Tuesday, March 29, 2011

This is NOT a death sentence!

It's been a long month, but I promise to update as fast as possible! I've been very sick with an upper respiratory infection and double ear infections. On top of that, we had to put my cat down, so I've been very bummed and missing her. In between all of those, I'm still trying to find a job for next year.

I'm on spring break this week (reminder: I'm a teacher), so I have lots of doctors appointments scheduled. Yesterday, I drove into the city (about an hour away) to see the neurologist. She thinks my pain levels are getting much better, I've gotten through the rebound headaches (FINALLY!) and the headaches are still there but less severe than they were. She said she felt like my eyes were doing better, but that I still needed to keep the neuro-opth. appt today (I'll get there next). She is going to double my dose of amitriptyline / elavil (used for pain). I also mentioned that I'm not positive that I'm allergic to Sulfa and she recommended I see my PCP to see if there is a test for it or if she's willing to monitor me more closely to see if I'm allergic or not. Things would obviously be much less complicated if I don't. I also mentioned that I've been losing a ton of hair lately, to the point that it completely stops the water in the shower from flowing down the drain. It seems to be coming out in clumps (no missing patches however). I asked if it could be related and she felt it was not, so I'm going to go see my PCP about that as well and see if I've got a thyroid issue going on.

This morning, I went to the podiatrist because my plantar fasciitis that I have had for three years is not getting any better, just worse. I spoke with him about me losing insurance and we both agreed that it's time for me to have surgery, so I go back again in two weeks for a check up and we will schedule a surgery date at that time.

After that appointment, I raced back downtown to see the neuro-opth. Had my visual fields test done and it was better today than it was last month. Odd, but good news nonetheless. When he looked in my eyes, he said that they were "98% better" than they were when he first saw me. WOOHOO! More good news! And then instead of seeing him next month, he doesn't want to see me for 2-3 months. He said "I know I don't have to worry about you. You know how to get a hold of me if you feel there is a problem, you know the warning signs, and you're on medication that should regulate this from now on. There's no reason for me to see you as often." It felt great to hear that.

One more visit this week--on Friday. I'll see the PCP to see about the Sulfa allergy and see if I've got some thyroid issues going on, but overall, I do feel much much better.

I just have to say......This is NOT a death sentence. My life is not over and darn it, I will not stand by and let this disease get the best of me.

Tuesday, March 8, 2011

Can I sail through the changing ocean tides?

Took my love and I took it down
Climbed a mountain and I turned around
And I saw my reflection in the snow covered hills
Well, the landslide brought me down

Oh, mirror in the sky, what is love?
Can the child within my heart rise above?
Can I sail through the changing ocean tides?
Can I handle the seasons of my life?

Well, I've been afraid of changin'
'Cause I've built my life around you
But time makes bolder, children get older
I'm getting older too, well

Well, I've been afraid of changin'
'Cause I've built my life around you
But time makes bolder, children get older
I'm getting older too, well, I'm getting older too

So take this love and take it down
Yeah, and if you climb a mountain and you turn around
And if you see my reflection in the snow covered hills
Well, the landslide brought down

And if you see my reflection in the snow covered hills
Well maybe, well maybe, well maybe
The landslide will bring you down

Yes, yes, I did steal those lyrics, but they truly sum up how I'm feeling right now. I feel as though my life is in shambles and it seems to all come down to one thing--my illness.

Went to the neuro-opthalmologist about a week ago. My eyes are improving. The way that I understood him (but who knows because he doesn't know how to break down the medical jargon for me!) was that I still have papilledema but that it's much better. He wanted to see me in two months and I wouldn't agree to that--I'll be back there in three weeks for another visit and visual fields test. However, this visit frustrated me to no end. It's nice to know that my eyes are getting better, but they did not seem concerned about my double vision at all. The doctor told me that if it happens when I'm driving to just close one eye. How comforting! Also, if my pressure is getting better, which we saw by the lower numbers in the tap that it is, why are my headaches getting worse? Why are they getting completely unbearable. I thought they were bad before and now they seem atleast five times worse. I wonder if they can get even worse than they are now. I'm worried that if we can't get the pain under control soon that it will get much worse and really be debilitating. Which leads me to....the day prior to my NO visit, I found out that I lost my job. I don't know how soon I will lose my health insurance and it's very frightening. I am going to break my lease or buy out of it and move in with my parents to in the long run help save money and it'll be nice to have the extra support on my bad days, but they obviously can't provide me with health insurance. I don't know what I will end up doing. Back to the pain that I am having....I had to call my neuro on Friday. I hate calling her to bug her since I know she is busy and working at two different offices and has her own life to deal with, but I had to have her paged. I'm sure in time, I will feel more comfortable speaking up for my needs, but I have never been one to feel comfortable asking for help or inconveniencing someone else. I have always tried to put others first and it kills me now that I have to try to put myself first at times. Where was I? Ugh. Uhm.....now I have to go re-read and try to figure it out. Oh....the phone call. Anyways, I told her that I've been having trouble going in to work because of the pain and now lost my job and all of that. She is trying me on a new medication to try and reduce the pain because the fioricet doesn't seem to be working anymore as my headaches are getting much more severe. The new medication is called Elavil. It's typically used as an anti-depressant but I guess is supposed to help relieve migraines. I'm not really sure how it'll work, so we will have to wait a few days and see how it goes. My thought though is that pseudotumor headaches are majorly different than migraines. To me, it's like comparing a broken leg to tendonitis, yes they both hurt, but are not the same pain nor do they have the same cause but yes we call them leg pains, right? I don't know, but hey, if it works, I'll be happy. At this point, I'm willing to try just about anything to avoid having a shunt.

Can I sail through the changing ocean tides?
I don't know, but I'm sure as hell going to try!