Checking in

It's been a while since I've posted.  It's been a combination of feeling like I've been hit with a Mack truck or being busy trying to catch up from being run down by said truck.  I was getting back to feeling like I'd been run over with a Volkswagen until the rain and cooler weather hit yesterday.  Oh my!!  When it hit it was quick and viscous. My pain went from my normal Level 5 to Level 9 in about 15 minutes. I was out running an errand and thought I was going to have to call a friend that lived close to where I was and see if I could veg on her couch until Bill got off work and could come pick me up.  I decided that I wanted my own bed and made it home driving slowly and on the back road.  Went to bed and only slept about 4 hours but it was enough to keep me up all night.  I've been up since about 8:00pm Wednesday night with the exception of about 2 hours this afternoon.  I'm headed to bed now to hopeful sleep more than 2 hours. 

Check out Apple Creek Cove, my blog where I'm going to attempt to write about ways that I've found to be able to maintain a semi normal level of domestic bliss in spite of my Fibromyalgia, Chronic Fatigue Syndrome, Myofascial Pain Syndrome, Peripheral Neuropathy, Peripheral Lymphedema, Sjogren's Syndrome, Arthritis, four herniated discs, Carpel Tunnel Syndrome, short term memory loss, sleep apnea and depression.  (I need to check my doc's notes because I feel like I'm leaving something out of my collection of diagnoses.)



As I head off to be at 4:13AM, here's my final thought for Thursday:

Fibromyalgia - She Rules My Life

Today was the best day I've had in awhile. The fatigue was still bad this morning and I went back to bed as soon as Bill left for work. When I woke up about 1:30 I felt much better. My pain was a Level 3 most of the day but as I've been more active it's coming up and it is quickly approaching a Level 4.

For my pain to be so low is not normal.  I wish that it was.  It would make my life and my family's life so much easier.  Sad isn't it?  I know Fibromyalgia all to well.  I know that she will not make my life easier.  Fibromyalgia will do everything she can to make my life difficult.  Fibromyalgia takes away the joy of a good day because you know the other shoe will fall. You know that the pain will return. You know that not only will it return but it could come back with a vengeance like it's never been before.

It rained today and brought the temperature down.  That was a welcome relief. Had the lights not gone out,  I would have gotten a good bit more done.  I did manage to pick up a lot of clutter that was laying around.  It made the house look better and in turn, I felt better.  Tomorrow I hope to get the house vacuumed and the laundry finished.

My sleep specialist called this morning with the results of my study.  My apnea has worsen slightly since I was first tested five years ago.  I've got to take my cpap in tomorrow and have the settings changed.  He is sending the results to my cardiologist so we have one more piece of the cardiac puzzle.  I wish I didn't have to wait until the end of next month for the MRA. I would really love to have all of this finished up. It's like a dark cloud following me around because it leaves a huge question unanswered.  Have I had mini strokes in the past? Is there really a possibility that I could have a stroke or a heart attack and with no warning die immediately?  Do I have multiple sclerosis?  Am I missing out on treatment time that could make a difference in my life in the future?

It's always irritated me that doctors don't seem to have the sense of urgency that we do.  We're told that our condition could be serious and that they need the test to determine exactly what is wrong and the treatment.  It's serious but we can wait a month or more to have the testing done?  I'm also having a hard time wrapping my brain around the fact that even though my cardiologist is requesting the test, I have to see the neurologist first?  It would seem to me that professional courtesy (and common sense) would be to schedule the test, review the results and share them with the requesting specialist.  If it's indeed a cardiology problem, I save the time and money of a neurology appointment and the neurologist has an open appointment for someone that really needs to see him.  If it ends up it's a neurology problem, then we've already got that information when I see the neurologist and treatment gets started sooner.  Makes complete sense to me.  What do you think?

Sleep, Pain and Fibromyalgia

My sleep study seemed to go well.  The doctor will give me a call Monday or Tuesday to let me know if there were any changes from my first one.  My only complaint was that the nurse woke me up about 5:15 this morning. Had she disconnected the electrodes and let me sleep even another hour, it would have been so much better. I finally got awake enough to drive home and climbed into bed as soon as I got here.  I'm not sure that I slept at all.  Once sleep is interrupted, it's hard to go back to sleep. Sometimes impossible.  Many times, I have been awake for 24 - 36 hours because the pain is so severe that it is impossible to get comfortable enough to sleep.  When I finish writing this, I'm going to bed, hopeful that I will be able to sleep.  I'm definitely tired enough. I only had 6 or 7 hours of sleep.  I need almost twice that.

I feel very blessed that my pain has remained at a Level 3: Your minor pain is strong enough to get your attention. You resort to Over-the-Counter (OTC) medications. Had it not stayed low, I'm not sure how I would have been able to sit still long enough for the nurse to glue the electrodes onto my scalp (and my hair).  While she worked, we talked about Fibromyalgia, what can cause it, how it is diagnosed and how it is treated.  Her mom suffered a disabling injury at work several years ago and shows all the signs of having Fibromyalgia. Like most of us, she's having a hard time finding a doctor who will listen to her.  It's sad that that we have to fight so hard to get the treatment we need and deserve. It's sad that family, friends, employers and even doctors are not willing to believe that we are in the severe pain that we truly experience.  We are no longer able to do things that we once could do. Instead of the support we need as our pain changes quickly and severely, we are called lazy and drug seekers.  

I did nothing today but sit and relax, hoping to maintain my pain at Level 3.  We went to the Saturday night healing service at church tonight.  Our priest held my head and prayed for healing before he anointed me with oil.  Next he prayed for Bill to have the strength he needed to care for me. I thank God every night for my wonderful husband who sacrifices so much for me.  I am no longer the woman he married.  No longer the woman who loved to hike, hunt and fish with him. No longer the woman who loved to keep a clean, organized and inviting home for him. No longer the woman who loved to cook healthy, good tasting meals for him. I am now the woman who sits with her feet propped up to keep her pain down to a manageable level, in the midst of a cluttered home.

 

Fibromyalgia is Such a Fickle Disease

Having fibromyalgia is much like dealing with a teenage girl. Not only can you not count on what may be the most important thing in her life tomorrow, you can't count on it to last an hour.  The majority of the day yesterday my pain was Level 5: You can't ignore this pain for more than an hour, even with OTC Medications. You cut back of all activities except the most important ones. Work is possible, but just barely. That's where it was when I got up this morning. I sat on my kitchen stool to fix Bill's lunch and took my morning medicine.  When he left for work, I went back to bed and slept another hour and a half.

When I woke up, I felt like a different person. I don't know why it surprised me because on Tuesday it had changed like that while I was shopping. I've taken it easy today and my pain has stayed around a Level 3: Your minor pain is strong enough to get your attention. You resort to Over-the-Counter (OTC) medications. I am really excited that it's low because tonight I'm going to have a repeat sleep study.  I'm afraid that it would have been very hard to sleep with all those electrodes stuck in my hair and in a strange bed if my pain was up.  Of course, being as fickle as fibromyalgia is, it could change between now and 8pm when I check in at the sleep study center.

I had a sleep study probably five years ago because Bill was desperate to find a solution to my snoring.  He was on the road for work and roomed with a guy with sleep apnea.  During the night this guy became disconnected from his Cpap and Bill woke up to an all to familiar sound.  When he came home we went to see a sleep specialist and sure enough, that was the problem.  It was so good to get a good nights sleep! The entire family was grateful to get one as well.

I am having the sleep study tonight because the ultrasound of my heart showed that I have an enlargement of my right ventricle.   My cardiologist said that normally this is from sleep apnea.  I truthfully don't understand why he is having me retest since I've already been diagnosed but I trust him to be doing the right thing. If I can remember it, I'm going to ask the people at the sleep center why.  


I've had so much testing done recently trying to find out exactly what is wrong.  My edema isn't just edema, it's lymphedema. If compression hose and specialized lymphedema therapy doesn't solve the problem, then I'll have to see a vascular surgeon.  I still don't understand all I've read about it but apparently there are valves in your legs that open and close to allow the fluid to circulate through your body.  Lymphedema is caused by those valves not functioning properly.  I am a high risk for developing the skin infection called cellulitis. I already have what looks like a sunburn from half way down between the knee and ankle on both legs.  Many days I have what is described in medical writings as a 'tight, glossy, "stretched" appearance of the skin'. When my legs are tight like that, they literally weep fluid out my skin.  At first it was a minor annoyance but within the last month it has gotten to the point that the fluid literally puddles on the floor under my feet.  Now we are trying to figure out why I have this problem.

Next month I'm going back to the neurologist because my cardiologist wants me to have a MRA to clarify the findings of the MRI that I had several weeks ago.  My cardiologist isn't convinced that the ischemic changes that showed up are from past ministrokes.  The MRA will either confirm that I have had the ministrokes or that I have multiple sclerosis. 

It would be hard enough going through this testing for a "healthy" person.  It's a huge challenge going through it with fibromyalgia. I can't not go for my appointments or tests even if my pain is at the top of the chart.  They are too hard to schedule in the first place without trying to reschedule them.  I will be so glad when we finally have answers.  In the meantime, I'll continue to trudge on through with my fickle fibro.