Monday, February 27, 2012

An Adventuresome Visit to the Rheumatologist!

I really need to get back in the habit of blogging more regularly...

This week was much better as far as the adrenal/autonomic issues are concerned. I've had way less racing heart/shaking/feeling terribly weak episodes, which has been great! I dunno if my body is just liking the increased steroids or if it's something totally random. I just have no idea. Unfortunately, I've had a very, very rough time with pain - it's the worst it's been since I went to the ER for pain back in April.

Tuesday found me at the doctor's office for a happy reason: getting my vaccines up to date for the Physician Assistant program I'm starting in a few months. I also had to discuss getting a letter so I can receive accommodations at school due to my illnesses, if necessary. Anyways, the next day, I started having terrible pain. It was just awful.

Thursday I was supposed to see the Rheum PA for a follow up since I started a new medication for pain about 6 weeks ago. I called about a week earlier, since it wasn't doing anything except taking up space in my weekly pill containers. The message was for me to double the medication. Since I started out taking 100 mg pills 3x/day, and I would now be up to 600 mg 3x/day, I asked the nurse if she could call in a stronger strength, since I wasn't too keen on taking 18 pills per day. This was very confusing to the nurse for some reason, so I received FIVE calls back while she was trying to figure out the math. When I went to the pharmacy to pick it up, the nurse had called in three different prescriptions... and the only one that was NOT in the 100 mg pills was only a ten-day supply of the med. Innnnteresting!

Anyways, I was in so much pain by Thursday that I could not imagine dragging myself through the construction, across the metroplex, to the parking garage, to the bus, to the building, up the elevator, across the floor, into the office and back again. I was seriously debating canceling my appointment, but a good friend reminded me that I always complain that I never see the doctor when I'm feeling bad. Here was my opportunity.

The nurse (thankfully not the one I talked to on the phone, I'm pretty sure she was embarrassed to show her face) asked me if I was okay. Guess I looked like I was not feeling well. The PA asked if I had noticed any change on the new medication, and I told her that I hadn't. "Huh. Well, if people are going to benefit, they usually do within several days of taking it." So I asked the PA if I could start tapering off the new med, since I hadn't noticed any relief at all (in fact, I was feeling worse), even at the higher dosage.
"Well, we can discuss that after you've been on it  for 2-3 more months."
"So if people are going to be helped by this med, they usually can tell something pretty soon after starting it."
"Well, yes, typically."
"So I have actually gotten worse."
"Maybe you just need to stay on it longer."
"But you just said that it usually works pretty quickly."
"Well, we all know you don't follow the rules."
So I guess it'll be taking up space in my pill container for the next couple months. She as good as told me that she is just stalling because they don't know what else to do to help my pain. We discussed upping the methotrexate shot, but decided to wait for now since most of my pain is muscular, and of my joints, only my hands and wrists are really bad right now. She also gave me a new muscle relaxant to try. It was like drinking several glasses of wine really quickly on a really empty stomach. I'm not a fan!

When I got back down to the lobby to wait for the bus to take me back to the parking garage, I sat down next to an excellent older couple. The man was adjusting the blanket covering his wife, who was in a wheelchair. I texted a friend, and he said, "Excuse me, you seem very proficient with electronics. Can you help me with something?"

I'm not sure that being able to send a text translates into proficiency with electronics, but what was I going to say? He showed me his phone, which wouldn't allow him to make outgoing calls. I took a look and had no idea what was wrong, and noticed my bus pulling in the driveway. I apologized, but he didn't hear me, so I tried to say it again, then he started talking, and I tried to wrap things up, but I missed the bus.

This was the best thing that happened to me that entire day.

This man, whose name I never got, tenderly told me of his romance with his wife, who is now unresponsive and requires constant care after a 35-year battle with Parkinson's. He reeled me in with a fantastic joke:

What's the difference between God and a doctor?
God doesn't think He's a doctor.

And it just kept getting better from there. He fought in Korea, was a telegraph operator in North Dakota, worked on the railroads in Clovis, married a girl who he thought would provide him with financial stability, since her father owned a large farm, but he didn't count on her being such a hard worker who whipped his lazy self into shape (his words, not mine). She worked her way from bank secretary to the first female Loan Officer, up to Vice President, just with a high school education... he went on and on. And I fixed his phone.

Nearly an HOUR later, my bus finally made a return voyage after another shuttle driver took pity on me (he had made three trips around the campus before my bus made it back once) and called up the bus and told them to get back over here. By this time, there were so many of us waiting that that entire bus was filled, with people standing up. An elderly gentleman nobly (and in no uncertain terms) asked me to take his seat, and he stood. His little wife, who couldn't have been a day younger than 90, leaned over and said to me:
"Have you noticed anything about this bus?"
I wasn't sure what she meant.
"You're at least FIFTY years younger than everyone else!"
She was right. Gee, thanks, lady, rub it in. Haha.

By this time, I really was hurting terribly, and I had had to wait for the bus so long that I got caught in rush-hour traffic all the way home. I put my miserable self to bed. There's more to my week, but that's all for this post, since this is excessively long already! That'll teach me to go so long without posting!

Hannah ;)

Sunday, February 19, 2012

Twenty Questions With Myself

My wound, the wound that has been trying to heal since June 28, the wound that we treated with a WoundVAC for 80 days and thrice-weekly wound care at a facility an hour away for months, the wound that began to improve after weekly injections of a chemo drug, the wound which had decreased to smaller than a paper clip...

... has split open.

I cried. 

Dr. Saturday warned me that I had to be careful, that wounds in this, um, area (between the cheeks) tend to rip open at this stage. He was right. I don't even know what I did that made it open up again. All I know is that Friday, it was tiny, and then yesterday... it was two or three times bigger.

I had to play "Twenty Questions" with myself.

Did I do something irresponsible, intentional or sinful to make it open up?
Is God in control?
So did He know that this was going to happen?
Did He allow, and in fact, ordain for this to happen?

Can you please remember that God parted the Red Sea for His people?
Hasn't God done much harder things than heal a little wound?
Isn't He powerful enough to overcome a setback with your wound?

Isn't your health better now, in some ways, than it was a year ago?
Hasn't God allowed you to reach a healthy weight, caused your arthritis to greatly improve, decreased your belly pain, and grow much healthier?
Hasn't God allowed your wound to go from large(10 cm long, and 8 cm deep) to minuscule?
So is there any reason to doubt that He cannot heal this wound?

Is God good?
Doesn't He cause all things to work together for good for those who love Him, who have been called according to His purpose?


Well....then BUCK UP, Hannah! ;)

Or, to put it more poetically:

"For I know, whate'er befall me,
Jesus doeth all things well."

Hannah ;)

Tuesday, February 14, 2012

Ranting Post

Just be warned: this post is a bit of a rant!

A sure cure for my symptoms, whether they be joint swelling or high heart rates, is to have an appointment to see the doctor. On the day of the doctor's visit, my symptoms tend to greatly improve! And this was the case on Monday. After several days of being unable to get of the couch, I woke up doing great on Monday morning. I was very happy (and ran a bunch of errands I'd been putting off due to fatigue)... but slightly frustrated as well! Endo Doc, once again, didn't get to see me when my symptoms were at their peak. After a weekend of very erratic heart rates, my heart rate in her office was still elevated, but didn't change very dramatically when I stood up.

It was a rather frustrating appointment. Endo Doc believes that whatever's going on isn't an endocrine issue, and therefore she has "no idea" what to do. I appreciate her honesty, but didn't she sit through four years of medical school and several years of residency in internal medicine? Shouldn't she therefore have SOME idea what's going on? Specialists are so niched that they are kind of worthless outside of their area... Anyways...

She said she would need to refer me to another doctor, but isn't sure what kind of doctor that would be. I suggested a neurologist who specializes in dysautonomia, but she first wants me to see a cardiologist to get a complete work up. I've already had that done in 2007 due to some heart issues I had because of Prednisone and electrolyte imbalances. Then in 2010, I was in the hospital for three days for testing when the adrenal stuff/weird dizzy/shaky episodes began. They did EKGs and I was on telemetry the entire time - including during one of my "episodes." My chart noted that my EKG was normal and my telemetry was completely normal during the entire hospitalization. Endo Doc says that since there's no note in the chart by a cardiologist, I need another complete work-up by cardiology to rule out any heart problems. Erg. I genuinely believe, and I know my body pretty well, that the problem is NOT with my heart. I think that the heart is a symptom of whatever's happening. I have no desire to wait for months to see a doctor, then get expensive tests repeated, just so they can "rule out" problems, then reach the end of the work up and be no closer to helping me feel better.

So, we compromised and agreed that the next step is to get a tilt-table test done. My understanding is that you are strapped to a table. They monitor your heart and blood pressure while they tilt your body up and down, trying to reproduce your symptoms. I'm sure it's at least as much fun as it sounds. ;) I told her that I'd really like to get this figured out before I start PA school in May, because I am worried I will be unable to attend school if this continues. She told me that was just negative thinking. So I'm sure that positive thinking will get me through PA school even if I can't stand up without a heart rate in the 130s. 

Unfortunately, my pain has not really improved. I've been sorta off-and-on miserable, and the pain is definitely a big part in my overall malaise. I really wish that it would get under control. Endo Doc decided that I should stay up on a slightly higher dose of steroids for the next two months, just to give my body some extra support. A little sad, since I had worked so hard to get down to the dose I've been on for the last 10 months. Of course I can taper back down if I feel up to it, but I agree that my body needs all the help it can get right now.

As she prepared to leave, she hesitated and turned. "I just really wish your doctors had tapered you off steroids before you had surgery in 2009," she said. I reminded her that I was put on high-dose steroids because I was having bloody diarrhea 15 times a day. She said, "Yeah, but since they weren't working, I don't understand why they didn't taper you off steroids before you had surgery." Um, the reason I had to have surgery was that even on a double dose of Remicade twice as often as you're supposed to get it, plus steroids, I continued to flare. When I was flaring, if I started tapering, I always got even worse. So if they had tried to get me off the steroids before surgery, I likely would have DIED, or had to have emergency surgery while still on the steroids. But there you have it - UC treatment from an Endocrine doctor's standpoint! Haha!

At first, I was getting all worried and anxious about the what ifs - what if I continue to deteriorate and can't function, what if I can't get into a good doctor, what if I have to wait to see a doctor for months, what if I have to get expensive, annoying, unnecessary tests, what if I have something that they can't treat, what if I can't do PA school... then I remembered - my faith and hope are in God, not in the means that He may choose to use to help me get healthier. Also, my primary goal is His glory. And if He is most glorified by me being on the couch, unable to get up, then that's honestly where I want to be. How could I want anything other than what brings Him the most glory?

Hannah ;)

Sunday, February 12, 2012

"Interesting" Week

Well, I have again been remiss about posting. I had another "interesting" week this week. Quite honestly, I prefer the boring weeks! I did very well on the higher dose of steroids. I felt great, my heart settled down, my energy was amazing! Then, in the middle of last week, I tapered down a step. I did fine for the first several days, but by this Monday, I was flat on my back and still felt dizzy. Ugh. I called the doctor on Wednesday, and she had me go back up on steroids again. Thursday was better, but by Friday morning, I was feeling awful again.

I saw Jack Black at the beginning of the month. He upped one of my pain meds a bit so I can have better pain control, since we think that my pain level is contributing to my high heart rates. It's a balancing act that I've yet to perfect - taking enough meds to not be incapacitated by pain, but not feeling loopy from drugs. So far, the pain med from Rheumy PA has not made a difference (except I fear it may be playing a role in my dizziness), which is quite disappointing, but we still have room to increase the dosage on it.

I'm going back to see the Endo Doc tomorrow morning... hopefully she will have some good ideas for how to "fix" me! This has not been fun - it's been a big step in the wrong direction. Since my symptoms aren't responding to steroids, the signs are pointing to the autonomic dysfunction we discussed at my last visit. Please pray that she will be able to discern what's going on and how best to help me feel functional again. Also, if I need to be referred to another specialist, it could easily be a 6 month wait. Since I start PA school in May, I'd REALLY like to get this under control before then! Thankfully, God is in control, and He can use whatever means He wants to heal me, if that's His will. He is not limited by doctors or waiting lists or my complex body. ;)

Hannah ;)