Monday, October 19, 2009

Monday October 19th 2009

I am still feelin icky. I hope that the flu goes away soon. The pain from it and FMS is to much at times. I have been having headaches and chest pain all week. Today the chest pain was very painful. It had a hold of me. It felt like I needed an adjustment between my shoulder blades badly. It wrapped around to my chest and boy did it hurt.
I've been trying to get my doctor from the pain clinic to refer me to a rhuemitologist in Peoria. A friend recommended her to me. I guess she specializes in FMS. So, my doctors office called today and said they would prefer if my family doctor did it. Are you kidding me? Its a phone call. It's helping your patient. I have got to say that I didn't expect much from him due to my past visits but this was stupid.
I called my family doctor to see if they will do this for me. Hopefully they do. I don't know why they wouldn't. The problem is this doctor didn't even diagnose me. She couldn't figure it out.
I feel like the health care system in my life is failing me. I need to make some major adjustments.
What to do what to do???

Tuesday, October 13, 2009

Nick has something to say


Hi my name is Nick. I am 11 years old. I have somthings to say about my mom and her Fibromyalgia. First its hard to not be able to do what normal familys do. Second its so hard to try to live a normal life. Third its not easy to come home from school and her not feel good so I do what I need to and then I help her. Forth I like to go out to eat but she has went through so much with geting surgery on her back and galbladder. And its hard but me and my family will help my mom get through it. No mater what happens I will help my mom.

October 7th-13th

Dear Blogary,
I have done a really bad job at keeping track of my days. Wow, I have had a rough few days. Headaches stink. I'm really just starting to feel better. Between my headaches and body pain I thought I was going to lose my mind. I have been relying on my dear sweet husband to care for me the last few days. He is so sweet. I am not sure what to do with him.
I am waiting very patiently until November 24th so I can go to the Pain Clinic again. Im still waiting for my referral to OSF Saint Francis.
Heidi

Tuesday, October 6, 2009

Tuesday October 5th, 2009

I'm going to use my blog as a journal, a diary...a blogary! I need to do this to track my symptoms and activity, etc. I will always "title" them with dates. Not names. If you choose not to read those, I understand.

Dear Blogary,
Today I am feeling slightly energetic but to sore and weak to do anything about it. I did go to town today and meet Bob for lunch. After that I ran a couple errands and on my way home I was exhausted. I couldn't wait to get home. My limbs are weak, probably from lack of use! Actually, this is untrue. I have a good day and then I over do it. So afraid to not get it all done. I should just do a little at a time in small doses. Maybe I'll try this.
My legs have that "Ive been all them all day" feeling, but I haven't. There is always that severe stabbing, burning, aching feeling in my left BUTT. Oh how I hate that.
My Left arm is numb. I really don't know how to explain it other than that but there surely is another issue than numbness with it. It kinda feels electric. Weird huh?
I have that headache that is not quite a headache lingering in the back of my head. Just waiting there patiently. Waiting till I have something planned or even worse, my kids have something planned. Hope it chills there for a while, I really don't have time for it.
I did however drink a cup of coffee this morning. You see, Bob, my husband, is on patrol. he is on it when it comes to stopping me from having things that are gonna get me later. But today, he felt for me and let me have a cup. Maybe I wont tell him about the headache and he just might do it again!
Sierra has a conference today. Oh the thought of sitting in that little elementary sized chair. Not excited about that, at all. Oh well it will be over in 15 minutes.
Then I'm home to watch the Biggest Loser and leave for my bible study group. Hopefully I survive to the end of the day. I'm already exhausted.
Back at ya later,
Heidi

10 things I've learned about having an invisble illness


Ten Things I have learned about having an invisible illness.



  1. My husband and children love me unconditionally. They have seen me at my worst. They have picked up me broken pieces, washed them off and tried to glue them back together! They dont care that I lay on the couch for 3 days in a row and may smell as if I need a car wash. They love me, pain or no pain, with or without smiles, they love me.

  2. Good doctors are few and far between. I can not count using my hands and feet how many doctors I have visited who didnt correctly diagnose me, treat me or even show they care. Far to often I have found myself being just an insurance check and not as a person begging for help. Relief. I feel betrayed or cheated by my doctors. I really think they need to teach them how to properly feel for their patients. Im aching to find one that shows just a little bit of concern for my well being. Someone who cares that I hurt this much. Someone who isnt worried about that $ and worries more about my care.

  3. People judge way to fast. Whether I am parking in a handcap spot or walking "funny". People give me ugly looks. You see, I look just fine, but I am not. This has taught me valuable lessons about myself. I was just like those people before I got sick.

  4. Time doesnt stop for me. It just keeps ticking, tic toc, I'm still...hurting. Life goes on. Maybe if I can muster the strength, today I can get up and join the world outside.

  5. My children feel my pain. Maybe they don't feel it physically but they do feel pain for me. It hurts me to know that my pain causes them to hurt too. They love their mama. In a way, it makes me feel good because I know in their sadness, it is love.

  6. Family and friends dont always "care". Sometimes I get the feeling my "people" dont really care when they ask how I am. When I give them an answer they act like they would rather not hear me. Why ask? Does it bother you that much to know I am hurting? Do you believe me? Do you roll you eyes over the phone?

  7. My cat knows. I have found that on days I really really really feel bad, my cat Thomas is there. he will sleep with me for hours if not the entire day. Sometimes he even lays right where it hurts or right near it. Its like he senses my pain.

  8. Most people don't go out of there way to help you. Sadly, this is true. I think I am the kind of person who would walk to the end of the earth for someone, even in pain. Yet, the people I have been there for...not so much. Also the people I thought would be there for me, not so much. Where did the days go when people watched out for one another?

  9. I think my mind plays tricks on me.

  10. I am stronger than I have ever gave myself credit for.

Monday, October 5, 2009

Sierra has some thing to say


Hi,my name is Sierra and I am 8 years old. I cry sometimes because my mom has fibromyalgia. After school I ask my mommy if I can rub any places that hurt. So I can help my mommy try to feel better. Sometimes I call that a "Sierra Spa." Someday I hope my mom can feel the best. And this is my blog.