Showing posts with label FibroFog. Show all posts
Showing posts with label FibroFog. Show all posts

Wednesday, May 13, 2009

Hold on Tight--life's a wild ride!

Life is certainly never boring around here. Let’s see, last blog post I was waiting to hear back from my echo on my heart, right? Thankfully it turned out normal. Most all my symptoms can be explained by Postural Tachycardia, which is annoying but not serious, and more related to the circulatory system then the heart itself.

As I’d hoped, my health started getting a little better this term, now that my school schedule is more sane. I finally got a sleep aid that helped, also (before that, if I was sleeping at all, I was waking up as often as every fifteen minutes). I finished up the study I was doing on the new Fibro med. I’m hoping to be able to stay off a pain med and just have the sleep med. I really don’t like to be on prescription meds at all if I can help it. So, I had about two weeks of things going pretty well.

Then the next thing hit.

I started having a lot of nausea and abdominal pain, different and longer-lasting than what I normally have with IBS (Irritable Bowel Syndrome--goes along with my Fibro). It didn’t feel like a virus or bug to me, so after several days I saw a doctor who decided it seemed to be a bad flare of IBS and gave me a med, with warnings to watch for appendicitis symptoms.

On Wednesday I was feeling sick and out of it with Fibro Fog, but went to school anyway. At least the cognitive problems provide good humor relief, if you let them! To give the rest of us practice interpreting in K-12 classrooms, a classmate was pretending to teach a 1st grade class, teaching shapes. Those who weren’t interpreting were pretending to be the 1st grade students. Some students pretended to answer questions wrong. As for me, haha, I didn’t have to pretend at all! The “teacher” passed out cardboard shapes and asked a question about road sign shapes. I held up a triangle and announced that yield signs were that shape--rectangles! Then when asked to find two squares, the “teacher” looked at what I was holding up and said, “Um, good try, Amy. You’re almost right!” LOL

I was finally feeling better last Thursday morning. I was excited because my Deaf interpreting tutor, James, had time free during my Mock Interpreting class for the first time all school year. (Mock is where a partner and I go to a real college class and interpret, but with only an imaginary Deaf client). I’m loving the class we’re interpreting in, though it’s a challenge, and I like having a real person to interpret for, so I was looking forward to having James be there. My Mock partner is a classmate, sister in Christ, and dear friend, Holly.

Thankfully I got through the class just fine and was headed to lunch with Holly before we met the tutor again to get feedback. We were almost to the cafeteria when pain hit. Bad. Like a knife ripping straight down from my belly button to my groin. For the next hour it hit me every few minutes. Sitting and laying down just made it worse.

I decided I better call my doctor. I knew they’d want to know if I had a fever, so I asked the college librarian if there was a nurse on campus. By that time I was shaking violently and pale and sweating from the pain. She quickly called security (1st aid response). He was cute. I told him I had Fibromyalgia and he looked blank for a minute and then brightened. “Oh, that’s a liver disease, right?” Um, yeah, not so much. I would have giggled if I hadn’t been so sick.

By then it was time to meet James. The stabs were coming a little less frequently, so stubborn me decided I would try to just push through the hour tutoring time so we could get feedback from James while it was still fresh in his mind. James watched me for a minute and then just got up and left. He’s like, “I’m leaving. Holly is driving you to the doctor.”

It’s so cool how I can see God’s hand in even things like this. Besides the timing of being able to finish the Mock class, it “just happened” that Holly was driving to a place a few blocks from my doctor’s office. She lives 45 minutes away in the opposite direction. That doctor looked at me and sent me straight to the ER (Mom came and picked me up).

I wish I could have the ER doctor for my primary care doctor. He actually talked to both mom and I (instead of ignoring one of us like many do) and explained the options and his opinion but let us have the final say without being pushy. They did blood and urine work and then did an ultrasound of my lower abdomen. Thankfully by then I wasn’t in too much pain. I can’t imagine having to go through an ultrasound if pressure caused pain. As it was, it was a little uncomfortable but mostly just interesting. I could see the pictures on a monitor over the gurney. Much of it wasn’t recognizable, but I was able to pick out my appendix and ovaries. The pictures are so curious…it isn’t a clear picture, but looks more like looking at something that has a thin piece of rubber stretched over it. The harder they push on the ultrasound wand, the tighter the rubber is pressed, making the outline of the organ a little more distinct. The pictures suddenly struck me funny and I got the giggles right in the middle of the ultrasound. Twice! I felt so bad because the poor tech lady couldn’t exactly do her job when the abdomen in question was shaking violently from giggles. Certainly that’s one of the few times in my life when I was saying to myself, “Think sad thoughts. Think sad thoughts.” LOL!

The ultrasounds looked normal. Five hours after arriving at the ER and eight hours after the bad pain first hit, I was sent home with only answers of what it wasn’t… The ER doctor said about 50% of the time they never do figure out what causes that kind of pain.

I’m still feeling a bit odd and achy in my lower right abdomen, but thankfully haven’t had any more severe pain. I have a follow up appointment next week. Unfortunately, I picked up a bad cold, probably compliments of the ER, and now have a bad cough. Just in time for mid-terms.
Ah well, such is life. I’m staying in pretty good spirits despite everything. School itself is going okay, other than the health stuff getting in the way. We have three extra interpreting tutors this term, two Deaf and two hearing interpreters, so we’re getting a variety of perspectives. It’s awesome and they are all so helpful and encouraging.

Last week Debbie Roome of Take Root and Write published an interview of me talking about life with an invisible disability. She writes the column “Daring to Love the Disabled.” The interview is here. I’m thankful for the opportunity to help spread awareness. I also have an article coming out soon in HopeNotes, a Christian magazine for people with chronic illnesses, and an interview being published in a book for teens who have Fibro. I’m thankful that God uses my trials to be able to reach out and help others.
.

Saturday, March 14, 2009

In the land of Uz

I’ve been waiting for this week for a while, but it didn’t bring the answers I’d hoped for. I had my cardiology appointment on Wednesday and got the results back from my second Qualifying Exam yesterday. I was really hoping to pass the QE, and I feel I have the skills to do so, but because of the cognitive problems caused by my Fibro, I often can’t access those skills. It didn't help that I'd just come down with the flu the night before the test. Well, I improved on the sign to voice section of my QE, and passed it, however I actually got a worse score than before on the voice to sign part. Since we have to pass on both parts to get an official Pass, I won’t be able to get an internship or graduate this year. The next opportunity to take the QE is in nine months (we get four total chances to take it).

I have to admit I’m frustrated and discouraged, but I know God has plans. I can see that it was a very good thing I didn’t pass the first QE (no possible chance I could have made it through this term with the addition of an internship--almost didn’t make it as it is), so I know I may look back on this one and see the reasons I didn’t pass. As it is, I’m hoping that I’ll actually be able to take care of myself sufficiently enough to be higher functioning a greater part of the time. This weekend I realized that for the past two terms I’ve been having to spend nine to twelve hours at school (including driving time) everyday. That’s a crazy schedule even for a healthy person. (Because of the specialized program I’m in, I’ve had no control over my schedule.)

Next term will be a little easier since I won’t have the internship. I have my schedule for that term planned out, hopefully with a good balance of rest and continued practice, but I’m not sure what my plan of action will be for over the summer and next year. I need a few more general ed classes for my AA degree, and I need to continue to focus on my interpreting skills, but I think the main key to my success will be to get healthier, and about the only way I can do that is to rest more so my Fibromyalgia symptoms are lessened. I’m praying for guidance as I figure out where God’s leading me for the next year.

Speaking of health, my cardiologist appointment was…interesting. The guy had a rather condescending attitude and I’m quite sure he thought I was 18 and didn’t bother looking at my chart to see that I’m much older than I look. My impression of him didn’t improve when his response to my sign language interpretation studies was, “Oh, then you must work at the blind school.” (believe it or not, that type of comment actually isn’t unusual… but hello, this was a doctor with how many years of schooling??)

Anyway, the cardiologist declared that all my symptoms were simply because I don’t get enough exercise. However, according to my research, it seems that lack of exercise can’t cause heart irregularities. Exercise might help some heart conditions, but lack of it doesn’t cause them. I will be getting a second opinion, but now that my schedule will be getting a little closer to sane, I’ll go ahead and try to add in swimming a few times a week. I’ve heard it often helps Fibro as well as some heart issues.

I suspect my heart issues are actually caused by Postural Orthostatic Tachycardia Syndrome (POTS), which actually isn’t a heart problem, but more of problem with the way the brain communicates with the circulation system. Basically the body has trouble regulating blood circulation, especially when standing, and therefore the brain doesn’t have enough blood. Apparently it’s fairly common for people with Fibro to also have POTS, and unfortunately some of the symptoms are the same. That means if I have it, I’m getting a double dose of debilitating fatigue, cognitive problems, and sleep disorders. Next week I go to my doctor for a prescription sleep med, so I’m hopeful that will help things a little.


*Title from Job 1:1

Monday, December 15, 2008

And the wall came a tumblin' down!

The first term of this year is over and I made it through! Health-wise it was a difficult journey, many days finding me in tears because I was so tired or in so much pain with still too much homework to do. One weekend I went on a short hike with my HomeschoolAlumni.org friends and about landed myself in the urgent care from the pain. Then for about three weeks in the middle of the term I got hit with bad FibroFog (kinda hard to interpret when you can’t remember a word for more than 0.1 second…, and hard to get around when you’re not quite sure what one is suppose to do with the elevator buttons, much less what floor you’re on ;-p ).

BUT! God is so faithful and gave me just enough strength to get through. Thanks for all your prayers. My family and friends were encouraging (and sister-in-Christ classmate Breezy was always ready with a helpful “Amy, you won’t go to hell if you don’t finish your homework.”). My tutor has been so patient, too--he’s a huge part of the reason I’ve made it this far.

As many of you know, I’ve been struggling with my interpreting skills for a few years now. Because of my vision-related learning disabilities and my Fibro, it’s often seemed foolish to keep pushing on against what felt like an unmovable wall. I added a year to the program and voluntarily repeated a few classes in hopes that it would help, but last year it didn’t seem to have made that much difference. Yet I still felt God telling me to keep walking. So I did…just kept marching in silly circles around that Jericho wall, staring at those solid stones, knowing only God could knock them down, and trusting that somehow He would.

And He did!

The end of last term and over the summer I started seeing little cracks in that wall. This year it’s come a tumbling down! My health issues have still been big chunks of rock littering my path, but my interpreting skills have grown in leaps and bounds. Last month we took our first try at the big Qualifying Exam. Most people don’t pass it the first time and I passed the voice part and was fairly close to passing the signing part. I didn’t qualify for the internship yet, but I’m so happy with my score and am confident that I can pass the next one. Just today I got my grades back from all my classes this term and I got all Bs and As. For me that’s particularly amazing.
Now I’ve got three blessed weeks off. I’ll be spending them continuing to practice interpreting, working a little, resting a lot, and finally writing! I’ve so missed writing this term. I’ll be wrapping up the last few details of the latest Peculiar People book, Delivered, and then hopefully getting back to the Heirloom Chronicles.

This month I’m also joining a study at OHSU for a new med for Fibromyalgia. It’s suppose to help with both pain and the FibroFog, so I’m excited about it and am praying I’ll get the real med and not a placebo. I was suppose to have my initial four-hour-long appointment today, but icy roads nixed that plan. Hopefully the roads will clear up sooner than the weather people think, as the longer I wait for my appointment, the longer I’m off pain meds. My family is suppose to head to the beach on Friday, too, and right now the pass is pretty much impassible. At least the snow is pretty on the foothills!
.