder what the medicine I am on--Rebif--is doing. I have had several distinct, albeit minor, episodes where a symptom appears, such as tingling and numbness, etc. Maybe my neuro is right--Rebif isn't working for me.

I think I have decided to go the Tysabri route, pending I can fund it. I'm pretty go-get-'em so I am optimistic. I need to set up my meeting with the neuro, but need to find a time when Brad can come along, since the neuro said that would be a good idea. I am thinking in the next couple of weeks.

Here's to hoping it ends with a numb toe and doesn't turn into anything else.

2007-02-08T15:58:00.000-08:00

Today, I had my neuro appointment to talk about my MRI. I wanted to be able to see the lesions and talk to him without seeming rushed. I like him a lot, but he's kind of intense, and the phone doesn't help that.

We went through why the CRABs wouldn't work, and I understand that basically if Rebif isn't working, the others likely won't either. I also asked him why he was not suggesting Novantrone, stressing that I wasn't interested, but wanted to be able to answer that question. He was like, "No, no, no! That's toxic! It's chemotherapy!" I understand; I wasn't interested. I just wanted to know why he wasn't interested.

A weird thing is having to consider how long I have to be off a medicine before I have a baby. Brad and I aren't in any position to have a baby now, but I wanted to know the "wash out" period. He suggested three months.

As for a second opinion, I have come to decide it's unnecessary. So, what if doctor #2 disagrees with my current neuro? Then I am stuck with 2 combatting opinions, and why would the new doctor's opinion be so much more valid? Plus, there's the time getting into a new doctor--as a new patient that takes time. It just seems like a hassle and unnecessary.

So, I am going to talk to my husband about Tysabri. The whole risk of PML doesn't scare me, really. I mean, with birth control, there is the risk of blood clots, but I still take them and have for about three years. And while my doctor acknowledges the risks associated with Tysabri, he seems to think they are rare enough; he feels comfortable prescribing the drug.

If I do decide to switch, the next step will be to make an appointment to fill out the paper work and go over the risks. Then, I have to figure out how to afford it, seeing as my insurance requires me to pay the whole cost up front and be reimbursed 80% (I have met my deductible already for the year.) Biogen said that once my application is received, we can talk about options to pay for it, so hopefully there are some resources. Then, of course, there are the hospital costs associated with the infusion. Ugh! I hate this part of the process.

So, that's where I am sitting right now. Just wanted to update you.

2007-01-30T08:53:00.000-08:00

I'm waiting to hear back from my nurse, so I can set up an appointment to go over the results. I called her on Friday. If I don't hear back from her today, I will try tomorrow. I am just terribly busy.

Other than that, I have had headaches three days in a row. I have had to take migraine medicine three days in a row. I tried an Aleve, but it didn't help. The headache only got worse. I am not sure why this is starting up again, after I had gone a couple of weeks without headaches, but it's getting annoying. It may not be MS-related; it could just be stress, but well, I have too much to do to tend to silly headaches.

I forgot to take my steroids yesterday. I put them in my school bag to take once I ate my breakfast and just totally spaced it. So I called the pharmacist to see where in the series I should start. No steroids and still a hungry hippo. Argh. Only a couple more days of them. I'll be glad to have them behind me.

2007-01-27T18:24:00.000-08:00

Do I really have a reader from South Africa reading this thing? If so, awesome. Feel free to identify yourself and say hello--and any other lurkers out there.

I received my MRI CDs in the mail after a long ordeal with the post office, which I am too tired and pissed to rehash. Let's just say, the mail carrier put a card that said "Sorry we missed you" in my mailbox while I was sitting at home. He did not "buzz" me. When I tracked him down for the package, he said he didn't even have it with him; it was at the post office.

I was a bit disappointed in my ability to read the MRI results--both the images and the transcription. After some frustrated attempts, I got the following out of it. The MRI in March had several (innumerable) spots which are mostly gone. There is noticeably decreased activity in those areas. However, there are two new spots (it said small) in the frontal lobe and near the optic nerve. :shrug: If they're small, does it matter? My husband was trying to look at the images and was like, "Wow, they look so much better." I was frustrated because it seemed confusing, in light of what the neuro said. Then again, he is not a neuro and neither am I, which was so evident. My doctor-friend is suppose to interpret the transcription for me. But I also have a plan.

I want to meet with my current neuro to go over the results, so he can show me what on the MRI I am looking at, etc. I am then going to take my results to another doctor to talk about treatment options. Is Tysabri the best/only choice for me? Since I have only tried Rebif and nothing else, is it possible that something else would work? After this second opinion, I am going to meet again with my neuro to discuss where we go next.

I have been having some night sweat issues, at least that is what I think they are. I have no idea if it's related to the steroid taper I am on or what. One night, it felt like I wet the bed--though I didn't! This morning, the sheets were damp. I don't understand. Maybe when/if the nurse calls me on Monday I will try to mention it. I have all of these concerns, so I hope I am not bugging them to pieces.

I had my first headache today in a while. I was waking up with them, but they had gotten better for a couple of weeks. Today's developed mid-day which is rare. An imitrex later, and it is mostly knocked out.

Otherwise, I feel tired and achy. Could just be I need more sleep (we caught a late movie last night--Pan's Labyrinth is great, by the way). Maybe I am stressed--I have papers due by Feb. 1 from last semester. Maybe it's just general fatigue. I really don't know. Hopefully tomorrow I feel better.

2007-01-23T06:15:00.000-08:00

Some updated notes:

The 'roid rage has set in and I am an emotional wreck. I get really angry and cry easily too. I am trying to manage it though. Last night, I slept for about 4 hours, which I had been doing much better (unlike the first time I was on IVSM/taper). I hope this doesn't persist.

I got my Tysabri information in the mail yesterday. Let's just say the info is slim and it's basically what I can access online. The forms cannot be filled out until I am in the doctor's office. I am waiting on my MRIs so I can see another doctor. Yet, I still have lots of questions about why me and Tysabri? I am so "ms-lite" in a sense, particularly compared to those others I know with MS. But perhaps I won't stay MS-lite if I continue to progress. Really, I don't know.
The information that was recently left on Tysabri in my comments section was helpful, but if you read this again, a question--are you just a big fan/advocate for Tysabri or are you employed by the company to promote it? Because you are really enthusiastic about it, which is great that it's working for you. I just don't think there is one miracle drug out there right now. I do appreciate your input, though--let that not be misunderstood!

My neuro called on Friday (I don't think I've written about this yet and I am too lazy to check) saying he was suppose to call me to answer questions I had. Uh, I didn't recall that, but I always have something I can ask. Again, he promoted the Tysabri option as one of my few, if not only, option right now. He seemed pretty certain--not even tentative. On one hand, I am glad he wants to march forward. On the other hand, in the world of MS, I am not sure there is ever such certainty, so such certainty makes me nervous.

I get frustrated with everyone else who just doesn't "get it." I know this is a common issue and I am not alone. I was recently sent an article about how parasites in the water of some third world countries can help combat MS. I have been sent things about aspartame poisoning, supplements that have cured myriads of diseases, and told that if I would have only had more Vitamin B-12 as a child... People who saw me over the holidays have trouble grasping that I seemed fine and why now is the problem reoccurring. Someone else told me that once I started the Rebif, they thought it was all under control and that I would have it behind me. It has been reduced to "eye issues" and "leg issues," etc. I know it's hard to expect people to understand when I, myself, don't fully always get it. But as I live it and experience it, I don't have any real option except to understand or at least try to understand.

I had a bone density test and a hip x-ray just to make sure my bones are holding up in spite of the steroid treatments. I am still waiting for my results, but I don't foresee any problems. These tests were purely preventative and to establish my baseline so I can monitor these things.

That's about all, I think. Just a lot of craziness that seemed to all ball up at once. Fun times, oy.

2007-01-19T04:47:00.000-08:00

Thanks for everyone's concern in what's going on (except Roger's Market--dang comment-marketers!)

I completed 5-days of IVSM (outpatient, going in once a day). I am now on a 10-day taper dose of prednisone. My mood sucks. While I am not the calmest person and can have a temper, I find myself boiling mad--with my husband, drivers, people at the grocery store, etc. I understand this can be a side effect, and I am not using it as an excuse; just trying to manage it. So, I am using my Ativan (usually for anxiety) to manage that.

I don't think I have optic neuritis, per se. But I was having double vision and now feel kind of out-of-focus. I got so frustrated while grocery shopping last night (which doesn't help the mood swings) because to read things was difficult. My husband said the wrong thing to me when I said, "I can't see!" He said, "Then do something about it!" I screamed, "I CAN'T do anything about it." He finally got it, but I think that is what makes it frustrating, that it isn't as simple as going and getting a new RX for my contacts.

As for switching to Tysabri. I know it is a huge decision, one I am not taking lightly. I am having my MRIs mailed to me and will likely see another doctor to look over them. The nurse was encouraging about this, but also warned me that it could become confusing, seeing as I could visit 5 doctors and get 5 opinions.

The risks of Tysabri don't freak me out, really. My questions revolve around how long is Tysabri for? My doc mentioned short-term, maybe a year, but this sounds atypical. How long does it have to flush out of my body before I say...start a family. There's no big rush on that one, but I want to make sure it's not like waiting two more years to even talk about it, after stopping. Also, regarding the other drugs, I want to ask about if the other CRABS would be more effective. I mentioned Copaxone, and was told no, since it's not an interferon (hence, why I thought it might be more fruitful). My understanding is that Avonex and Rebif (which I am on now) are the same interferons, so I don't know how much of a switch we would see.

So, as I said, I have a lot of questions, and it's not like I am starting the big T tomorrow, or next week, for that matter.

Today, I am going to my family doctor to talk about bone density. I don't think I am having any issues, but I know a few people lately whose bones have had adverse reactions to steroids--and not tons and tons of them, but to an IVSM treatment or two. Osteopeania, osteoporosis, and AVN (dead bones). Since I have had steroids twice in 10 months, I want to make sure we are keeping an eye on this.

So, that's all for the update. Today, I am on day two of the prednisone taper. I am trying not to be Miss Piggy, realizing that all the food in the world will not make me feel less hungry. And I have yogurt, apples, strawberries, etc to hopefully help along the way. (But wouldn't pizza taste so much better?!)

Thanks again all.

2007-01-12T14:36:00.000-08:00

My neuro called me today, thankfully. He said that my old lesions look to be cleared up for the most part, whatever that means. I think that means the activity in them has mostly subsided. They aren't perfectly cleared up, but mostly.

The downside is two new lesions that are there--in my frontal lobe and near my optic nerve. I had a bit trouble understanding him as he talks quickly and is from Tunisia so a language barrier/accent is hard to discern over the phone, but this likely is affecting my double vision.

So, he said this is not what we want to see from being on Rebif for 8 months. So, he said he wants me to start on Tysabri. He is mailing me information and then we will sit and talk about it. I assured him I have lots of questions.

About a week ago, I as A-OK. Then BOOM! All of this crap is developing. I had such faith in Rebif. Maybe I am too optimistic?

So, a couple of questions for some of you more seasoned people, or maybe not-so-seasoned people:
1. What questions should I ask him about Tysabri or the potential of me starting Tysabri? I know there is a risk of PML. Any other things I should ask about or consider?

2. How is a lesion on the frontal lobe affecting me? Any info? Or is there a site that says: If you have a lesion on your____ you will be affected with _____. If I read correctly, it might cause cognitive issues? (which since I am a PhD student, I cannot afford this; my brain is my career and one of the few things I have going for me!) Oh, I also see that depending on where in my frontal lobe the lesion is, it be causing motor problems. Maybe this is my foot-drop when I walk and get fatigued or the jumping in my legs? Better that than my brain!

2007-01-09T11:44:00.000-08:00

So, as I've posted yesterday that I have had hypersensitivity and vision issues. The nurse just called me back, and the doctor wants to do IV steroids.

I have only had these once--in April 2006. At that time, I welcomed them. I could barely walk; I'd hobble along, holding onto walls. My balance was also terrible. Compared to that, this seems so minor. I think it's just a different manifestation of MS--perhaps lesions on a different part of the brain. I questioned this, and the nurse said that when she wrote everything out (she read it to me) this is what he suggested.

He also ordered a brain MRI. I asked about a spinal cord MRI, but she said he just wanted one of the brain. He wants to see if Rebif is working for me, as he is considering this the second episode within less than a year (I have been on Rebif since May). If there are new lesions, they mentioned the big T-word--Tysabri. That seems far off and a huge decision to boot.

It's weird how things unfold so quickly. I just wanted to call and let them know things so they could put them in my chart. I didn't expect steroids, an MRI, and discussion of the possibility of Tysabri.

Today is a real reality check. But maybe I am living in denial. I feel overall "good" minus these physical annoyances. All of this medical stuff seems a bit dramatic to me. I'm MS-lite--remember?

2007-01-08T20:12:00.000-08:00

MS is still very new to me. I mean, April will mark one year, but it takes time to see the course of this crazy disease. Heck, I don't know if even long-time MS'ers can know what to expect. Physically, I feel fine. But I am having some weird issues and have a call into my neuro about them.

The big thing is that for three days, I have double vision in the morning. It clears up about 30 minutes to an hour of being awake. But when I look in the mirror, I have four eyes! Once the double vision goes away, my eyes have a bit harder time coming into focus during the day, but I am typically able to see just fine. My skin is also really sensitive. I don't like to be touched. It doesn't hurt like some MS'ers experience. It's just uncomfortable and uber sensitive. My spasticity is acting up, too. My legs jump more frequently and with a bit greater force. Again, it's not excruciating pain, but it has moved from annoying to slightly more uncomfortable. I have these pricks on my side, stomach, legs, and groin area. They often are accompanied by my leg jumping. This happens when I am sitting down or laying down. Something else I have noticed is my left foot drags sometimes, especially when I walk a distance (which I do nearly every day). I have to be very conscious to lift it so that it doesn't catch on the asphalt. Today, I nearly fell. I just feel gimpy, overall.

So I talked to the MS nurse and she assured me that it was okay for me to call. I don't want them to think I am paranoid or just bugging them to death. But since this is new and since MS has a wide range of symptoms, I want to know is this MS or something else? A lot of what I am experiencing could be MS, and the doctor may want to see me. Hopefully the nurse calls me tomorrow to tell me one way or another.

Aside form these annoyances, I feel physically good. I am going to start working out as I am terribly out of shape. I notice this as I am too easily winded when walking several blocks. I like to sleep (like until 10 am on weekends and struggle to get up around 8:45 during the week!). Not sure if I really am needing the rest or if I am just lazy.

Just wanted to update all of you. As I have said before, if you are interested, there is a link in the side bar to my "normal" blog. I try to update it more regularly and it's not just health-related. I try to keep all of the MS stuff on here.

2006-12-19T10:19:00.000-08:00

Someone recently checked in to see if I am doing okay; and I am. I consider myself to be "MS-Lite," meaning I can go for a while ignoring MS--that is until I have to stick myself with a needle. But anyways, things are going really well. I haven't had any real symptoms except for some weakness and unsteadiness the other night when walking quite a bit downtown Chicago. It was kind of a reminder that I do have MS (or am terribly out of shape--or both!).

I told someone that a lot of times, when the MonSter isn't rearing its ugly head I can forget about MS. And when it isn't in the forefront of my mind, I tend to abandon this blog. So, sorry for that.

My husband and I are joining the Y, which should be good for some exercise. I need to lose weight and become, overall, in better shape.

Well, I don't have a lot of news to report. Life is trucking along. Happy Holidays to all of you reading.

2006-11-10T14:05:00.001-08:00

I spent the night in the ER. I was puking and had other stomach issues that shall remain nameless. I also had a fever of almost 102. I was reluctant to go, but the doctor on call suggested it, in fear of dehydration. They gave me 3 bags of IV saline and some medicine to stop vomiting. Unfortunately, the other stomach issues just have to run their course. My white count was high, which means my body is trying to ward off something. The ER doctor asked me if I was feeling any better and if I wanted to be admitted. However, I just didn't think that was necessary. In retrospect, it would be nice to have someone jus take care of me. But hospitals are expensive and that bed could have gone to someone else.

I went to the doctor today for a suggested follow up appointment. I called my advisor to take me, which she gladly did. I felt so bad asking her though as I hate being needy. But I didn't have any cash on me to hop on the train. (We need to keep a 5 in the cabinet for emergency cash situations) The appointment was pointless. Basically, he told me that I just need to stay hydrated and reincorporate mild, solid foods. I haven't eaten anything since lunch yesterday. I have been drinking gatorade, and I have to sip it slowly. But I am SO thirsty--I just want to guzzle it. But I know my stomach probably wouldn't like that.

Being a grown up sucks. When you are a child, your mom takes care of you and babies you when you are sick. She throws out the bag of barf. She would wait with you at the hospital. As an adult--it's all up to you. Brad is at work, so I have been on my own today. I bagged up the barf, putting it on the back porch in a giant bag. I don't think I can talk Brad into taking it out to the dumpster. Brad came back home to sleep while I was at the ER, so he could make it to work today. Though, honestly, that was probably better. I am not sure there was an extra chair in my room, and no TV either. I thought I would be there for two or three hours, rather than six. Still, even though I am a 27-year-old adult, I miss the days of mom.

So, now I am home, and just having to wait for it all to pass. Which I am thankful I am okay, but I hate just having to wait in that icky "trying to get better" phase.

Yes. I am a whiner.

2006-11-06T21:10:00.000-08:00

There are days I can hardly bring myself to give myself my Rebif shot. Seriously, anymore it seems like such a chore. At first, I kind of looked forward to it, simply because it felt like I was taking control. It was the only thing I could do. Now, it just seems tiresome. And I am tired of all the red blotches on my tummy and legs. Lately, they have been itchy, too, which is new for me.

I have been having lots of headaches lately. They make me just need to lay down and shut my eyes. Last week, one made me barf. My doctor gave me Imitrex. I wasn't sure if that was good, since I am also on Effexor. My psychiatrist said to be cautious. My neuro said he felt comfortable with it. I know the risks, but frankly, I am so desperate sometimes for something to make the pain stop. In telling me the symptoms of Serotonin Syndrome, my psych told me that change in body temperature and muscle stiffness were signs. I told him that muscle stiffness is common with MS. He agreed, stressing that i need to be ever-more-cautious.

The numbness in my arm is mostly gone now, thankfully. I am still having some balance issues. Ultimately, I am tired. Now, I am not sluggish and tired during the day, but I do sleep A LOT at night. Today, I slept until 11:15. Last week, I slept past 10 on most days. Is it fatigue? Am I just lazy? I don't know. But I am using the philosophy that if I am able to sleep that long, then my body must need it. *shrug*

Well, I am off to bed. I can't sleep late tomorrow, because I have to work in the mornin'. Fun times.

2006-10-17T12:30:00.000-07:00

Well, it has been a while. And I really should have updated by now, too.

Things are going...okay. In MS-land, I started having some balance issues about a month ago. nothing too severe--I haven't fallen or anything. I called my neuro to keep him posted, and he had me come in. He didn't recommend IVSM (thank goodness) because it seemed pretty minor.

I have now started having some sensory issues in my left side. It started in my left arm. My mom bumped it during church and I realized it felt a bit strange. It has moved into my trunk, down my arm, and somewhat into my leg. I even feel numbness in my ear. Weird. I have a call into the doctor to keep him posted. I really don't want steroids, though. I moreso wanted to chart the progress of the flare ups.

Other than that, I get really tired when I walk a lot. But otherwise, I am okay.

In non-MS land, things are going a bit nuts in various areas of life. It's just too complicated and too private to spell out. But it really is exhausting. I feel the sh** is hitting the fan all at once, and really have no place to spill it. Oh well.

But I am still here. Thanks to mdmhvonpa for checking in on me at my other blog. I tend to write more there--non-MS related. But even my efforts there have been waning.

2006-08-22T15:26:00.000-07:00

I am starting to wonder the extent that my anxiety is linked to MS. I know that people with MS are three times more likely to be depressed, even before diagnosis. Before my first flare up that lead to my diagnosis, I went through a bout of anxiety. Maybe it was coincidental, maybe it's how my MS manifests itself.

For the last few days, I have been feeling quite anxious, which has only been intensified by feeling lonely. It's kind of a vicious cycle. I have also had some slight numbness in my face--nothing deep or major. But especially after crying, my face feels slightly numb.

I got Imitrex for my migraines. I have a call into my psychiatrist to see if it is a good idea for me to take Imitrex and Effexor, since both contain serotonin. I have read about potential risks, though they are unlikely. Though, it does make me wonder if my spike in anxiety is due to the mix of Imitrex and Effexor.

The Rebif nurse stopped by yesterday to check on me. While it was completely unnecessary--things with my meds are going fine--it was nice to feel checked up on. It's an individual approach that you don't get with doctors, which is totally understandable. Still, it's nice.

Well, this has been rather random, but I figured I would check in. To those who are on my blog roll, sorry I have been out of the loop. I will check on you all soon--don't give up on me! :)

2006-08-11T14:34:00.000-07:00

It's been a while since I have updated. Sorry, to those who might care.

I had my 3-month neuro check up. I'm doing much better since I saw him the first time, considering I was then mid-flare up. He did the blood work to check my liver, and in terms of MS, told me not to think about it. He said, "Take the Rebif, and don't think about it." Um...if I am poking myself 3 times a week, I tend to think about it.

He then prescribed me something for migraines--Butalbital. Upon reading about it, I discover it is a barbituate with sedative properties. It can be addictive. It can do a number on your liver (just what I need with Rebif) and can possibly affect the efficacy of birth control.

From what I hear, this is a rather old medicine, and there are newer ones on the market. Upon prescribing it, he said something about we would try this one, and how it is safer. But I didn't know about all of the other things at the time.

I left a message with his nurse this morning, and she never returned my phone call. Nice.

I'm just really frustrated.

2006-07-17T20:29:00.000-07:00

Today, for one of the first times, I felt "handicapped." Because of the hot weather (high 90s with heat index of 107), I decided to drive work/school. I haven't lived through a summer with MS (or knowing I had MS, at least), and I want to be cautious as to not let it get the best of me. I planned on parking in the pay lot since I had to work and had class. Well, there is a summer session going on, and the pay lot was full. So, I was stuck with 2-hour parking. That is fine if I am at work and can move my car. However, I had to skip French. I live 6 blocks from school/work, and I try to take advantage of my mobility while it's here. But in the heat, I thought it would be best to drive.

If I had a handicapped tag, I could have parked. But really, I don't feel handicapped. For the most part, I feel good. On one hand, it is my MS causing me to be cautious of heat exposure. Yet, I feel there are people who are much more in need of handicapped parking. I was just so frustrated because I kind of felt like my MS made me miss out on something I need to do (i.e., go to French class, since I don't understand it at all!) Ugh.

Today, my left hand feels a bit tingly--nothing major, but just a smidge. Also, I have had this strange tingly/squeezing feeling in my head--a feeling I get with headaches. But today, there is no headache, just that strange feeling. And whenever I sit in this chair and get up, I feel stiff, as if I am 80 years old. I don't know why I am making a laundry list of these things--perhaps just to document it so I can go back later and see, "Yes, I was having ___ at that time."

Well, I should get to bed. I have to give myself a shot before I go. Lucky me! (*sarcasm*)

2006-07-16T14:32:00.000-07:00

Yesterday, I got sick. I'll spare you the details (though if you are really curious, visit the link in my sidebar to "my other blog". Let's just say, I am going to carry bags in the car from now on, in case I suddenly get nauseous. My mom reminded me of my last bout with throwing up back in March. It was right in the middle of my first major flare up--I was dizzy and got sick several times within a few hours. Later came the stiffness and serious lack of balance, that has sense passed. Could there be a link between these two episodes and my MS? Or is it just a fluke? It's interesting that now, if anything happens, people automatically ask if it could be my MS. On one hand, it makes sense. MS symptoms span a great deal of things. On the other hand, it's possible that I will still be sick sometimes, completely unrelated to MS. Who knows?

I was thinking yesterday how thankful I am to have insurance. I am glad I am a student that is required to have insurance, because it is quite possible that I would not have been insured during this time--you know, to save money. I am thankful that when I was diagnosed that I had insurance. Granted, I have a $1000 deductible, easily met with an MRI. Yet, the "negotiated rates" that insurance companies and doctors office agree upon are a life saver. I have saved so much money on that, alone. It makes me not be able to imagine what it's like for people without insurance, who have to pay the high face-value sticker price of treatments and medical services.

One thing MS has done to me is it is made me increasingly wary of the whole healthcare system. On one hand, I have been very blessed by some forms of assistance to help get my meds and help with medical bills. However, it's weird to me that healthcare is an industry--it's a capitalistic venture. Prices are negotiated. Doctors tend to prescribe medicines from a drug company who gives them incentives and gifts. Drug companies are trying to come out with new medicines, not because they help people who need them, but because there is money in it. That was a startling reality my MS nurse shared with me--the first company to find a pill that works for MS will jump on it--if only for the money alone. I know that's life, but part of me thinks it's a sick reality too. When for some people things are matters of life and death, mobility or immobility, being free or being confined--why is money the factor? Ugh. I am so jaded by capitalism.

2006-07-13T14:01:00.000-07:00

Today I went for my follow-up with the opthamologist. I told him that since seeing him, I had been diagnosed with MS. He made a notation of it, but he didn't seem too concerned. He said that it had not affected by optic nerve, which is good news. I have to go back in 4 months for a field vision test. I wonder how long I will have to keep going back? The last time it was 6 months between visit; this time 4 months. Thankfully my visits are medical, rather than optical, so my insurance will cover it. (I don't have vision insurance). Though, he considers me pre-glaucoma (I have borderline eye pressure) and now with MS, he wants to keep things in check.

I am really thankful to be where I am right now, in terms of where I am living and the hospital I go to. On all of my bills, there is a statement that says, "____ Hospital has a financial assistance program to assist patients who qualify." Well, I applied for some help with my bills, as I had a $1000 deductible, plus a few other costs above that. I am sure I will incur more charges on my follow up tests, too. The hospital completely cleared me of my bills--they wrote them off, and consider me to be paid in full. On one hand, I feel kind of bad. On the other hand, I submitted our financial records and we did qualify, so I suppose it is to help people like us. We are a young couple--I am a full time grad student and work part time--and my husband works at a popular bakery restaurant while looking for something in the field in which he has a degree. So, surprise--we really don't have a lot of money. Plus, Chicago is pretty dang expensive. I consider the help a blessing, and really, I don't think I should feel ashamed, should I?

Thanks for the advice on the injection-site reactions. I have tried ice and rubbing, which doesn't seem to help. They aren't painful, thankfully, just not pretty. I guess no miniskirts or mid-riff tops for me! (This is even funnier if you really know me!)

I am kind of impressed with the sense of "community" I have found through this journal. The words of encouragement from people I know, but perhaps moreso from the people I have never met is surprising and welcomed. So, thank you.

2006-07-12T14:48:00.000-07:00

I tried taking just one extra strength tylenol with my medicine on Monday. Success. I didn't have a bad headache or anything. Woot!

I DO have these ugly red circles (injection site reactions) where I give my shots. They are usually gone by the time I get back around to that spot. But still, they aren't cute.

Oh well, things are going well. I go back to the eye doctor tomorrow to follow up with him from the issues I was having in February. I think I will be going back to my neurologist in August.

I have been uber tired lately. Not sure if it's related, or if I am just tired. But I took a three hour nap on Monday, and still wanted to sleep more. Ugh! I have too much to do to be this tired.

Well, even still, can't complain.

2006-06-28T17:16:00.000-07:00

A few quick blurbs:

My headache finally went away. I think it was Thursday or Friday? And my fever doesn't seem as big of a deal. I think not having a headache helps. So, I am feeling better and not as sick. I am very tired, but I'll take that over a headache any day.
On Monday, we will be moving to a lower apartment. Right now we live on the 4th floor of a walk up building (no elevator). Since I am feeling good, this hasn't been a big challenge, recently. But during my worst flare up, it was a challenge to go up and down the stairs. This is sort of a precautionary/pre-emptive move. I don't know the course my symptoms will take in the next few years, and when I can barely walk isn't the time to pack/move. As of Monday, we will live on the second floor.
It's good to realize that things have gotten better from when I was at my worst. Most noticeably is that I can stand with my feet together and my eyes closed and maintain my balance, for the most part. Before, I would fall over immediately, so that's good news. Another thing is this--when I was at the doctor, during the diagnosis process, he had me sit on the floor and try to get up, without holding onto anything. I couldn't do it. I had trouble, even holding onto the examination table. Today, I was packing some books, while sitting in the middle of the floor. I had no problem getting up. It's good to see how far I have come.

2006-06-22T17:43:00.000-07:00

Ugh. I feel like crap. I celebrated the end of my headache too soon. I have had a headache for about 3 1/2 days, minus about 10 hours or so. My eyeballs hurt from this headache, too. My shoulders are achy, and I have around a 99.3 fever, which is higher than usual. Perhaps these are the "flu like symptoms" I thought I was being lucky enough to avoid. I just can't seem to shake the headache, and when I get a headache, I am cranky. My poor husband!

In response to Jamie's comment about picking either tylenol or ibuprofen...I checked on this. It's okay to mix, precisely because they are different. It allows for more pain relief, without overdoing one. However, at this stage, neither ibuprofen or tylenol are helping my headache.

Sorry for the whiny post.

2006-06-21T19:29:00.000-07:00

Woot! My headache finally went away after three blasted days, and for that, I am thankful.

2006-06-19T18:56:00.000-07:00

So, I am up to the full 44 mcg of Rebif. I gave my first "full" injection on Friday, and I was kind of nervous about additional side effects I may have, i.e., worse flu-like symptoms. But I took 2 tylenol with it (I had only been taking one, then some ibuprofen the next morning, if needed), and I really felt okay. Today I do have a headache, which I always wonder if it is MS, because I feel like it's in my brain--like my brain is squeezing or something. It's really hard to explain, and how I do explain it may not be accurate.

Tonight, my husband and I were joking around. I said, "I should make an MS mix CD, and on it, would be Boy George's song 'I Tumble for You.'" I was laughing so hard, I could hardly make it up the stairs. Really, I thought it was funny.

I'm doing really well. My emotions have been weird lately, though that may just be "life." I have been tired--enjoying my sleep more than ever, but that is to be expected for anyone when it is so hot outside. The heat takes a lot out of you.

A couple people have been reading this lately, and for that, thanks! While I ultimately write for myself, it's nice to know that it's not all in vain. I may not be super faithful with my updates, but keep checking back.

2006-06-15T19:50:00.000-07:00

Tonight I went to a seminar on MS and the treatments that are coming in the future. On one hand, I thought it might be helpful to see the other faces of MS. That is, until I saw them. There were lots of people in wheelchairs and on scooters. The lady next to us had trouble talking and could barely pick up a spoon. Hopefully these people are that "bad" because they are the earlier faces--they went years without treatment. But I don't know for sure. There are lots of possibilities for the future--oral meds, a vaccine that tricks your body to thinking you don't have MS, etc. It was interesting.

I asked the doctor about a couple of things. One, I asked him if it was okay that I never had a spinal tap. Some people try to question my diagnosis because I haven't had one, but my MRI and symptoms were conclusive. The doctor at the seminar said that was perfectly acceptable. Also, today I received an email from a classmate about aspartame poisoning. The email was in Spanish, but I was able to understand it--plus I did a google search. However, there is no evidence suggesting there is a link or even a false association between MS and aspartame. The doctor confirmed this.

I get so tired of people who want to second guess this thing. It's one thing to be gullible, but it's another thing to be informed and trust the doctors who specialize in treating MS. For me, a constant stage of second guessing just leaves me in-between--never fully accepting or claiming this as my own. For me, I just want to move forward.

It's weird to hear MS called "a chronic debilitating disease." I have never thought of it like that; I don't want to think of it like that.

One interesting fact I heard tonight: Depression is three times more common in people with MS, even before they are ever diagnosed. Perhaps my bout with depression in January of 2005 was symptomatic of MS?

2006-05-24T14:31:00.000-07:00

Well, I have given myself one shot by myself--two in total. The one with the nurse, as I said, wasn't bad. The one I gave by myself was less-than-comfortable. It wasn't horrible, but I think I was holding back, as I had a smidge trouble getting the needle to go in my leg. And I forgot to let go--to stop pinching. I have a little red spot known as a "site reaction" that is pretty common. It doesn't hurt. It's just pink.

I am totally freaked out by the biohazard symbol. Maybe it's from going to hospitals a lot as a child, as my father was in and out of hospitals. There is something about them that totally freaks me out, and I hate when they put chairs underneath them in hospital rooms. I always move the chair. Well now, I have to have a little container like that to put my needles in. It has one of the spooky symbols that looks evil. Ugh. As if stabbing myself with a needle is not anxiety-inducing enough, I then get to have one of my top fears all around me. Ugh. Seriously, this may sound dramatic, but I have never ever liked biohazard symbols. So, I am convinced this is some cruel joke from God.

My hands are still numb--kind of tingly. I can use them just fine, but I don't have full sensation in them. Other than that, I am doing well...walking well, standing well, etc.

People remark about how well I am doing with this emotionally. My therapist seems to think I am internalizing the emotional piece of it all. My friend thinks I am, too. But really, other than those first couple of days, I have been doing fine. I am kind of too busy to sit and dwell on it. And lots of people have MS, and lots of people do just fine with it. Part of me wonders if I should be more worried or concerned than I am. Should I be? I don't know. But for me, it is just about taking the medicine and hoping for the best. What else is there to feel?

2006-05-20T11:01:00.000-07:00

Yesterday was my visit with the field nurse affiliated with the medicine I am taking. She told me all about the medicine, what it can and cannot do, the side effects, and then she showed me how to do an injection. I practiced on a faux-flesh pad thing, and then practiced with the auto-injector. Then, the big moment came to do it to myself. It didn't hurt at all. Now, I have plenty of fat on my tummy to inject into, and the needle is really thin, but I was surprised. I didn't even feel a sting. Now, maybe I had too much adrenaline going through my body; maybe next time will be different. But so far so good.

There are 8 different places on my body I can inject--actually 4, both sides of my body makes it 8. They are: my stomach, my thigh, the back of my arm, and the top of my butt/hip. The stomach and thigh seem like no problem; the others seem a bit trickier.

In a sense, the injections made it more "real." Yes, I was on steroids, but this is the first thing I have done that is specifically for MS. I'm totally okay with it; it just was more real, if that makes sense.

My counselor seems surprised that I am not emotional about this. People at my parents church are like, "How are you??" with concerned looks on their faces. I respond, "I'm good, how are you?" I mean, seriously, it's what life has handed to me, and there is nothing I can do except take the proper medicine. It's possible that I have been so much in planning mode (dealing with insurance, trying to get funding for meds, etc) that I have been unable to "feel" it yet. Or maybe when I have a new flare up of symptoms, I will break down. But so far, I am okay--minus the first couple of days where I cried a lot.

So, that's the update. Thanks for asking Gina :)

2006-05-18T07:02:00.000-07:00

I received my medicine in the mail today. It came in a cooler with ice packs to keep it cold. The box of medicine itself is small, containing 12 syringes. It's hard to believe that little box is worth $1500+. Thankfully, it's only costing me $50, but still--that's a valuable little box.

The nurse comes tomorrow. I am a bit nervous about giving myself shots. I am not a huge fan of needles (who is?), but I don't like to think that I could be giving myself shots three times a week for the rest of my life. But it's good to know that I am getting the best medicine available on the market.

2006-05-17T12:13:00.000-07:00

Friday morning, a nurse with the MS Lifelines program will be coming to my apartment to teach me how to do my injections for the medicine. On that day, I will give myself my first injection.

Honestly, I am a bit nervous about poking myself with needles three times a week. I am kind of a wuss. But I am sure it will get easier with time. Plus, since injections are the only options for slowing down progression, I will do what I have to do. Also, there are side effects that people often experience for the first few months. The main side effect is "flu like symptoms" including a low-grade fever, chills, aches, etc. Am I the only person to whom this doesn't sound like fun? Hopefully with the tylenol regimine (I will take 6 total on the days of the injections), the side effects will be kept to a minimum. Another common side effect is injection site irritation--redness, swelling, tenderness. Once again, doesn't sound like fun. Less frequently people experience depression/anxiety. As you may know, I am already on medication for that. So, hopefully that helps, and hopefully I don't have to raise my dosage.

Oh well. It is just a blessing to be able to get this medicine. I am thankful that the drug company has programs for people with crappy insurance, or people who don't have oodles of money.

2006-05-16T11:34:00.000-07:00

I haven't updated for a while. So here is what's new:

The big news is that I heard today from the drug company, and I was accepted into the patient assistance program. That means I get my medicine for $50/month, compared to $300+/month it was going to cost. Also, I don't have to pay the whole cost upfront and wait reimbursement. This is very good news. My first shipment will arrive Thursday morning, and a nurse will be contacting me to teach me how to do injections. Yes, giving myself shots makes me a bit nervous, but I suppose one perk to being fat is that I have extra cushioning.
After an assertive phone call to Blue Cross/Blue Shield yesterday, I finally got them to process my claims. They had processed some, but there were some from back in February that they hadn't processed, including my opthamologist appointment. So, after demanding to speak to a manager, my issue was resolved in about 17 hours. I spoke to them at 3 last night, and by 8:30 this morning, they had been processed. Makes me wonder what the delay was.
My right hand is going a bit numb. This is similar to how my hands were back in late November. I have called the nurse and let her know. Hopefully it gets better as it did then. I have also been having headaches, which may/may not be attributed to MS. They can be, but it's usually rare. Other possible causes could be the horribly rainy weather or the immense amount of stress I am currently under.
I am not as hungry all the time as I was with the steroids. Thankfully that side effect seems to have subsided, and now I need to get rid of the 10 pounds I picked up along the way. I am still experiencing some funky hormone action. The steroids made me skip my period (yes, I am sure I am not prego), and ever since I started back up on my birth control pills, my body is not sure what it wants to do on any given day. Maybe this is why my emotions are so haywire.

That's all I can think of for now.

2006-04-26T19:06:00.000-07:00

This article is interesting. MS may be linked to the Epstein-Barr Virus (EPV). About three years ago, I had mono, which is a member of the EPV. Who knows? Maybe that's what triggered it?

2006-04-23T20:24:00.000-07:00

I have been racking my brain as to how the quote Walgreen's gave me yesterday could be accurate. Then, today, when I went to Target to get my birth c0ntrol filled, they also charged me full price. I am thinking that maybe Blue Cross doesn't have me in the computer as meeting my deductible yet. I just met it on Thursday, or something. So, let's hope.

If the medicine is $700/month, there will be no way. Seriously, no way. However, if I can get it down to about half that, I will try my hardest. I am sure we waste a lot of money going out to eat or on stupid stuff. Not sure exactly how much, but if we basically don't do anything that costs extra money, maybe, just maybe, we can find a way. I am not trying to sound pitiful, but I just really want this medicine. I mean, it slows the progression of MS. Without it, my progression rate is unknown. It's too early to tell how it is progressing on its own.

Today was kind of a bit unsettling. My equilibrium has been off all day. I haven't fallen, but I have kind of swayed and have been unsteady. I noticed it as I was drying my hair and as I was in the store.

A bit of a vent: today, someone asked Brad if we had come up with a plan, yet. Okay, we just found out on Friday that the medicine was THIS much. Most offices are closed throughout the weekend. So, what would that plan be? Sure, we have been thinking--at least I have. I have a few different avenues I plan on looking into. But why would someone be inclined to think that we have come up with a magical solution. There isn't a magical solution that I know of. So if you do know one--please share. Also, I think this person doesn't realize that all of the medicine is expensive. Yes, from what I know, Rebif tends to be "the best." However, it's not that I am just whining because I want the best medicine and can't have it. They all cost $1500 and upwards, and Rebif is the only to work in all three areas. Therefore, it's not as if I want the $2000 medicine, when there is an alternative for $100. It's just not that easy, kids.

And the steroids...I feel like I have a tape worm. By that, I mean, I am hungry all the time. I eat, and I am still starving. I have eaten fruit, but my body wants things that aren't nearly as good for me--like french fries and nachos. I want salty goodness. I ate 3/4 of a row of saltine crackers tonight. I need to watch it, or I will balloon up. But I am hungry, and not just a little. As in, even when I am sitting here working, all I can feel is my empty-feeling tummy.

I don't think anyone reads this. If they do, fine. If not, fine. But I am sure my counselor will be asking me what I have been thinking, and this is a way for me to look back and remember. In the meantime, if anyone is curious about what's been going on, they can know, too. But this is in no way an attention ploy.

2006-04-21T12:47:00.000-07:00

Edit: I just got a call from the program through the drug company today. Actually, I got two--one verifying my insurance info and one telling me my benefit eligibility. The medicine is more expensive than I thought--twice as much. It's over $3500 month, which leaves me 20% portion being over $700/month. But because I have POS (point of sale, allegedly...more like piece of shit) prescription coverage, I have to pay the WHOLE amount up front and wait to be reimbursed. I don't have $3500 laying around anywhere--not even on a credit card. And even if I did, I cannot afford $700 month for medicine. Who can afford that? I wish I knew what I knew now when choosing insurance. And when it comes time to switch, I can't switch because all of this would be uncovered as a pre-existing condition. Ridiculous! It's such a trap.

I received a large envelope in the mail from my doctor's office, containing information about Rebif, the medicine I will be trying. I also received a call from the MS Lifelines department--the section of the drug company that works at getting people medication. Anyway, I have just looked through the information, and a new sense of reality has set in.

One thing that strikes me is the following quote: "None of the ABCR agents (the disease-modifying drugs) will make you feel better or return abilities that you once had. You will not feel it working. You take an immunomodulator in hopes of having fewer/milder flare-ups in order to try and delay the progression of the disease. The ABCR agents do not stop flare-ups." Sure, slower progression is great. But will I be able to feel my legs fully? Or my abdomen fully? Will I get to play tennis? Or will I get to wear sandals. I know these things sound so minor, but still.

But they did send me a pen and a little messenger bag in the mail. So, it is all worth it. ha!

2006-04-18T15:37:00.000-07:00

Today I had my last round of steroid infusion. Now, I start 18 days of an oral tapered dose. I have to make sure I remember to take them. I am not use to taking medicine in the morning.

I mentioned to the nurse today that I wish she were there yesterday. Today's nurse was the one who did my first IV, and it went smoothly. She is also very nice and not irritating. I mentioned that the nurse yesterday just bugged me; she had a story (personal story) for everything. She even shared that her son was recovering from a horrible car accident and having surgeries, etc. Not to sound completely uncaring, but I really didn't care. Today's nurse is the managing nurse, which I didn't know. She thanked me for telling her and was irritated with the other nurse. I felt bad--I was just kind of venting. But she seemed like this wasn't overly new news.

I am still so hot and sweaty. I feel like I am dying, and it's only in the 60s today. I also feel so smelly. It's wretched.

In good news, people have noticed I am moving around better. I hope that it continues, even after I go on the oral steroids. I also need to check back in with my doctor, to see when I have to go back.

One last vent: insurance companies SUCK. I am waiting around for them to start processing these blasted claims so I can meet my deductible and start having them pay 80/20, which still leaves me owing a heck of a lot. But it will come from somewhere. Afterall, you can't get blood out of a turnip. And if you're my nurse yesterday, you couldn't get blood out of someone, even with really easy-to-find veins. Bleh.

2006-04-17T18:38:00.000-07:00

As of Friday, I was noting a big difference in my legs. I was feeling slightly more, but the movement was greatly improved. Unfortunately, by Saturday night, I stiffened back up. Sunday, I was in the shower. I had just shaved and I slipped a bit. However, since my equilibrium is off, I was unable to regain my footing. I fell, taking the shower curtain down with me. My mom rushed into the bathroom, and there I am, bare naked trying to get up. It was humiliating on so many levels. I thought I just fell gracefully, but I have ginormous bruise on my butt--bright purple, too. If it weren't on my butt, I'd take pictures, but alas it is.

Today, I went for my next to last dose of steroids. They put in a new IV, and the nurse was making me nervous. I told her she gets one chance to find the vein, and she said I was making her nervous. Her nervous? She has the needle. I have the veins. She was unsuccessful the first time, and then ended up putting the IV in the top of my hand. She just didn't seem as exeperienced. She didn't cover the needle opening with gauze; she just taped it. So now, the clear tape shows the IV sticking out of my hand. There is also remnants of blood in the tube. I am hoping when I flush it out tonight it goes away. Ick.

There is something that has been irritating me. Some people, particularly who those in the field of psychotherapy for example, remark how hard MS is to diagnose. Sometimes their comments include the disclaimer that "MS is so hard to diagnose," and "If it's MS..." That's great and all, but my neurologist specializes in MS. After looking at my MRI and hearing my history of symptoms, plus doing some sensory tests in his office, seems pretty dang sure. On one hand, I know people want to be hopeful. On the other hand, I am sick of people being wishy washy, trying to make it something else. Being uncertain or in flux does not help me one bit. Let's trust the doctors and move forward. THAT'S what I need.

In case you're curious, the steroids have some side effects. They make me retain water. I noticed I had gained a few pounds just over the weekend. I peed several times last night, during the night, and the weight had come off. Water weight. The steroids make me hot, so I am sweltering right now. This makes me think I smell bad--like BO. And showers and deodorant only do so much. My tummy feels bloated and I get heartburn. I have been taking Tylenol PM to help me sleep.

Today has been a struggle for me with anxiety. On one hand, I know steroids can cause depression, particularly if you go off of them immediately. I am on 1000mg for three days, and then I had a two day break. Could my body be reacting to the shift? Once the infusions stop, I will go on oral steroids to help my body adjust. Maybe the anxiety is not related to this. But I woke up with a panic attack, and I have had them throughout the day. I feel like I am gasping for breath. Maybe it's just all that is going on in my body. I have steroids, then no steroids, then more steroids. I have Effexor for anxiety. Birth control hormones coarsing through my veins. Add this to the natural psychological stress of illness, school, and life. We might as well call the men in white jackets.

2006-04-13T17:32:00.000-07:00

Today was a bit better. The stairs were a bit easier than they have been for a couple of weeks. Could the steroids be working? If so, praise the Lord.

Last night, I drank water with lemon. I thought, "Wow...it's bitter!" Tonight, the same thing. I realized it's from the steroids. During injection, I get a bitter taste at the back of my mouth. Today, I asked for something to combat it (I am paying enough for these injections, the least they can do is give me a can of Sierra Mist!) It helped, but still, the bitterness is lingering. Water doesn't cut it--so maybe some orange juice or my beloved Pepsi One will do the trick.

I have been awake for 15 hours, and it is only 7:30. Maybe I will crash peacefully tonight.

2006-04-13T07:51:00.000-07:00

I found out that my blood work came back okay, for the most part. My ANA (testing for auto-immune disease) and lyme disease test came back okay. My chest x-ray was "unremarkable," which in this case is a good thing. Just think...for once I want to be unremarkable. Go figure. My Westergren Sediment test was a bit high, which the nurse said meant there is inflamation somewhere, likely. When I asked about the inflamation in my central nervous system causing this exacerbation (flare up) she said that wasn't likely. When I looked it up, high levels can be caused from anything from kidney disease, severe anemia, or pregnancy. (I'm pretty dang sure I am not prego!) However, the nurse said that normal range is 0-20 and mine is 25, which isn't high enough to cause alarm. That's good.

On one hand, it would be nice to have this NOT be MS. On the other hand, I am just ready to know and move forward. So, in once sense, I am thankful that the blood work didn't raise any new flags.

Last night I ate chili, and it upset my stomach so much from the steroids. And I have been up since 4:15 this morning. I might try some benadryl.

2006-04-12T13:34:00.000-07:00

So I've started posting here for me...no one else but me. I am reluctant to talk about this with the blog world, because I don't want it to seem like I am letting MS define me. I am not like "Hi. My name is Heather and I have MS." At the same time, this is a big deal. It has affected various areas of my life. I have been to more doctors and the hospital more times than I have in years combined.

Today, I started the steroid infusion. I sat in a hospital room for over an hour while they prepped the IV and did the 250cc of steroid drip. It was boring, but I did watch some MTV's "My Super Sweet Sixteen." A high price to pay for cable. I now have an IV with a cap on it, sticking out of my arm. I am wearing a net over it, which looks very much like the 1980s Madonna style. I need it to go up like a glove without fingers. And white is not nearly as badass as black, it will do.

I know this is the start of a journey. I am not painting it out to be doom and gloom. Sure, there will be challenges, but life can be very full, still. Still, there are things that I think about...little things--things I never thought about before. They are:

I hope I get the feeling back in my legs. I want to play tennis, and I hate to think what life would be like never playing tennis.
I am making arrangements to move to the first floor, which is one floor up. With flare ups--good days and bad days--I just don't know what strength, balance and energy I will have.
I have to consciously think about what shoes I will wear. Wearing sandals, like slide on sandals, just don't work. Since I can't feel my feet, my sandal doesn't stay on, and my foot pushes it's way to the top so that my toes hang over the edge.
The everyday tasks of grocery shopping and running errands is exhausting.
People make jokes about canes and scooter carts. I laugh. But inside, I feel a bit strange, because I know if it progresses much further, I may need some help to keep me steady. But I am 26 dangit, and will walk as long as I can.

The uncertainty--not knowing if it's progressive, if it will go into remission, etc--is annoying. Even today as I sat through the IV drip, I kept trying to see if I could feel anything more in my feet. But I am sure it's too early to tell.