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.

Spinal Surgeon

Saw the spinal surgeon today. It was sort of funny, because when he first came in after looking at my MRI pictures he was like, "You are very strange." I was like, "I know."

He went through the normal long list of questions, and then checked all my reflexes and pushed me around some like the neurologist did before.

After showing my my picture and talking about my lack of falls or car accidents, he laid it out something like this. My syrinx (fluid in spine) can be caused by one of four things: 1) An injury, such as a fall or car accident, 2) A tumor, 3) I was born with it (very rare) or 4) Something I forgot but it didn't remotely apply to me.

The most likely answer is that it's a tumor (which didn't show up on the MRI) or I was born with it. What he wants to do is have me come back for another spine MRI in six months and see if there is any sign of the problem getting worse or any clue as to the existence of a tumor. From there, we'll decide if it's necessary to have an operation. Since the tremors and such I experience are annoying but not greatly effecting my life, he thinks that (unless a tumor shows up/it gets worse) I should just live with it. The spinal surgery is very risky, because the fluid is inside of my spine so they'd have to get into it without crippling me.

I'm fairly satisfied with the appointment. Afterward, my mom remembered that I had fallen off a horse once and asked about that. But when I fell, the stirrup had broke and I was leaning almost to the ground already before I let go of the galloping horse and fell all the way. I also don't remember if I landed on my shoulder or my back, and I don't remember feeling any pain. So I don't think that counts as a big fall. I also fell down the stairs once in Wakefield and hurt my tailbone pretty bad, but I wasn't seen about it and after a few days of soreness I was fine. So I don't think that counts as a dramatic fall either. I'd forgotten all about those incidents though, or I would have mentioned them.

I see my primary care doctor and Rheumatologist on the 19th, and I'm going to try to schedule my next appointment with my neurologist for the same day. Tomorrow I'm starting my short-term fix Rhuem. drugs.

Taming the Beast

In my Rheum. appointment today, we discussed my inflammation levels. My doctor is putting me on a quick-fix drug that I'm supposed to take for like ten days, and hopefully it will calm down my inflammation for a few more weeks while we get ready for me to go onto some of the more serious medications.

I've sort of got information overload at the moment. I am still trying to process everything we talked about.

We talked about whether or not I wanted to go step-by-step with the drugs or if I'd like to hit it hard and fast with everything. I said hard and fast, because then if I react badly I'll still be at home and within an easy distance from my specialist. In July, I'm moving out of state to Berry College. I figured if I get used to whatever the side effects the month before I leave, and then maybe it won't be so hard of a transition when I'm there.

We're talking about me going on Methotrexate and Humira while continuing with Plaquenil. There are a ton of side effects to these medicines... but if I could knock it out, I could be over with this stuff in a few years. Not that that's a garentee... but I think it's worth it. It's also definitely better to do it now than wait until I am married/am thinking about getting married later in my twenties. I'm sort of nervous about Humira simply because it's a shot... but the alternative is something like an insulin pump that I'd have to go to the doctor's every couple of weeks to have refilled, so really there isn't an option.

I have to talk to my main doctor about another perscription I need as a protection while taking these drugs, and I have to talk to my spinal person about the effects Humira could have on my spine. I have my appointment with the spine person on Wednesday, and then I'm seeing my Rheumatologist and main doctor and Nuerologist all in late May.

I'm sort of overwhelmed, but trying not to be. I'm just trying to trust that God will keep me safe, and that I'll survive working through college with all this junk going on.

Neurologist's Call

My neurologist called today to get back to me about the MRI. He said that my brain is unremarkable - however, there is an unusual fluid on my spine. He mentioned Syrinx, which is a fluid-filled cavity within the spinal cord. The symptoms seem to be consistent with my symptoms. I am getting a referral to see a spinal specialist out of town. I'm supposed to contact the neurologist if my symptoms change or get worse. After I see the spine person, I'm supposed to go back to the neurologist to discuss what might be going on and how to treat it.

I am also waiting for a call from my Rheumatologist. For the last two weeks, my hands have been severely inflamed to the point where I can barely grasp anything. My middle right finger has started hurting even when I'm not doing anything - like little electrocutions from the lower joint in the finger. So I called him today to ask for a phone consult. I figured I can tell him what's going on and hear the results of my last batch of bloodwork and x-rays, and then I'll see if I need to come in again or not.

MRI Results

So, I had my MRI about a week ago. The first and longest session was the hardest. It was about an hour long, extremely hot and my stomach was upset. But all in all, it went okay.

I finally heard something about my MRI results today. I've been playing phone tag with the doctor for a while. I was out of town for the last week, and he's on leave this week. The nurse called to say she had looked over the report, and from what she could see my brain was "unremarkable," which is a good thing. :) When the real doctor gets back, he's going to review it all and then contact us to see whether or not we need to go back again.

So... that's a good thing.

Progression of RA

Went to see my Rheum. today. This is the first time I've seen him in the afternoon, which I think is a good thing. I described my problems, and he had me fill out a little sheet about how difficult things are. After giving me the normal physical look-over, he sat down and said that he thinks my symptoms are getting worse. He is seriously thinking about putting me on Methotrexate.

I guess I was sort of starting to hope I wouldn't get worse, because I am a little stunned. Well, stunned isn't the right word... maybe anxious or numb...

I have to go back for x-rays and bloodwork tomorrow. Then we'll have a better idea.

My 3 hour long MRI is on Friday.

Last Physical Therapy

I had my last physical therapy appointment for a while last Thursday.

He popped my hip back in joint and gave me a few pointers, then let me on my way.

Have an appointment with the Rheum. on Monday... We'll see how that goes. I think this might be my routine gallons of blood and tons of x-rays appointment.

Muscle Testing

I have my muscle/nerve test thing this morning. I had pretty much no idea what I was in for. This turned out to be a good thing.

If You Expect To Take This Test In The Near Future, Read This Paragraph And No More:
To those that are going to take this test, just believe the nurse. It doesn't last forever. The shock part is not necessarily that painful. The needle part is not much worse than getting blood drawn.

If You Think You'll Never Take This Test:
This was the most painful medical procedure I've experienced in my life. Giving blood and getting your wisdom teeth pulled is nothing in comparison.

The first half is electrocution. The nurse sticks metal circles all over your leg and foot and then shocks you a lot. Some of them are not hard, and they don't really hurt. But every now and then she gives you a good bolt of lightning in your leg, and that hurts pretty bad. However, it's true that it doesn't last forever. If you grit your teeth and squeeze your eyes shut, you might get through it with just a few whimpers.

The second half is getting a needle poked in your leg. Not so bad, right? I mean, I've given gallons of blood to doctors. I've learned to conquer my fear of needles. But this is no ordinary needle. I'm not sure if it was a camera needle (my mom says not) or if he was just poking it around. But this needle moves. And it keeps poking deep into your muscles with an excruciating level of agony.

If you have read Lord of the Rings: The Fellowship of the Ring, you know that Frodo lived for a few chapters with a bit of the Ringwraith's sword tip making its way to his heart. I think the Ringwraith consulted this needle when his sword was made, because this pain is pretty much just like that.

You know the people who said this wasn't any worse than getting bloodwork done? They lied.

I bit my lip very hard, sweated, and squeezed my arms tight. I started crying a few tears of pain about midway through. The doctor stopped for a few minutes to get me tissues and let me calm down (I was on the verge of bursting into sobs, but I managed to swallow it). He asked me if I wanted to stop and I said I was fine. I did a little better through the rest of it. The last poke was in my hip, which hurt pretty bad.

In the end, I managed not to totally melt down and I limped out. I had to go get my bloodwork that the doctors wasted yesterday done again. The nurse lectured me about proper handling of a post-bloodwork arm after I asked her not to take blood from my bruised and drained arm from yesterday. I sort of wanted to say, "Bite me, please." But she wasn't being mean, she just didn't know my Experience in Bloodwork or that I had just undergone torture.

Now I am very tired.