(I'm watching my Tivo'd episode of this week's American Idol elimination or whatever it's called.)
A little over a week ago I woke up in the middle of the night with sharp pain in my lungs. It scared me. After a few hours I fell back asleep. The next day, I was struggling. I had a shortness of breath, and sharp pain when I breathed in. It seemed like whatever was going on, it was triggering MS - deadly fatigue, weakness, eyesight, weird sensations - the usual. I can tolerate everything but the weakness and fatigue. Monday morning I dragged myself to an urgent care clinic. I was hoping they could give me an antibiotic for what seemed like an infection in my lungs. After myriad tests, she diagnosed pleurisy but said no antibiotic - it's a viral infection.
Well shit! Most of the infections I've had over the years that trigger MS for me have responded to antibiotics. It felt weird to not know if there was an end in sight. I stayed home from work for a few days. I had to go in and do evaluations for my staff before the deadline. Trying to do the math was amusing. When MS is acting up, my cognitive skills go pret-ty far out the window. Math is extremely hard, as is speaking, reading, writing, thinking, driving - I feel like it must be like what Adrian feels like with his dyslexia.
MS is insidious. For 6 days, I felt like I was dying, in the sense that I would never again have energy. Getting up to brush my teeth is an ordeal. I can't seem to remember that I ever did have energy. It is like night and day. The worst part is not being able to remember what it is like to be Energetic! trrish. I don't believe she'll ever come back. I think it scares my kids and some people at work. There is a critical part of "me" missing. It just isn't there. And I don't know any way to find it. It's more than energy - it's like life force. My friend Art told me that the first time he saw it happen, it was scary. But that now he knows that I come back, so it isn't as scary. That was helpful for me to hear.
Intellectually, I know that the infection will subside and MS will recede. But in the moment, I can't imagine it or remember what it might feel like.
Back in 2002, I had a particularly freaky episode where I went numb from my shoulders to my mid-thighs. It started one day as a numb spot in my abdomen, then every day grew and grew like a curse in a Stephen King novel. That one had me freaked and they suggested I go in for IV steroids. I did them each day for I think 5 days. The steroids, I believe, bring down the inflammation in the body and speed up the resolution of the episode.
In my case, the consequences of the steroids were rough. My face and body were painfully bloated, I could barely sleep - like I was all sped up or something. I don't remember what else bothered me about it. But, the numbness began to recede. I remember saying to myself that I did not want to do them again. See, the problem with me is I don't like doing drugs. I really don't. They complicate things, they have side effects and they throw me off base much of the time. If you have MS, it would seem that an aversion to drugs would be a good thing to get over. I've used antidepressants for years. I've gone off them numerous times, only to find out that I'm better off back on them. I'm sure I'll continue to try to get off of them.
Something I also used in some episodes was a drug called Provigil. Provigil is an interesting drug that I think was first used by the military. Provigil can lessen fatigue - it feels a little like a whole bunch of caffeine, 'only different'. I used it for a while. Something made me back off of it, and I absolutely cannot remember what it was. I still have a few pills. I thought about them earlier this week, but I was very reluctant to take one.
The pain was starting to slightly diminish and change Thursday morning. I got up and noticed that I could walk to the bathroom without feeling like I had used every last ounce of my breath.
Was I coming back?
By Friday, I could feel that the mysterious life force was coming back. The life force that MS seems to take away. Today, I watched a DVD of a Who concert and had so much passion for it I knew I was on my way back to myself. Amazing. I've had this go on for months, so if it sticks, this is very good news.
I'd say that since my diagnosis, I've had an average of a few episodes - of quite varying lengths - each year. I first noticed symptoms about 4 years before the dx. It's been going on for about 13 or 14 years, at least. For quite a while longer than that I had depression and fatigue but I've got no idea if it was MS-related. I don't remember having other MS symptoms at that time.
Sometime Wednesday, I called and made an appointment with the MS clinic in Denver that I go to when I get desperate. Dr. John Corboy.
It's funny how I ended up with him. I started out with Neurologist 1 in Longmont, Colorado. I could not take him seriously. He did my lumbar puncture. I had the dreaded spinal headache for days afterward, and had to do the patch because the only relief for a spinal headache is lying flat on your back. I actually attended a meeting at work lying on the floor! After two days I screamed uncle! and went in for the patch, which was its own little horror show. He helped diagnose me, along with my primary physician at the time. I'll always remember the day my pp called me. "Trish, good news and bad news. The good news is, you're right - your intuitive skills are very good - the bad news, you're right - you do appear to have MS." I had first gone to see him and said "I think I have MS. Here's why" and presented my case. He agreed with me and agreed to do all the appropriate tests, with the exception of the LP, which he sent me to Neuro 1.
Anyway, I thought Neurologist 1 was a slacker neurologist - he told me I shouldn't worry about taking medication until I got worse. I wanted to get a second opinion so I went to Neurologist 2 in Boulder. I started out asking her if she thought I really did have MS. After going over all my history she said "well dear, I don't think there's any doubt that you have MS". She recommended Copaxone.
Strangely, a few days later I got a wrong number call at my house. "This is John Corboy's office - did you call trying to make an appointment?" I said, "who's John Corboy". She said "Dr. Corboy is a research neurologist who specializes in Multiple Sclerosis". Ok. I said to her, well that's weird- I have just been diagnosed with MS, but no, I didn't call." She said "Well, you should come in - Dr. Corboy is a great dr.!" I always kind of wonder now if maybe neurologists buy lists of people recently diagnosed with MS - kind of like recruiting at a major university :-). Either that or it was the hand of God.
A few months later, I started losing faith in Neurologist 2. I can't even remember why. I think she was reluctant to work with me on trying other things. I made an appointment with Corboy.
I have a lot of respect for him, yet I have not always followed his advice. I was on Copaxone self-injections for 5 months or so. Then I would stop because I couldn't tolerate the daily injections. My abdomen was a bumpy, bruisy mess. At the time I didn't have enough flab on my arms and so I could only inject in my abdomen and my thighs. You needed another person to poke you in the butt, and I wasn't up to asking Ozzie to do it at that time. I would go off and then back on. But I kept having episodes, and he decided it was not working well enough for me. I wanted to try Rebif. Rebif wasn't a 7 day a week injection - only 3 or 4 a week. And allegedly didn't have the "wasp sting" effect afterwards.
He warned me that Rebif would likely be too life-threatening for me with my history of depression. I found another doctor (Neurologist 4?) who would give it to me. Corboy was right. Within two weeks, I was suicidally depressed. I tried it twice, same thing happened both times. I went back to JC (reference intended.) I went to a talk he gave on MS, and afterward told him he had been right and that I was coming back with my tail between my legs. He said "we're always here for you when you want to come back." So, I get the feeling I'm not the only MS patient who"drops out" occasionally.
Corboy recommended Novantrone - chemo for MS people. I took some deep breaths and tried it. (But first, I did get my tattoo, some enhancements, and toured around with The Who for the summer. This stuff was starting to scare the crap out of me.) Didn't like it because it lowered my white blood cells or something so I developed a raging bladder infection. That's just death for me (see above). I had exhausted all the MS drugs except one that Rebif was a derivative of, so I stopped going. I pursued other methods of self-care. I skipped out for several years- about three, I think. I had concluded that the treatments were as bad as the disease.
A year ago, I went back, no doubt after an episode, in to find out if I would qualify for the new wonder drug, Tysabri. A day before my appointment they pulled it from the shelves. I went in anyway. They encouraged me to get set up for it in case it came back relatively soon. I chickened out. There had been one or two deaths (as a result of combining with another drug) and I just didn't want to take on the risk. I skipped out for another year.
So on Monday I'm going back.
(By the way, this is my first season ever watching American Idol and I think I'm in love with Simon Cowell.)
I'm going to go in and see if they are willing to prescribe Tysabri, to see if I can afford Tysabri (it's $23,000 a year if insurance doesn't cover it) and do whatever needs to be done. My wonderful friend Scotti is coming with me! Scotti is a surviver of melanoma and I love having her by my side at things like this. She came with the first time I went to see JC.
I'm going to follow through this time and take it as far as it goes - whether it ends up with Tysabri or not. I really need to talk to them about how I can manage these episodes that get triggered by respiratory infections. I've done a great job of managing the bladder infections, but I can't handle these respiratory things. I had 4 in a row this winter!
(Jennifer Lopez is a pretty good ad for women with slightly larger hips and thighs. She gives me confidence. I don't really know her music, but I like her body type. I thought she did a good job in 'Out of Sight'.)
I want to give a shout out to two people who have visited my blog and have inspired me to have the courage to go and at least talk about the Tysabri - Lauren and Courtney.
(Yeah, I'm ok with Haley leaving. Although, I think a few of the guys are fairly equal to her. I don't get the fuss over Blake and Chris. At this point, it's not that bad to get kicked off. You get to go on tour!)
I started reading about the side effects of Tysabri. They don't sound great, but it seems like the likelihood of having them are way smaller than with the previous drugs. It's giving me pause for thought. Two of them are depression and infections! That would suck.
Well, this last episode has shown me a few things. I don't want to feel like that if there is any way I don't have to. I know that I can't be perfect on the self-care stuff - I will never maintain a "perfect" diet for years at a time. I will go through phases of yoga and exercise, and no yoga and exercise. If there is a drug that can help with minimal tradeoffs, maybe it's the right thing. Going in when this is all fresh in my mind is definitely a good idea.
("Drama on A Saturday Night" is a Neil Innes song. Neil's a British comedian and musician and has done a lot of work with Eric Idle, including "The Rutles". I really like him. Check out his song videos on YouTube.)