Wednesday, February 23, 2011


I applied for Social Security Disability about several months ago because Dr. Merrill thought that it would be a good idea because he didn't foresee any great change in my condition. I thought that it would be a quick fix but 5 months later I am telling you there is nothing quick about the Social Security Administration.
I am scheduled to see a psychologist on Tuesday week after next week for evaluation of my psyche! Then the next day my doctor is sending me to a neurologist in Oklahoma City to see if he figure out what is going on with my balance etc. Dr. Merrill's words were that he doesn't know what to do and he thinks this neurologist MIGHT be able to figure it out. Now it doesn't stop there. The next week the SSDI people have set up an appointment with a Dr. Burke, an osteopathic doctor, for me to evaluate my condition.
I guess I could stay up all night and be in a good condition for him to evaluate me huh!! That's when I have the most problems when I am tired and stressed.

Saturday, February 19, 2011

Discovery CME program

I just watched a program that has put out on Fibromyalgia. I think the program was very well done and does define what the disease process is all about. It is a 4 segment program that you can watch when you find time. It is geared towards the health care professional but not so high tech that a lay person can't understand it. The name of the program is Fibromyalgia: From Diagnosis to Treatment.

If this link doesn't work the URL is:

I had to log in but I have done CME's there before so I don't know if you have to register to view it or not.

Friday, February 18, 2011

headaches and pains

I went to my brothers house for a visit last weekend and it has taken me almost a week to recover. The trip down was not a problem...about four hours sitting in the car...but a combination of the trip, sleeping in a strange bed, stress from being out of the norm and then the trip home did me in. I don't know what I could have done different but I had a flare up. The headaches are what are really amazing. I seem to be more sensitive to light and noise and have to take care with enclosed spaces. My brother has a new house with high ceilings, lots of windows, and things tend to echo.

I have been up since about 0300 this morning. I go to see the doctor today at about 2pm and I am hoping he will have some suggestions to help me sleep. I need something to knock me out or something cause I am getting so tired so easily. I can't seem to function on a basic level. Here is an article I read by Adrienne Dellwo about FM pain. it is called the 7 Types of Fibromyalgia Pain. I thought it said it right!

When I get tired I get to having memory problems and have difficulty recalling much of anything. I seem to be in a constant fog most days. I thought at first this was my age...58 and I thought OMG! Alzheimer's but it isn't that. Here is another article by the same author regarding the fibrofog!

Enough gripes and moans. I will be back later with a report from the doctor.

Monday, February 7, 2011

Okienurse's Fibromyalgia Blog: 02/07/2011

Well Sunday went by pretty well with just the regular achiness until about 8pm when I started to get a headache from hell. I just couldn't handle it anymore so I took a pill and went to bed!

Sunday, February 6, 2011

Okienurse's Fibromyalgia Blog: 02/05/2011

My day started off great today and then deteriorated. Took me almost 5 hours to grocery shop today and I almost gave it up and called my daughter to come get me. I could have called my husband but I don't know if he could have gotten his low slung car out of the drive.

I got up about 11:30 and felt pretty good. I had an achiness and 'itchiness' on my back that seems to come and go. I am attributing the achiness to the Fibro and the itchiness to dry skin. My husband tried some of his cream for itchiness on my back a couple days ago but it didn't work. It may be neuro!

About 4:30 I decided I needed to run to the store and pick up a few things that I hadn't purchased when Heather and I went to the store a couple days ago and ended up on a wild goose chase around town. Thank god I have a freezer full of stuff cause the four stores I went to sure didn't. I went to 2 Homelands and 2 WalMarts and neither one had a dozen eggs. I finally bought a quart of egg whites and I am hoping that will last until the trucks can make it through the snow. Egg whites aren't bad for cooking in recipes but I know the difference when I make an omelet or scrambled eggs. I couldn't find any store with any ground beef at all. I did see a package of the 96/4 at Walmart but they wanted $4 a pound for it. There was no ground turkey or chicken anyplace either. I found the whole experience stressful and ended up having more pain and memory issues with the third place I went.

One of the good things/bad things that happened in my journeys was that I saw and spoke with a lot of people I hadn't seen in a long, long, long time. I stood and talked with a nurse I used to work with...Hi Lenora!...and swapped lies about what we are doing now. I spent over an hour talking with my nephew and his girlfriend and really tired myself out cause I spent the whole time standing rather than sitting down to talk.

I got home about 10 pm and Chuck helped me carry stuff in to the house and I fixed me something to eat...I didn't eat the whole day...I just forgot. That is an issue I have too...if I get really tired I get forgetful and I forget everything. I forget to eat a lot and have been losing a half of a pound here and there. Not complaining mind you but my blood sugar drops and I get more confused then! I also had a migraine to go with it. It started about 7:30...second store...and lasted till I went to bed last night.A new problem today was what I am sure is a dry eye issue. I began having blurred vision, eyes began itching, I couldn't focus even with the glasses on and if I tried to read a label I would get watery eyes. Something new every day around here.

I went to bed early...about 12:30 and didn't get up until 10am. I feel really tired and grouchy today. I am suppose to go to two different Super Bowl Parties but I really just want to go back to bed. I don't know how being around people and noise are going to effect the headache that is starting up. I am going to take some Ibuprofen and see if it helps. My pain scale rating for yesterday is a 4-5/90% of the day.

Reading over this post I think I sound like a whiner and I don't mean to come across that way. I used to have an exceptionally high pain tolerance but now I seem to hurt and whine a lot! Sorry if you stumble on this site but it is a learning experience for me.

Saturday, February 5, 2011

Okienurse's Fibromyalgia Blog: 02/04/2011

Yesterday turned out to be a fairly good day for me. I woke up about 11 am and it was a snowy gray day! With my usual grim reaper attitude I thought to myself that I was sure it was going to be the pits and even though I was relatively pain free at the moment I just knew that the pain in my back and neck work worsen as the day wore on! I know suck it up girl! I hate whiners!!

Any how my daughter came over about 4pm to pick me up to go to Leslie's scrapbook store for a crop and I was really dreading getting out in the cold and damp but surprise I didn't have much problems cause I took my routine meds on time and added an 800mg Ibuprofen to the mix. I did pretty well until I got tired then I started getting foggy headed and the pain in my legs, back and neck increased. We packed up and headed home just before midnight. I did get a couple of nice tags made that I will post on my Okienurse Paper and Ink blog later today.

Good day today. Pain was minimal...maybe I should make the Ibuprofen a routine twice to three times a day medication... until later in the evening when I ended up taking another Ibuprofen. I developed a migraine while working on the crafts so I took a Lortab and went to bed. Woke up feeling good this morning (2/5.

Friday, February 4, 2011

Okienurse's Fibromyalgia Blog: February 3, 2011

Sorry it has been a couple days since I posted last but quite truthfully I haven't felt like posting much. I try to deny this crap alters my lifestyle but that is a lie to myself. Today was the first day I have been out of the house since last Saturday night and I probably wouldn't have gotten out today if my daughter hadn't come to pull me out of bed and make me go. I was a horrible night trying to sleep last night. I couldn't get comfortable any which way I turned and then in the early morning hours my husband rolled over and cuddled up against my back and I had such pain that I actually felt shocks in my toes and feet. My doctors appointment on Wednesday was canceled because of the blizzard on Tuesday so this will be something new to pass on to him. On to happier things...

The first stop today was a hair cut for me. I haven't had my hair cut since last November so needless to say I was starting to look a little like a shaggy dog. My stylist Carrie told me today that she also has been diagnosed with fibro. Carrie said that after she had her son almost all her symptoms disappeared and now she only has a mild flair up once in awhile. I wish!!! Her son is in 3rd grade so I hope her good luck continues with the decreased flare ups. I had an interesting thing happen when she was cutting my hair at my neckline. I actually had spears of pain go into my neck and back when she was cutting it. When she stopped it stopped but during the experience I almost went to tears. Thank God it didn't last long. There was a 30 minute wait to get my hair done so we walked over to Target (right next door) and bought some cat liter and made it back just in time to get my hair cut! Talk about time management.

Second stop was to eat some lunch at Johnny Carinos. I love the bread and yummy pasta there! Heather is vegan and sometimes it is hard to find food for her just anywhere but like she said usually there is no problem at a Mexican or Italian restaurant and both of us love those types of ethnic foods.

Next we went to Hobby Lobby to get some glue runners for me so I would have a supply to make my projects with. I wish I could afford to order it all from Stampin Up! but being off work without pay for so long has made me reconsider where my penny's get spent!

By this time I was starting to get a little tired so we went over to Heather's house to sit around and visit with her husband and a friend for a little while to rest up before she took me to Walmart to pick up a few essential groceries I needed then she brought me home. All in all I had a good day and didn't have to ride one of those damnable...only because I hate riding in them...electronic shopping carts. I made it through all the stores and Heather carried most of the stuff through the snow into the house for me. I love my baby girl and she certainly goes above and beyond to help me.

It has been a good day for me with just a mild flu type achiness in my back and chest wall but now I am hurting 6/10scale and I just took a Lortab 10mg after taking a Ibuprofen 800mg an hour ago. As soon as this kicks in I am going to bed and trying to sleep. I really feel worn out and beat down right now. That's the way of it though! Good days and Bad days. Today wasn't bad until now! More tomorrow!

Reading material for today!

I just read this article and thought I would add it to this post! I am also going to add it as a Facebook status! There is proof that we are really in pain!! As if we didn't know...right!!! A new paper* from the University of Michigan Health System (11/2006)says there is "overwhelming data" that the condition is real! This article cites MRI and electron Spect tomography showing a difference in patients with fibro pain and those without!

*University of Michigan Health System (2006, November 28). Pain From Fibromyalgia Is Real, Researchers Say. ScienceDaily.