Sunday, December 25, 2011

an inconvienent doctor's appointment

Nothing says Merry Christmas like a trip to the ER. Made the trip on Christmas Eve. After putting off calling the on call neurologist all day I finally called and she told me to go get it checked out at the ER. After a few more hours of procrastinating I finally when to the ER. I was using all kinds of delay tactics to keep from going. First I just need to wrap presents and eat lunch then eating lunch turned into eating dinner...

The doctor wanted me to get checked out because it could have been a reaction to the Gilenya or a new MS symptom. It wasn't really an emergency but more of an inconvienent doctor's appointment. My vision was a blurry and I kept having trouble focusing. It was also making me feel kinda dizzy. This all had started on Friday and it hadn't gone away when i took my migraine medication. 

The ER doctor was kinda a jerk. I know I wasn't a true emergency case but he could have been a little more respectful. I'm pretty sure he thought I was high. When he started his exam he wanted me to open my eyes and my response was to open my mouth. I was sitting there for a few seconds with my mouth open before I was like oh my eyes and figured it out. 

My blood pressure was really high when I went in. After spending a few hours in the ER I started feeling better. My vision and blood pressure were better so I left. It doesn't look like it was macular edema or optic neuritis. Not really sure what it was or why it got better but we found out that it didn't seem like it was serious. I'm supposed to follow up with my othamologist on Monday or Tuesday to make sure it isn't macular edema. I'm going to keep take the Gilenya until we know more. 

What a great start to the holiday celebrations. It was kinda a waste of time but I guess it's better that I got it checked out. As long as the inconvienent doctor visits don't become a holiday tradition I think I can deal with it. Merry Christmas everyone. 

Thursday, December 22, 2011

Please stay on the line

This post was actually around Thanksgiving but I apparently never posted it so here it is now.



The wheelchair fitting was a lie. It was actually supposed to be next week but it was put on the calendar wrong. Not that it really matters because this appears like it is just going to be another thing the insurance company wants to jerk me around on. This situation is further complicated since we are since switching insurance companies. Right now I have to wait for an opening to try to get fitted this year.

I have a wheelchair that is on loan from a friend. I want to get a lightweight one because when I'm having a flare up a regular wheelchair is too heavy for me to lift on my own. I can do it but it takes 5 minutes of pushing to get it in the car and then I'm exhausted and have to wait a while before I can drive. This doesn't seem like it is very helpful. I also need more of a custom chair because I have long legs. On most chairs my feet/legs don't fit and my feet drag on the ground or hit the front wheels. Who would have thought that wheelchairs are designed for short old ladies or people too fat to walk? So I need something special and I guess I'll just stay on the phone until that happens.

You know what might be the worse part about having a chronic medical condition? Spending so much time on the phone talking to insurance companies and doctors and everyone else. I can usually tolerate the physical symptoms but I can't stand talking on the phone. I don't think it would be so bad if over half the call wasn't spent being on hold. Hold music really isn't that bad, it is much preferable to the company announcements. Do they ever update their menus? Im pretty sure it is just a trick to delay from reaching an actual human. I spend on average about four hours a day on the phone. Dealing with my MS would be so much easier if people could actually be competent at their jobs but since that is probably too much to ask for, I just wish I didn't have spend as much time on the phone.

Post Observation

The observation day ended up going pretty well. The last reading of my blood pressure and pulse had dropped a little more then the doctor liked so I was given IV fluids. I dropped just over 20 beats. I started the day with a slightly high blood pressure and pulse and ended up a little below average. I was given the fluids because of the drops and I felt a little lightheaded. I think I was feeling that way because I didn't sleep well the night before, like at all. So I have learned that I need to take a sleeping pill everyday I'm on steroids even if I feel tired because otherwise I won't sleep. I have not been very good at taking my oral steroids on a regular schedule this time around and I have been having some big swings between feeling great and horrible. This also makes it harder to sleep if I take the steroids a little late since it winds me up.

The doctor told me to take it easy and rest today. Drink lots of fluid to make sure my blood pressure and pulse don't drop more. Unfortunately, taking it easy doesn't mesh well with the whole preparing for hosting Christmas thing. Oh well I'm taking it easy today and I guess I'll worry get everything done tomorrow.

Apparently some people have been missing the funny pictures and whatnot on my blog lately. Hopefully these links will help make up for that.
Underwater Ink
Exploding Ornaments
Vader Christmas Choir

Wednesday, December 21, 2011

Starting Gilenya

Chilling at the doctor's office right now for my Gilenya observation. So far no problems. Then again the only problem has been getting the medicine. Still not totally sure what coverage the new insurance company is provide and can't find out til the 1st. I'm supposed to get 3 months free from the patient assistance program but that could change to just this year or a month. A lot is still up in the air but since I'm starting this year I should be able to have continued coverage...in theory. 

I suppose I should clarify that my appeal to the insurance company was denied. They refuse to cover any of the cost of Gilenya. My drug rep basically doesn't know what she is doing and had me waiting for answers that we already had. I still haven't received the paperwork she was supposed to send like two weeks ago. So the delay sucked (sucks) but I'm working on getting a new rep now. I'm taking Gilenya now because My Judy got me the hookup. 

I'm also going through another flare up right now but it seems like the lesions are currently affecting my brain. I did 3 days of IV steroids and now I'm on a week of oral steroids. This makes my 5th flare up. I know that relapse is a more correct term but I hate using it because it makes me feel like I messed up like I fell off the wagon or something. When talking to the doctor last week, we confirmed that my first flare up at Thanksgiving 2009. This is on top of the 3 potential other flares. I'm really hoping that the Gilenya helps lower this. If Gileyna doesn't turn out to be the magic pill for me then in 6 months to a year we will consider a different drug. The goal is get down to zero flare ups.

Not sure what caused my jaw pain but it's pretty much gone now because of the steroids. I haven't had any more migraines since I started them either. I still get a little vertigo but it isn't as bad or frequent so I'll take it.

Woohoo only a few hours left to go of this observation. Once I'm done here I only have one more appointment and then I don't have any for awhile. I could use a break from doctors. I had like 8 appointments last week and 6 this week. So many doctors. I have to schedule some appointments yet for the new year but they should only be about twice a week so that isn't too bad.

Friday, December 16, 2011

What a day

Yesterday was a bit of an odd day. I sent the whole day at the doctor office, well actually two. Physical therapy went well and then started the phone tag portion of the day. My Judy called and told my to call my Gilenya rep to start the patient assistance program application. So I called the Gileyna rep and we basically went over everything we talked about last week again. It didn't seem like she did anything since then. Then she said that we didn't qualify for the patient assistance even though earlier in the week she said it would go through. I was pretty frustrated but rocking out to Run DMC helped. Turns out that I started signing along out loud a bit. This older guy was kinda laughing at me until I pulled out my headphones and then he started singing and dancing along with me. Nothing like karaoke in the hospital lobby.
It wasn't quite this desperate looking. We were way cooler grooving the lobby.
The Gileyna lady was using the wrong numbers to see if we qualified. With the correct numbers I do qualify for the patient assistance. Hooray because there is no way we can afford to pay over $50,000 a year for one medication. She said she would send me the paperwork that she said she would send last week. No clue why she didn't send it already but whatever.

Jon picked me up for lunch and dropped me off at my neurologist. The doctor had a cancellation so my appointment got bumped up (this really worked out in my fortune). I have been suffering from daily migraines, vertigo and some other weird new symptoms. One of the new symptoms is jaw pain. It maybe a sign of TN (Trigeminal Neuralgia) or it could just be too much tension in my head. Or something?

My vertigo was so bad that I couldn't do all his tests. We aren't totally sure if I'm having another flare up or if pushing it too much is triggering my migraines and that is prompting MS symptoms but a course of steroids should calm whatever is going on down. It is a good thing I was hanging around early because otherwise I won't have been able to start steroids today, fill a prescription, set up all my future appointments or work on the Gilenya mess with Judy.

I think My Judy deserves a Dundee
My Judy is amazing. She worked her magic and got me the forms I need to start Gilenya. I'm still waiting on the paperwork from the drug company from 2 weeks ago. Not only that but she got "samples" to cover me until they ship my drugs. No clue how she did this because they definitely don't give out samples but I don't care how it happened. I start Gilenya next week!! My Judy needs an award.

My day started out frustrating but ended out a high note. I wish I could have started the medication sooner but I'm so happy to be able to start it this year.

Monday, December 12, 2011

Good-ish News

I have a little bit of good news. My request to have my student loans deferred so I don't have to worry about starting to pay those back for at least 6 months.  And I got approved for life insurance. We managed to get the paperwork in before my heart condition and MS diagnoses were officially in the system so they don't count as prior conditions that would disqualify me.

And I am driving again, sometimes. I only drive when my right foot and head aren't bothering for short distances during the day where there isn't traffic. But it is a start and it is nice to have some independence back. We went to the holiday get together for the MS group and we all went around saying what we were thankfully for and that's what I said I was thankfully for. Everyone started applauding for me. I don't really get it because I don't feel like I did anything but I suppose it is an accomplishment. It was nice to talk to people there but it was also kinda hard because in the last month 6 people have started Gileyna and I'm not one of them :(. Last month most people hadn't even heard of that drug and now it seems like everyone is on it.

If only I could get some good news on starting Gileyna... There are some issues confirming that my appeal and not just the doctor's appeal was denied. Its a mess but I'm trying not to worry about it until I see my neuro on Thursday.



Tuesday, December 6, 2011

Thanksgiving recap

It's been a whirlwind since thanksgiving. We hosted thanksgiving for the first time. I'm very glad that most of the food was catered because their was no way we would have been able to host a full meal. It was small and pretty relaxed even still I think I pushed it too hard. Turns out the thanksgiving is a lot of work. Thanks mom and grandma for hosting all the other thanksgivings in my life. Overall I think everything went well. 

The day after thanksgiving we went on a road trip. We have been meaning to visit a friend in Maryland for months now but for numerous reasons the trip kept getting delayed. We were not sure if we would be able to make this trip until a few days before. We spent a few days in Baltimore visiting and then we headed to Washington DC for two nights. It was a good trip and I'm really glad we went but I think I may have pushed it a little too hard. I think the hubby might be a little worn out from pushing me up Capital Hill and all the driving. It was nice to get away.

I wasn't able to escape completely mentally from the BS of dealing with MS. The first day of the trip I got a phone call from my Judy. I call her my Judy because I don't really know what her job is. She is a nurse or physician assistant or something like that. Anyways she is my Judy and she is super helpfully. She called to let my know that the insurance company called and was asking the doctor about my appeal. He verified what I had written and they thought that the call had gone well. So for the rest of the trip I kept anxiously checking my email to see if the doctor had heard anything. 

When we got home there was a letter from the insurance company saying that Gilenya wasn't medically necessary since I have not taken two other medications prior. I don't think they read my letter at all. I felt pretty frustrated and defeated. I'm still glad that I waited and did the appeal because otherwise I would have been wondering what if and that would have driven my a little more insane.

I called the Gileyna program people to tell them about the denial and inquire about patient assistance to see if we could afford the medication without insurance. Today I got a message back from them saying that Humana hadn't informed them of the denial and that it was still processing (as of yesterday). They think that the insurance is reviewing their decision again. I don't think they really know what's going on. Don't get me wrong the trip wasn't overshadowed by this news or anything it was just unfortunate to have to come back from vacation mode to bad news and more hassle.