Dermatologist

Today I saw a Dermatologist for the first time in about five years.

For almost two months I have been extremely broken out. When I was a younger teen, I had severe acne. So when I say I have been extremely broken out, I don't mean I've had a few more blemishes than normal. I mean it is from my shoulders all the way down my back. It's up my neck. It's pretty much everywhere.

I went to see the campus doctor July 28th for my acne and he put me on antibiotics. My Rhuem. specialist put me on my emergency drugs long-term while this is dealt with, since I can't be on autoimmune suppressants and antibiotics at once. I've been on prednisone ever since.

About a week ago I went in again because I've got these little bumps that are definitely not acne on my arm. I was afraid there was another infection going on along with the acne. The campus doctor referred me to the local dermatologist.

Basically here's what he did:

• He prescribed me like 4 skin washing things. I have to shower twice daily.
  
• He named the little bumps, but I don't remember what he called them. Hopefully I'll find out tomorrow after I pick up the paperwork.
  
• I've also got these bruise-like colorings on my legs, but they aren't bruises. He thinks these are side effects of being on prednisone.
• I had him look at my damaged toe, which is really, really bad right now. It looks like the nail is about to break at the bottom. He said to watch it closely, keep it trimmed, but not to remove it right now.
  

Unrelated to this: Lately I've experienced pain in my arms. It's happened off and on over the last month. The pain is similar to the early stages of RA in my thumb - I bend/stretch my arm, and unbearable pain floods up my arm to my shoulder and burns. The pain has been so severe that I've stood gripping my arm and crying out quietly. Afterwards, the arm feels fevered/hot inside for about a half hour to an hour, depending on the severity of the original pain. The pain feels like it's in my muscle, but I remember that with my thumb I thought the muscle was the effected part, too.

I'm not sure if this is because of my syrinx, RA, or something totally different. Praying that it won't get any worse, because it's already starting to interfere with what I can lift, pull, or move.

The Up-Coming Doctor Events:

• Early Sept: I see my Rhuem, Endo, and all-around doctors
• Later Sept: Follow up with campus doctor
• Early Oct: Follow up with dermatologist
• Mid Oct: Full-body MRI
• Nov: Follow-up with nuerologist.
  

This Week in Symptoms...

Recording this here because my medical tracking calender doesn't have enough space on it.

Thurs., the 9th - I am really swollen, so I start prednisone. This helps cut the inflammation and brings back my appetite, which had totally disappeared after the nerves of moving.

Fri., the 10th - I am feeling great all day. I get groceries. I carry them up - no problem. But I have to carry up two cases of six pack water bottles later. I lift them and think, I can't do this. This is too heavy. I shove that notion aside and try my stubborn positive thinking methods, repeating to myself, I will do this. I will be fine. There are some guys milling around the stairs to my dorm room. I almost ask them to help--my hands are really hurting now--but I chicken out. I drop the stuff by the stairs anyway and no one helps. I pick it up again with a hard time and start up the stairs. I am crying by the top because my hands feel like they are going to break. I get inside with some trouble and dump the stuff on the floor. My left arm goes completely numb and I have trouble lifting it. That arm/hand begins shaking very badly. I lie down and rest, waiting for it to pass. It is numb to the touch. I can move it, but when I do it feels disconnected from my body - like I am moving it through a cloud, or like I am watching it move but not feeling the movement. The feelings eventually pass, and by the next morning it looks a little swollen but it works fine.

Sat., the 11th - My damaged right big toe hurts after going on a walk in my running shoes.

Sun, the 12th - I wake up with my left thumb hurting badly. Over the day the pain recedes. In the evening, I begin to feel unconsciously uncomfortable. Finally I am flexing my hand and the act of straightening my fingers sends shots of extreme pain up my arm. I notice then that my hands have begun to swell and my right fingers are very agitated. I can't think of why this is happening since I am on pred. I check the air conditioning, and someone had upped it to 77. That's the only reason I can think that I am so swollen.

RA in the Working Environment

I really, really have struggled this week with figuring out how I am going to have a job with my Rhuematoid problems. The first day at Admissions, I had to do some heavy lifting. It was okay the first time, but by the second time I was gasping in pain when I put down the box. I do not really know how to explain it to a co-worker or supervisor, because I do not want to look like I am trying to throw the hard work on someone else. I hate looking or feeling weak. But the truth is I've already had at least three times where I've just been trying to open my door and I cannot get it to work and I'm nearly crying with frustration.

Because of all that, I started on my emergency medication two days ago. It has cut the inflammation enough that I feel sort of comfortable again, and it has helped bring my appetite back. I have been feeling less exhausted and more confident with it. Of course, in another week or two I will have to go off it again... but hopefully Humira will help that transition, and/or I will have a better idea of what I can and can't do and what I should or shouldn't say.

Description of the HUMIRA Shot

I thought I'd write this, mostly for friends/family who want to know why taking the shot makes me cry normally.

When you take the HUMIRA shot, it is automatic so someone clicks the button and the needle shoots into you. It stays in there for ten seconds and then pulls itself out.

Imagine that when the shot is clicked, someone hits you with a baseball bat in the stomach. The baseball bat dissolves into burning poison acid and thrusts itself into your middle. It keeps pushing into you, burning and stinging everywhere. Even that's not an accurate description... It is like a chemical burn, not a heat burn. And the stinging is like being stabbed, not like a little, "Oh, my foot fell asleep and now it tickles!"

Finally the shot yanks out of you but the pain is still there. The spot hurts without anything touching it, but it hurts really, really bad if anything comes in contact with it. For about a half hour it continues to hurt on and off. It still is tender that night.

There you go.

Eye Doctor

Saw the ophthalmologist a few days ago. My mom was worried I was losing my color vision, but we did all the tests and everything's normal. I do need to get a new prescription of glasses sometime... Not sure when I'll get that done.

Humira and Methotrexate

I started Humira two weeks ago. The shot is very painful - it burns pretty bad. So far the one time I tried to give it to myself, I yanked it out as soon as it started injecting. Laura has been doing it for me so far. I'm hoping I can ask a nurse to do it at Berry, at least until I get more used to the feeling.

Today I went in and got another shot in preparation for Methotrexate. I spoke with my Rheumatologist, and he says that as I up my dose (every week it goes up until I'm taking six pills once a week) I'll probably start feeling sick. Mom says that her friend who's on it plans a day of the week where she doesn't do anything, and that's her sick Methotrexate day. I'm trying to figure out how I can work this while working part time and doing college work. I was going to do it on a Saturday, but then if I wanted to hang out or if I was going somewhere for the weekend I'd be pretty useless. I guess I'll have to see how my schedule comes out.

My doctor said that if I get sick and it persists, it wouldn't hurt to call/come in. If I'm running a fever, I should definitely come in. I was wondering about that, since all these drugs are messing with my immune system.

So far I'm feeling better, though not perfect.

The Neurologist: Second Round

Today I met again with my neurologist. This was mostly a follow-up, and it went very fast.

Basically: He doesn't know what's going on. He thinks it could be the syrinx causing my tremors, or it could be a side effect from one of my medicines, or it could be something else. But because of all the other junk going on, he doesn't want to give me medication that could possibly do nothing but add more side effects.

He does not think it is a result of my autoimmune system attacking my nervous system, because something would have shown up on my MRI if that was going on.

He wants me to do what the neurosurgeon said and return in October for another MRI. From there we'll see if the syrinx is bigger or smaller or the same. If my symptoms get worse, or I start having heat/chills, confusion or numbness when I have the tremors, I'm supposed to go in immediately. When/if it gets worse, I'll talk about having the surgery - until then, I should be able to cope without it.

Rhuem. Appointment and General Doctor

Yesterday I saw my Rhuematologist and my all-around doctor. I saw my general doctor first, and asked her about getting a drug I need before I go on the chemo drug. She wanted to run more bloodwork before she gives it to me, and she was unsure if she wants me to take it in a shot or a pill. Today she called to say the first round of my bloodwork has come back and looks normal, but after staying up all night researching all of my problems she thinks that with the Reynolds Syndrome I have a higher risk of blood clots, so she wants me to do the shot. Not sure what all that entails yet....

She prescribed Zertec for my allergies that showed up in my MRI. I'm supposed to run to the doctor if I ever start feeling my face get tight and stuffy, or my nose is really runny, or something. I guess that it's not bad as long as I'm feeling okay, but it could get serious...?

While I was vacationing in CA, my really ugly toenail cracked. What, you don't know about my super nasty toenail? See, I've had Reynolds Syndrome for around five years, and about a year ago my right big toenail started going yellow and gross because of it. Look, I took a picture!


Beautiful, yes? I really admire my depth of field.

Anyway, I asked my doctor what I was supposed to do about the cracked nail, because it was split right across the middle. (You can see the crack if you look carefully at the picture.) She was cautious and cutting it, because she didn't want to if the skin underneath wasn't done healing. But as she looked at it, she did end up cutting it off except for the far right side, which is still attached to my toe. So now my toe is even uglier. Except now I have to wear a band aid all the time, so no one has to look at it. (Note: You can get your siblings to do almost anything if you threaten to touch them with your rotten looking toe.)

I also asked her about the two remaining sets of immunization shots I have left, which I can't really take with my Rhuem. drugs after I go on those. She thought that I could go down and get the last ones, so I went down later. But they wouldn't let me take them. Today my doctor called with the bloodwork results, and she said that they were feeding us a load of nonsense so she's going down to make them let me get my last set tomorrow.

This first appointment was really fast, because I had an appointment with my Rhuematologist right after it.

Last time I saw my Rhuematologist, he gave me Prednisone for a short-term fix to try and slow down the rapid increase of damage I was having. It ended up being the perfect timing, considering on the second day I was on it we drove to CA for 28 hours straight. This drive would have been torturous, but the Prednisone worked like I charm and on the dawn of our overnight drive I found I could make a fist with my right hand for the first time in months. It was also extremely nice to not be inflamed while I was playing with my three year old niece (who was not very gentle with my hands).

I told him about all of that. I relayed everything from my spinal surgeon appointment and my appointment with my all-around doctor. We decided that I would wait to go on Methotrexate until my other doctor had approved my other prescription, but I could go ahead and start Humira. I got a fun little box of goodies (namely: a DVD and practice pen).

I asked my Rhuematologist about running. When my other Rhuematologist diagnosed me [incorrectly] with Fibromyalgia, he said I shouldn't run or do something that stresses my joints (like dancing). With moving off to school and such soon, I wanted to know what would best work for me as I try to take advantage of the classes and such they offer. He said that I can run, and that he'd encourage me to exercise however I can, because exercise normally helps in the long run even if it's a little painful. So now Mom is trying to convince me to run a 5K with her... Which I'll probably try to attempt.

Anyway, I have the Humira to start taking. It's a shot, sort of like a diabetic's blood checking tool. You hold it up to your stomach and it shoots out, injects the stuff, and shoots back in the tube. It doesn't look absolutely awful, at least. I'm supposed to do it once every two weeks. I'm going to try and do it on Mondays. I'm also going to attempt to do a dietary thing before I start, just to rule out food allergies once and for all...

I think that's it. I have an appointment with my neurologist on June 3rd and with my Rhuematologist and all-around in late June.