Sunday, August 28, 2011

Flares R Us

Just ended a flare.  Finally.  This one seemed to last longer.  I woke up this morning drenched in sweat but feeling clearer than I have in days.  Sometimes its hard to tell when I am in a flare until I come out of it. Sounds kind of weird, huh? My days are all pretty much the same since Rob is out of work.  He is great. He handles everything when he is home.  Almost too much.  I feel like I am invisible.  The kids all go to him instead of me.  Most of the time its nice, other times its just boring.  I spend all of my time in my room.  My Daisy Doodle comes in to visit & beg for ice cubes.  Going to keep this short & sweet as I ease back into the land of the living.

Tuesday, August 16, 2011

I miss my bed!

     Spent yesterday shopping for new bedding.  We got one of the Sealy Latex sets.  Should have had it delivered & set up.  Hubby Rob & I spent all afternoon moving things around, by early evening I had to stop & he had to finish.  I know better than to try and do stuff like that, but sometimes I get so tired of being helpless & I end up overdoing it.  Didn't sleep last night, finally just got up.  As bad as the old bedding was I miss it LOL.  The new set is hot, which I specifically asked about and was told that it had a polar tech topper & also the mattress cover would prevent it from being hot. Even Rob was complaining about it.  Guess we will have to give it a couple of weeks to see if we can adjust to it.
     On a lighter & better note, I received my order from Misha.  I ordered the Perfect Cover BB Cream
that I had been hearing so much about.  I gave it a try yesterday and was very, very impressed.  I applied it using my fingers and set it with my Bare Minerals foundation.  It looked fantastic and it lasted all day with no touch ups or fading.  I really like the packaging also.  It comes in a 50ml tube that has a pump.  It took a few pumps to get it going but once the product came out it took about 2 pumps worth of product for complete coverage.  Missha offers several different types of the BB cream, I chose this one because of the SPF 42 and the anti aging ingredients.  Going to keep using for a few weeks & make sure no problems.  As of right now, its my new "holy grail" primer. I also received several samples with my order, Signature Real Complete BB cream and 2 trial bottles of Time Resolution wrinkle cream.  I have not tried the samples yet, I wanted to make sure that I got a true impression of the product that I ordered.  I need to make a trip to Ulta to use my rewards before they expire.  I had intended to go today, but after yesterday I'm not sure that will happen.  Overdoing usually causes a minor flare that lasts a couple of days.
     Getting a little sleepy, so I am going to give the bed another go.  Here is hoping for pain-free days!  

Sunday, August 14, 2011

Sucker Punched-My Story

     A sucker punch is a blow made without warning, allowing no time for preparation or defense on the part of the recipient. The term is generally reserved for situations where the way in which the blow has been delivered is considered unfair or unethical.
    Firbromyalgia is a debilitating, though not fatal condition.  I can trace it back to an automobile accident in 1995.  At the time I was 6 months pregnant with my youngest child.  My focus was on the health of my baby and not my own.  They told me that the pregnancy was still viable and that there was no way to tell if she sustained any injuries. The next few years we held our breath.  She was fine however, I was not.  I have not been able to sleep for more than a couple of hours since that wreck due to pain.
     I was raised in a family that disregarded illness and pain.  You didn't miss school or work unless a doctor forbid it.  I was seen by doctors at the Leatherman Spine Center in Louisville, KY where I was pronounced with no visible injuries but they did send me to physical therapy.  Over the years I had several courses of PT for different pains, back and neck mostly.  I had good days and bad days.  I had the most problem with "my wings" as I called them.  I continued to work through the pain.  I worked in finance, which I loved.  It ran in the family.  My father was also in finance and ultimately became the president of one of the largest consumer finance companies in the U.S. I was supermom.  I worked 60 hours a week, had 3 small children and a husband who mostly worked out of town.
     The first time I ever heard the term "fibromyalgia" was in 2000.  I believe the article was in Good Housekeeping.  I read it, showed it to my husband and said this is me.  He agreed.  I took the article to my primary care physician and showed her.  She said that it was not me and that people who had fibro were very sick and not able to do the things that I was doing.  I felt like a fool.  Over the next few years I had 2 surgeries.  The first was to remove a cyst  and a tumor from my ovary.  30 days later the tumor was back and I had a total abdominal hysterectomy, I was 34.  My problems continued to get worse.  I had headaches, migraines, neck pain, back pain and many bad days.
     I had left my job in finance because I could no longer work the hours.  I went to work for an insurance company in a call center.  After 3 years I had to leave there.  It was impossible to get time off for sick kids, dr appointments or anything.  I started working for a home health agency.  I ended up working with one client for several years.  She has fibro, trigeminal neuragia along with many other conditions.  One of my duties was to take her to her dr appointments.  Her pain management doctor was wonderful, I will call him Dr. K.  I learned the ins and outs of pain management and saw what great things it did for my client.  One day I had taken her to see Dr K for her monthly appointment, I was having a really, really bad day.  I talked to him after her appointment and he encouraged me to have my PCP set up an appointment for me.
     I went to my PCP( the same one that said I didn't have fibro) and she reluctantly set up the appointment.  I swear she was related to my parents and didn't believe in pain.  Dr K saved my life.  I can't imagine where I would be today without him.  He gave me cervical facet injections as well as medications.  Most importantly, he validated my pain.  After seeing him for a couple of years, I went in for my appointment and he wasn't there, I was seeing the nurse practitioner and she told me that he had left the practice.  I was devastated. One of the doctors that had started the practice was filling in.  He wanted me to have an epidural in my lower back.  I was terrified.  I don't like having things done to my lower back, it scares me.  All the horror stories that you hear are always about the lumbar spine procedures.  I had not even met this doctor and he said that I had to have this or they would not fill my prescriptions.  I reluctantly agreed.  I left the office and they were to call me with the appointment date & time. The nurse that called me gave me the date, which was a Saturday.  I questioned her because I knew that the surgical center (where they had done my facet injections) was not open on weekends and she said oh no, he is going to do it here in the office.  This was crazy, the more I thought about it the more scared I got.  I knew Dr K was working at the surgical center, he was the resident anesthesiologist.  I called the surgical center and left a message for him.  I told him what was going on with the epidural and about not refilling my prescriptions and asked him if they could hold me hostage like that.  He said that no it was not ethical and possibly not legal for them to do it.  He made me an appointment at the surgical center to see him.  At the appointment he told me that he was going to open his own practice but would continue to see me at the surgical center if I wanted.  Hell yes!
I was one of his first patients at the new practice.  You will be happy to know that Dr T, the one that wanted to do the epidural, has since lost his license and is in trouble for medicare fraud and many other malpractice issues including holding patients hostage & forcing procedures on them.
     I've been seeing Dr K for about 7 years now.  He most recently assisted me in getting my Social Security Disability.  Because of my age (45) they would not have approved it without him.  My attorney said that she had never seen a doctor that documented things as well as he did.  SS had denied my original claim and I had to go to a hearing.  Senator Lugar (IN) assisted in getting my hearing quickly.  I did not have to wait for a decision.  The judge told me that he was approving it and that he hoped that I would be able to continue getting treatment and get better because I had a lot of living yet to do.  Of course it didn't hurt that I was having one of my worst days ever when I went to court.  My sister had to take me, I couldn't drive, I could barely get dressed.  I felt so bad afterward that I couldn't even celebrate my victory.
     So here I am now.  3 months after being declared 'disabled'.  I still feel guilty for not working.  I feel lazy, even though I know that there is no way that I can work right now.  Maybe someday.  I miss it. I decided to try blogging to help with my fibro fog.  The fog along with the medication side effects are my worst enemy right now.  I play word games and read as much as I can to slow down my brain loss.  Who ever said "if you don't use it, you lose it" was so right.