Friday, February 13, 2015

Rebound, Tysabri, LP, MRI’s, Solu Cortef, IVIG

I have been relapsing so bad for… I am not even sure how long. It feels like forever. I mostly cannot see or coordinate my hands/arms all of which makes tying quite an endeavor. In fact, to do anything on my own is a huge feat right now; even typing the few words you have read so far is a strenuous task.

Double vision, blurred vision, ataxia, fine motor issues, dizziness, vertigo, trouble walking, loss of depth perception, the list goes on. I don’t have to say it to make it known that it’s miserable. But I have bounced back from much worse (obviously) but this is not a normal relapse. “Immune Reconstitution” or as most people call it, a rebound. My immune system has been suppressed and since I was not on the medication suppressing my boiling water (for 3 months) my immune system was allowed to build pressure that finally exploded (once the lid keeping in the boiling water in this pot of a body was unlatched). A lot of “pressure” released; a lot of collateral damage.

I have been resting; lying in bed watching TV and loosing my mind. I forgot how this all felt: I forgot what it was like to wake up every morning hoping that it would finally be the day I can see. Since I moved back to California I have been trying to get in to see my overbooked neurologist. When I started “relapsing” I drove to his office and he saw me that day. He was so mad; my insurance kept denying my medications and the tests he wanted to run. After some angry phone calls (some of which I witnessed) everything was magically approved.

I got my prescriptions and came in a day later for my Tysabri along with some Solu Cortef (since my doctor did not want me waiting even a day for them to deliver Acthar). Solu Cortef is a steroid like Solu Medrol but somehow different. I am not sure how but it is and it took about 15 minutes to infuse; it’s a one time deal. The next day I had an LP/spinal tap. I lied flat and drank water nonstop for almost 2 days and guess what? No headache!

Now I am waiting for these symptoms to clear up so I can get back to life. I am also waiting to have my MRIs and my IVIG appointments scheduled. Maybe I will be able to start school next semester since I didn’t really make this one. Mostly I want my independence back. I can barely make it 15 feet (5 meters) to the bathroom without falling. I can hardly see which obviously means no driving. Luckily the vertigo seems to be gone but I still feel sick if I move my head too fast. I am still dizzy as well. My depth perception is a tad better; if I try to place something at the edge of the table it usually does not fall to the ground now, usually. I still go crazy every time I hit two keys on the keyboard or look up at the screen after typing a word to see that all the letters are wrong; I was typing with my hands shifted either left or right while thinking they were centered.

It’s so hard to watch all the action movies I have been watching when my body is falling apart. I wish I could do what those actors do to achieve those bodies…. I wish I could focus on building myself like that but instead I have to focus on not breaking down. UGH!

Still, this is a good reminder of everything I am taking for granted. I have not relapsed in over 2 years and during that time what have I done? Not as much as I could have.

Tuesday, February 3, 2015

Once again I find myself waking up every morning hoping that I will be able to sit up and see straight. Nope. Still dizzy. Still some minor double vision, which is making getting around so difficult. I can hardly type as I keep hitting the wrong keys!

I called my neurology office yesterday to see if the approval for my Tysabri was still pending. Everything was; Tysabri, Acthar NRIs, LP, everything my doctor ordered but now there is a note. DENIED BY INSURANCE.

Next I called my insurance, well, my father had to help me because the numbers on my insurance card were too small for me to read. They said they don't have all the information they need and that I had to call my doctor’s office to tell them to call my insurance. Don’t you love being stuck in the middle? Why could they not just call my doctor’s office and tell them what they needed? I guess that would just make too much sense…

So I called my doctor’s office and added a few more holes to my “Time Spent on Hold” punch card; 2 more and I get a free additional 15 minutes of waiting on hold while listening to classical music (over the sound of static) by America’s least favorite composers of the 17th century! After I talked to them Biogen called me to try to enlist me in another program that would help me with the costs of the actual infusion, which I wanted. After half an hour on hold the operator asked if I wanted to continue holding until a representative was available or have them call me back. I was struggling to keep my eyes open so I opted for a call back. I took some Benadryl and Klonopin and I knocked out for the remainder of the day. Sleep is the one way to really escape this double vision.

I think I may have mentioned this already but I have been using my cane here and there. It’s a bit depressing to see myself going backwards. When I am in the kitchen I can hold on to the counters to get around but in other places there is nothing to grab on to so I need my cane to keep me balanced. If I start feeling the handle press into my hand more than usual, then I know I am leaning into it. If I feel the pressure of the handle on my hand growing weaker I know I am leaning away from it. Stairs are fun; I usually take a few steps and end up on a knee and a hand. I am really trying to not go up or down unless it’s absolutely necessary.

1 more month and I enter “rebound territory”, that is, usually after 4 months without Tysabri, those who did well on it have a rebound, not a relapse. It’s like a withdrawal from the medication where you have the worst relapse ever and the disease activity increases by about 3 times including the number of lesions you have. I have been trying to get Tysabri and Acthar since December (before I even moved back to SoCal) and come to find out it’s my damn insurance that is doing this to me! Don’t you love it when your life is dictated by paperwork that you have no control over?

I have no idea what I will do if I get into the 4-month realm… Especially because next week we are suppose to me in the mid 80’s (27’s C) while everyone on Facebook is posting pictures of the FEET (30cm +/-) of snow they are waking up to. I miss it so much (the cold weather). I want to build a styrofoam insulation box with a portable A/C in it within my room so I can survive the summer. I’ll take as many online classes as I can so I don’t have to go out in the 110F (43C) degrees average temperature the “summer” will bring. Once I graduate I can save up, look for a job back in Colorado and move back with a better foundation.

I have a reliable car, I want 10 grand in a savings account for emergencies and so I can fly back to see my SoCal neurologist whenever I need; I know what to plan for now. Time to do it right. I just can’t wait to pay off all my medical debt so I can really feel like I am moving to start a new life with a clean slate. I didn’t do it right last time; it was an act of desperation and though it showed me what I want it bit be in the ass because I was far from prepared.

Anyways, wish me some sort of recovery (I would say speedy but I have realistic expectations here haha), this sucks (duh) and I am going to miss this semester of school, which I really wanted to attend. Oh well. When the time is right I suppose.

  •  Double Vision (closing one eye doesn’t help)
  • Vertigo
  •  Poor Balance
  • Weakness
  • Extreme Fatigue
  • Minor Cognitive Impairment
  • Difficulty Coordinating (mostly fingers)

Saturday, January 31, 2015

I’m Relapsing; Can Hardly See or Walk

I am going to be short and to the point. I am in a bad mood and don’t feel like writing or doing anything really.

The last few days have not gone well for me. I was dizzy but not enough to get in my way. I pushed through it, in fact, I could still drive. But come yesterday I rapidly started falling apart. I woke up really dizzy. Even when I was not moving (as before the dizziness only struck when I moved around too fast) the world was spinning. This made walking really hard. I kept stumbling over and towards the end of the day I had to dig out my cane from my storage.

I feel helpless again; I forgot the feeling.

Today has been the same although part of me feels like it is getting a tad better. Too soon to say… we will see tomorrow. But it set of a chain reaction of events that have left me angry, depressed, full of resentment, and as always, stubbornly wanting to overcome everything despite how tired I am in life.

I have such a headache from sleeping in. I'm dizzy, somewhat nauseated, in a bad mood and I am having trouble walking. I want my Acthar and I want my Tysabri. It pisses me off that my health is paying the price for my insurance company dragging their feet to most likely determined how to make this a more profitable situation for them. Money…

I just want to stabilize my life.

Tuesday, January 27, 2015

FINALLY; A Small Step Forward

I got the process of switching back to my neurologist going back in December, I moved back to California, have had several minor relapses (still having one now) and nothing happened. I called often; nothing. I finally ran out of my prescriptions and I was making due without my Ritalin (for energy), by drinking too much coffee and still wanting to sleep come 7pm, but when I ran out of Klonopin it was too much. The noise was making my life hell and my chest was constantly hurting, like a heavy pressure on my sternum that hit every time someone put a metal fork down on a glass plate. It was making me a very negative person. So yesterday I just drove down to my neurologist’s office to talk to people face to face. I was not leaving without a prescription.

I showed up and (since everyone knows me) the scheduler asked me “is everything ok?” to which I replied, “Well, not really. I am relapsing right this second. I am out of meds and that is making me feel worse. I need to know what is going on here. I am falling apart.” She immediately pulled me up on her computer to start investigating and started making calls to try to see why I am still pending in the system. No answers. So she walked to my neurologist’s office, got my unsigned prescriptions I had called about 4 days prior, found my neurologist, and had him sign. She told him I am relapsing right now and he said he wanted to see me; like an appointment…. That day! She asked if I could come back in a while so they could fit me in. I said yes (of coarse).

I went to the pharmacy, filled my prescriptions, and while I was waiting for them I tried to find a ride to that appointment. I was not feeling so great. So dizzy! No luck so I went home. I had some time to kill. I fell asleep on the couch for a while, I needed the rest to build the energy to drive back to the clinic during rush hour. I got there 20 minutes early as always but the nurse announced that he was running about 40 minutes behind. That’s typical and I am patient so it was no big deal. 40 minutes is nothing compared to 8 hours in the ER or on a cramped up plane.

The appointment went well, he confirmed everything I suspected and he got me all set up. He is ordering MRI’s, a spinal tap, Acthar, and he personally called to see what was going on with my Tysabri. “Hey man, what’s going on with patient X, Y and Z? apparently the mother ship has to actually call to get things moving” he said while I hoped he knew the guy (haha).

I was happy to get my prescription but an actual appointment that very day and my neurologist personally making calls to get my Tysabri going because “you called this in back in December, that’s bull-s**t”. Plus knowing I have some MRI’s and a spinal tap on the way to finally see what is really going on with this JC positive crap? That’s good. I don’t feel as hopelessly lost as I did before. I’m still falling behind on bills since I can’t work but that is not as important as my health; money and credit can be fixed but health issues like MS can cause permanent damage, which I don’t want. That’s a* major reason I left the life I was building in Colorado to come back to the “wonderful weather” of SoCal…

So as of now I can survive next month financially but after that I am screwed. Taxes? Screwed. But I am trying not to stress over something I can’t really change. Hopefully I will get my tax returns soon so I can file and hurry up and get financial aid for school. Otherwise? Well… I am in big trouble… Not thinking about it… I just want my Tysabri so I can go back to work and NOT fall apart. I need my legs and don’t fancy being dizzy/weak.

One step at a time.

Thursday, January 22, 2015

I am SO Fatigued!

OK, not much new to share. I talked to my neurologist’s office yesterday and they are still waiting on some authorization stuff for my Tysabri. I did ask for some refills on some medication that I am about out of. They are under my doctor’s name in Colorado so they would technically be new prescriptions. The Klonopin I am not worried about but my neurologist doesn’t like to prescribe Ritalin, which I understand, but I have tried so many other things with no luck. Ritalin really did work and obviously I did not become addicted to it.

I am just so fatigued. It’s been bad the last few weeks but today especially; I woke up not even 3 hours ago and already feel like lying down! I have been living on coffee and it’s really not doing anything anymore. I either need an espresso machine or a way to infuse it via an IV! I have Nuvigil still but the reason I have so much left over is the side effects I get were just not worth it; jumpy/jittery and a racing heart. Not to mention popping a pill is like playing Russian Roulette only instead of a possible bullet I risk a possible migraine.

I am not sure what to do, I feel so unproductive, lazy, I just don’t want to do anything because all I have to do is computer work and sitting in front of the computer does not help me wake up. It’s depressing! I need to be active but there is nothing to do out here! Even sitting here and writing this is… well… I can’t think of what I am writing mid sentence and it took so much energy to even write this tiny post. I need something to help this because if I can’t get anything but Nuvigil I am screwed for school!