On Fibromylagia Awareness Day I wanted to do something special at the college I attended, but I didn't have the energy. This quarter I have 2 online classes, I don't think the extra energy to attend the classroom is in me right now.

I called the local newspaper on Friday May 9th, The Post Bulletin, and asked if they were publishing anything for Fibromylagia AwarenessDay and the Gentlemen that answered said "yes he thought Jeff from the health dept was running something." I said thank you and hung up. I thought about this a bit more and decided it was a bit more personable to me and I wanted to say more.

I called back to the editorial dept. and started rambling on (like I have been known to do to who ever answer the phone-like they know who I am-), and this new gentlemen expalined to me he wasn't the first person.I felt so silly like always.

This second person ended up being Jeff from the health dept. There was going to be a small add in the paper on Fibromylagia and there was going to be speakers up at the Capital. However, he was going to interview a family that he was going to run an article on at a later date and asked me if I wanted to be interviewed as well, I accepted. Well we ended up talking the phone for over an hour.

Jeff asked some basic questions such as when you say you hurt all over, what do you mean? or Do you think some doctors don't believe that fibro even exist ?  I spoke of the emotional part of fibro with him, feeling alone and isolated most of the time. I declined the family photo unlike the other "family" he will be interviewing. I am alone in my struggle with no support and this is why I declined the family photo. My son reminded me not to long ago that it has been quite a few years now that I haven't felt good. He didn't remember when I last felt good. I about started to cry because he was half saying it as a smartass and half as concern so both ways I wanted to cry.

I got into more depth with this reporter and explained to him how chronic fatigue and fibro were connected to each other and he had to refrase me. "So you think Chrinic Fatigue and Fibromylagia are related", I said "very much so if not one in the same". I got into detail about how the medical community needs to recognize CFS just as much as fibro and if you go to the Center for Disease Control they actually launched a national campaign in 2006 for doctors to start recognizeing CFS and on their web site doctors can continue their education and receive college credits 

http://www.cdc.gov/cfs/

another site that is a basic site to explain your immune system is

http://encarta.msn.com/encyclopedia_761575681/Immune_System.html

I think if my immune system would have been better perpared and not so run down, I wouldn't be in the shape that I am in right now. I do want to thank God for the opportunity to try and understand my situation and ask him for his guidence because I use to, and still do, want the answers yesterday to what am I suspose to do. One day at a time is hard.

 Anyways I did my share of awareness and I have a feeling it isn't going to stop here for this town that I live in, at least not for me. Maybe it won't be an everyday thing, but before Jeff at the Post Bulletin, I was creating waves around this town with this clinic that so many look up to, and we should for many things. My mother had a massive stroke with her whole left side down. Now less than 1 year later she is back at home and is driving-how awsome is that! However, research money is not being spent in all the right directions.

I fly to Seattle to the www.fibroandfatigue.com  now with great hopes. My primary care is aware of this and is ok with this as well. The problem is I need to get organized as a person to get my supplements and other things together. Right now I can hardly organize myself with daily living let alone anything else. I just cannot understand what happened to me almost overnight....I was slipping for quite a while though but almost overnight I became so inmobile and out of sorts.

Today wasn't a very good day. I woke up as tired as when i went to bed. I was so stiff, and was very uncomfortable. My neck was stiff, and my left elbow, my knees, and my ankles ached all daylong. I rested and waited for my Doctor's office to call me back. I thought about my life and how i want so much but i can't have it right now. I want to be independent and strong. I don't want it to take me a whole day to do laundry, and i don't want to stay home feeling sick and tired all the time. Yes i have ok days, but i never have good days. I am trying so hard and most of the time i am so close to giving up. Giving up is so easy, and easy is not what i am used to, so i am going to try and keep going.

I have had Fibromylagia-FMS for 8  years (along with other things I hope to discuss at a later time), but only recently diagnosed with Chronic Fatigue Immune Syndrome-CFIDS or CFS.

I hurtmy neck 8 years ago and went through all the standard testing. I(WE) know that the standard testing doctors perform with people with fibro are always ok. I would like to share my MRI from 8/18/2000

I have mild kyphosis of the cervical spine centered at C4-5 level with diffuse disk bulge at C4-5 which is slightly eccentric to the left. There is no significant central spinal or neural foraminal stenosis.

At C5-6 level, there is a more prominent diffuse disk bulge which is eccentric to the right with impression on the ventral aspect of the thecal sac and minimal distortion on the ventral aspect of the spinal cord. There is no intramedullary signal abnormality within the visualized cercical spinal cord. Bone marrow signal characteristics are normal for age. (* For Age* is a courious one to me, along with studies with people with fibro have more neuro endings or neuro transmitters in their spinal canal*)

My more recent MRI states about the same thing and the Spine Center tells me my disk are the same (I read the report and it does read about the same except noe C-3 is also involved). Doctors still won't do anything for my neck and I continue to have a headache with different severety daily. I recently seen a headach specialist and he put me on topamax with hopes to help my daily headaches. After being on 100mg for about 5 mon and no success, I will be going off soon. I think topamax may have helped to stabalize my weight, so I hope my weight will at least maintain. Topamax made 17 different meds I am on....to many!

 My Chiropractor has looked at both my MRIs and has no doubt that my neck was due to an injury, and I now have bone spurs growing on each side of my neck which is the bodys natural way to protect itself. I have had a headache everyday for the last 8 years!I also have 3 other places in my back that has degenerative disk that gives me problems. I had a job at the time that was physically demanding (or was it the supervisor who didn't really like me). ( oh and by the way Workers comp took no responsibility-even in the payments of my medical tests)

At the time of my accident I didn't understand what was happening to me. I was active young mother who now hurt. Just to maintain getting to work and functioning there was challenging. I couldn't do/enjoy the things I once did. I did manage to get out of the machine operator occupation since this was going to kill me, and I went into retail. This helped some. Everything always helps at first.

 As time went on I seem to be in a Fibro flare up everyday. I hurt, my muscles had bubbles that could be rubbed out only to come back within hours. My head hurt on top of everything else and it was coming from my neck. My doctor would give me only a few pain pills or whatever at times, but we have all been looked at by some one or another for wanting to be a druggie. Pain pills, muscle relaxants, sleep aids whatever the case. I have disk that push into my spinal canal and fibro and degenerative disk and my doctor still wants to be scarce on things. My biggest complaint was I wanted something for my headaches and my neck/back aches without making me tired because I had to work.

  I was  tired all the time. I would get up in the morning thinking of looking forward to getting off of work to take a nap! My doctor just said it was the fibro. Flares I thought would come and go but not stay.  Co-workers thought I looked grumpy all the time when I was just concentrating so hard just to be able to accomplish my task at hand.I worked my way up into the company to a postion that was less physically demanding. I worked in Vault/Bookkeeping area of a major retail store. I managed between $120,000 to $200,000 a day for deposit. ( I told you this for later on) I complained to my doctor that my "wake" hours of a day was decreasing. All I could do is work. When I got home there was nothing left. He had no answers for me, just said it was the fibro.

I found myself this last year slipping backwards.  My memory, cognative skills, getting confused, sleeping more, hurting more, fecal incontanance getting worse. I cried for help to the medical community with no success. I live close to a well known clinic yet they are a bit conservative on most things. I went to these dept ( You may be able to see the humor)

• The Spine Center
• no change-I was told that "Some people have bulging disk and never even feel them"-I told that doctor he told me that same line 8 years previously and that "I wasn't other people" and "I did feel them" either pinching in my neck or constantly up my neck and causing me a headache on my left side.
• He did send me down to get cortisone in my faucet joints with no success.

 

• Neurology
• Had me do an MRI-was concerned for headaches and the fluid that would be in my ears when I would get up-all ok
• Wasn't worried about my fecal incontance-"well I sure was"
• I tried to discuss an issue but it was short lived:
• people with Fibromylagia have more neuro transmitters especially in their spinal colom and the Neurologist cut me right off and told me that this has never been proven. Yes it has, but he was the expert, not I. (I thought this was a bit vain for such an important position at such an important clinic)(I also thought that maybe this was the reason why I was feeling these disk bulging into my spinal canal so much compared to others)
• Did send me to get memory testing done-this was very different and I thought for sure I failed-all ok
• I was in school part time and my homework that would take me 4 hours was now taking me double the amount of time need .
• I was getting confused on elevators of where I needed to go.
• Driving  I would get confused where I was going, when I would figure it out I would make wrong turns to get out of the parking lot.
• Always late for work, I am always late for everything anymore.
• One morning I got up and was trying to get dressed and I didn't know what came first my pants or my shoes!

 

• Neorology Surgeon
• Couldn't tell where to operate? Muscle, tendon, nerve, ligament so to leave alone keep on meds ( I don't want to be on 17 meds, I am starting to get confused doing my weekly meds) I didn't have to do all these meds before I hurt my neck, before I got fibromylagia! Frustrating.

 

• Gastroenterology
• Had me do balloon holding to test my strength of my abdominal floor muscles-are ok
•  my fecal incontinence-to quit drinking pop..why didn't I think of this..I did for over a month all caffeine and all artificial sweetners....no luck

 

• ENT
• Chronic sinus infections and problems with my and teeth with my ears feeling like they were going to blow out- mostly my left side as if it was swimmers ear with headaches and I have had this for 8 years since the accident! The only thing new is the severity of the pressure in my ears and now the wetness in my ears
• Ordered a CAT scan since I haden't had one  in 3-4 years-all ok
•   The fluid drainage from my ears is probably caused     from my headaches. This one sounded to crazy to me!  The Pressure who the """ knows.

 

• Vascular Lab
• I thought I was going to have my upper extremeties done and when I got there my lower extremeties got hooked up. The tech even called my doctor to make sure he didn't want the upper half done as well since I was there and my primary said no.
• This wouldn't be the first time showing p for test where they only "half' tested an area that could have been tested the full area so I didn't have to come back another time a couple months down the road.
• I remember being with my primary care and asking to have my neck be checked out. My chiropractor thought I could have (therosaic outlet-sorry about the spelling) and my mother had had a stroke. (My chiropractor had even sent a letter to the Spine Center in regards to this and asked Dr " "' to get back with me, but he never did) My primary care said there was steps and channels to take first. If he just sent me there for my neck and he quit speaking. He set up the appointment for the vascular study-my lower half only come to find out!
• Memory Testing
• My cognative skills were declining and it was more than just for getting where you parked your car. I was actually getting confussed doing things, understanding things. This test was very different. I thought for sure I wasn't doing very well and was getting nervous since I couldn't get the lady to smile at all. This test came back as I am ok too-good thing to know, but I am not ok and something is going on in me and I need help and no one seems to be able to help me....
• Womens HealthEarly Menoupause done at 42, started at 32
• They suggested to go on the HRT patch instead of a pill. Talked with me about several issues and sent me to do a breast exam on my left side only-everything ok.
• Cancer Genetics-since it ran in the family but my chances are not that high of a percentage.

 

• Physical Therapy
• Iwas late and he was arrogant and actually told me there was nothing more he could do for me. If Doctor (the referring doctor) would have looked at doctors (the spine center doctor) notes. I felt this was a arrogant comment since I haven't been to a physical therapist since my accident 7-8 years previously. I had been followed up in the Spine Center all this time and I do wonder what the Spine Center notes say and should obtain them.  After talking with this therapist for a while he and I did decide he could show me some new exercises to do.  I was using my neck muscles incorrectly. He told me that it wasn't uncommon after an injury to learn to use your muscles differently/incorrectly to compensate for an injury.

 

• Others As well

I am sure many of you with any "invisible disease" can appreciate the above doctor vistis that got me no where after spending thousands of dollars. I know I wasn't ok so I made a decesion to go out of state for help to the Fibromylagia  and Fatigue Centers http://www.fibroandfatigue.com/ I am not working and my funds are running low so I hope to continue with this. I did my research and this is where I want to be.

I have frustration at the doctors that I have seen for 22 years yet I can see humor in it as well. I got scared not knowing where to turn to and made the decesion to go to the Fibro and Fatigue Center FFC myself with the suport of my doctor as well. As he said, I have had not much help with the medical community-it is a "treatment center" for FMS/CFIDS. HE said the success rate at a cancer center is greater so maybe this center will be greater for fibro.

I

 

 I know I said this but I wanted to say it again. When I was falling a sleep waiting for the doctor to come in to see me and complaining about this makes me know now about CFIDS.

This is what has my interest and passion for learning. CFS is another chronnic illness doctors have a hard time diagnosing. The Center for Disease Control has several interesting topics and doctors can go there and obtain college credits for learning about CFS and how to diagnose. Left untreated CFS can cause other medical problems.

 I was diagnosed with CFIDS by the FFC center. Through my blood work at the center, this is my weakest point.

My passion is to learn about Autoimmune diseaese as well

American Autoimmune is something I recently I stumbled across. My mothers sister has MS and Lupas which are autoimmune diseases. I have Fibromylagia, Chronic Fatigue, Raynauds, Allergis Rhinitis which are autoimmune diseases. Autoimmune  Thyroid Disease is interesting since the FFC center just put me on thyroid medicine and Autoimmune Inner Ear Disease is also interesting since I have such problems with my ears and mostly my left one.

http://www.aarda.org/

 

Hi everyone. I am just checking in.

 I go to the doctor Monday. Maybe he will tell me I am OK and / or I really do hurt all over. I did here back about the sleep test and I do havesleep apnea to a small degree. I am affraid that if I would have really got to go into a deeper sleep it may have been to a bigger degree. I'm not sure about the accuracy of those test. Have a great weekend!

Well, I got four of my five prescriptions for fibromyalgia and migraines filled yesterday.  By the time we got home I was hurting so bad.  I was a little bummed too because my husband waslooking at wheel chairs for me.  I didn't cry in front of him because I know he means well.  I think it scares him when I can hardly walk through the grocery store.  I used to always walk way ahead of him because I have long legs.  Now I have to keep reminding him to slow down.

 

Anyhow, I was hurting so bad I thought I would start by trying the percocet --the generic version.  My doctor told me to take one along with four Advil or ibuprofen or whatever I take. 

 

I was a little afraid to take it because I didn't know how I would react to it.  I know the low-lifes around town sell percocet on the street so I almost feel scummy taking it.  Well, it isn't as great a pain killer as I had hoped. :(  To top it of, I couldn't sleep (worse than my usual inability to sleep).  This surprised me since it said that it may cause drowsiness.   

 

At nearly midnight my head was still pounding and my hip was screaming and I was ready to cry.  So I popped a couple Advil PM and finally went to sleep.

 

This morning I still hurt but I am always bad in the morning.  I don't know if I should try another or not.  I am pretty disappointed with it, but maybe it is one of those things that takes time. 

 

I'll wait a few days to start the other meds.  The doctor said not to start them all at once  in case of an allergic reaction.  What she actually said was "If your hair turns green and falls out we'll need to be able to determine which pill is the cause".  She is pretty funny. :)  I think I'm going to like her.

Subject: This is beautiful ! Try not to cry.


Body: When you're down to nothing, God is up to something.
This is beautiful! Try not to cry.

She jumped up assoon as she saw the surgeon come out of the operating room. She said: "How is my little boy ? Is he going to be all right ? When can I see him ?" The surgeon said, "I'm sorry. We did all we could, but your boy didn't make it."
Sally said, "Why do little children get cancer ? Doesn't God care any more ? Where were you, God, when my son needed you ?"

The surgeon asked, "Would you like some time alone with your son ? One of the nurses will be out in a few minutes, before he's transported to the university." Sally asked the nurse to stay with her while she said good bye to son. She ran her fingers lovingly through his thick red curly hair. "Would you like a lock of his hair ?" the nurse asked. Sally nodded yes. The nurse cut a lock of the boy's hair, put it in a plastic bag and handed it to Sally. The mother said, "It was Jimmy's idea to donate his body to the University for Study. He said it might help somebody else. "I said no at first, but Jimmy said, 'Mom, I won't be using it after I die. Maybe it will help some other little boy spend one more day with his Mom." She went on, "My Jimmy had a heart of gold. Always thinking of someone else. Always wanting to help others if he could." Sally walked out of Children's Mercy Hospital for the last time, after spending most of the last six months there. She put the bag with Jimmy's belongings on the seat beside her in the car. The drive home was difficult. It was even harder to enter the empty house. She carried Jimmy's belongings, and the plastic bag with the lock of his hair to her son's room.She started placing the model cars and other personal things back in his room exactly where he had always kept them. She laid down across his bed and, hugging his pillow, cried herself to sleep.

It was around midnight when Sally awoke. Laying beside her on the bed was a folded letter.

The letter said:

"Dear Mom, I know you're going to miss me; but don't think that I will ever forget you, or stop loving you, just 'cause I'm not around to say"I Love You". I will always love you, Mom, even more with each day. Someday we will see each other again. Until then, if you want to adopt a little boy so you won't be so lonely, that's okay with me. He can have my room and old stuff to play with. But, if you decide to get a girl instead, she probably wouldn't like the same things us boys do. You'll have to buy her dolls and stuff girls like, you know. Don't be sad thinking about me. This really is a neat place. Grandma and Grandpa met me as soon as I got here and showed me around some, but it will take a long time to see everything. The angels are so cool. I love to watch them fly. And, you know what? Jesus doesn't look like any of his pictures. Yet, when I saw Him, I knew it was Him. Jesus himself took me to see GOD ! And guess what, Mom ? I got to sit on God's knee and talk to Him, like I was somebody important. That's when I told Him that I wanted to write you a letter, to tell you good bye and everything. But I already knew that wasn't allowed. Well, you know what Mom ? God handed me some paper and His own personal pen to write you this letter. I think Gabriel is the name of the angel who is going to drop this letter off to you. God said for me to give you the answer to one of the questions you asked Him 'Where was He when I needed him ?' "God said He was in the same place with me, as when His son Jesus was on the cross. He was right there, as He always is with all His children. Oh, by the way, Mom, no one else can see what I've written except you. To everyone else this is just a blank piece of paper. Isn't that cool ? I have to give God His pen back now He needs it to write some more names in the Book of Life. Tonight I get to sit at the table with Jesus for supper. I'm sure the food will be great. Oh, I almost forgot to tell you. I don't hurt anymore. The cancer is all gone. I'm glad because I couldn't stand that pain anymore and God couldn't stand to see me hurt so much, either. That's when He sent The Angel of Mercy to come get me. The Angel said I was a Special Delivery ! How about that ?

Signed with Love from God, Jesus & Me.


(Let's see Satan stop this one.) Take 60 seconds and repost this, within the hour, you will have caused a multitude of believers to pray to God for each other. Then sit back and feel the Holy Spirit work in your life for doing what you know God loves "When you're down to nothing, God is up to something."

Email this.

Title: This is beautiful ! Try not to cry.
Send this to 10 people in 2 minutes

and you will feel the Holy Spirit brightening your life in just an hour.

Well since yesterday I have been reading a book called "He came to Set the Captives Free".  In this book, it takes you in a journey through the spiritual warfare with satan and how to pray hedges of protection and HOW Christians are bound with generational demons and curses. I am about 60% though  the book and I am telling you it has CHANGED ME! It has taught me to have authority over the devil and WHY it is so important to know the word of God and to read it! If any of you have theopprotunity to get this book and read it, DO SO! Oh my gosh it will bring you to a higher level and totally flip your view on life as a Christian.

 

Me, mom , and dad went to Life Church in Mobile today for Sunday school and for worship services. MAN that church ROCKED! Funnies tthing I could not put that book down and I read it the whole trip over to Mobile and on the trip home. I of course did not take it inside. Dad was very resilient, so mom told me. He ws very standoffish in the new church  and it was so unlike him! I am not trying to confess he is bound but it seems as such! Mom had a BALL in praise and worship and man the Holy Spirit was so strong there -- not like the other church that dad still attends. GROWN MEN at this church were jumping and dancing in the spirit and it was so AWESOME! I had not felt that and been around people who love God and do not care what other think. I fit in I felt. I told my mom about it and RIGHT AWAY satan tried to use my mother  and said "Don't form an opinion and trust them " and I told her "Jesus is there and they are free in the spirit just as God wants us!"  She then hushed up and satan knew I was not going to let him win!

 

After having read this book as much as i have (because it is one you just have to FORCE yourself to put down), I have learned not to allow music, video games, television, literature, and even websites to be viewed by my eyes, ears, or heat anymore. I mean I am changing cause i will not allow satan to fester and try to let him demons in me. Spiritual warfare is a REAL thing! I also have an announcement -- I tired not to "jinx" myself at first but baby i have been DELIVERED from CIGARETTES  on Friday!!!!!! I am so happy that i could do cartwheels! I also gave up alcohol (wine, beer, coolers, liquer). I am giving myself 100% to God and not turning back! No flaking out and no men in my life. I prayed and if God wants Sam in my life HE will deal with him not me. I know God made marriage not divorce, but on the flip side Sam will have to rise and be delivered from all the demons he has in him. PTL I am saved and delivered! Love u all!

That "new" med is really an "old" med called Gabapentin which I think is really Naurotin, or something and I'm not quite sure if it's going to work or not. All it seems to do is make me even more tired than I already am.

Nothing will ever be perfect because that's just the way it is and... I wouldn't want perfect anyway.

I'm really trying here to get over this depression. Maybe the Lexapro just isn't working right.  Maybe this is why I'm so tired. Maybe the doctor has me on too many different meds.

I shouldn't be depressed. I shouldn't be tired. I shouldn't be sick. I'm tired of feeling like this. My plan is to live to 104. I have so many things that I want to do, things that I still want to learn, new things to try. How am I going to do this? My mind just races thinking of all of the things I used to take for granted and now want back.

Well..today is going to be a beautiful day. I think I'll go take a walk out to the back pasture and see some of the calves. They always cheer me up and I hear them "mooing" right now. Think positive and just be thankful! :)

   Today was not bad.  It was a fibro day, but I was determined not to let it control me today, and I won. Huzzah to me!  Well, it wasn't ALL me, I let God handle what I couldlet go of.  I got to satisfy my obsessive/compulsive side and cleaned my house, townhouse, 3 levels, and a ferret luxury highrise cage for 5.  Now I feel really relaxed.  I hate it when my house isn't the way I keep it when there's no one home but me.

   Triston, my grandson, 10 yrs. old, 1 of 4 boys, the oldest, called me today.  I love them all, but Triston is my heart.  He is in a place for children with emotional disabilities, temporarily, but he is in such good spirits for one so young and have gone through so much.

We finally were able to lose Karen.  I know there are hard feelings, I hope they won't turn into hostility on her part, and she starts something.  We're better than that, or anything that she were to say, and anyone who would hear it would know better, so it won't be us that looks stupid.

I know I have to take this one day at a time, but I can't help but worry about tomorrow.  This is my really big thing, I just can't accept this.  I still want my life back.  It doesn't even have to be the same.  In fact, I've learned alot myself since I've become sick.

   Now that I think about it, I have found skills that I didn't even know I had.  I am a great marketer, and apparently, as I've told, I can sing.  I found a goal, a dream, that I wanted to pursue, and now that I couldn't work, I had the time to do that.  So, out of that came the unique company, Pirates for Sail, that I now own.  So, I guess being sick isn't ALL bad....

Well I had a HUGE day. I called Mad Dill AFB, where my soon to be ex is stationed out of in the Naval Active Reserves, and talked to a Senior Chief there. He told me ALOT! Seems to be he had his marriage annulled, to his previous wife, in 2005 without her knowledge! The reason i called and asked abotu this was cause we went to Eglin AFB and tried to get my military ID and I couldn't case Rhonda was on his DEERS and according to the military they were still married! SO I called someone in the federal department of personnell (aka DEERS) and they transferred me to the DoD, and then told me what I need to be put on his DEERS paperwork. And, since i have POA legally over him, I do not need him there. In a way I feel bad and like it was sneeky but I am trying to get some kind of compensation and benefits. I have NONE as it stands and it sucks that i am having to depend on his mother for everything! She has been really gracious in buying my medication and everything but I cannot expect this of her for ever! I mean I am trying to take care of me and look out for ME! I do not wanna hurt Sam, but in the next breath what he is pulling ain't right either! Please tell me was this the right thing to do?

   Well, this is my first entry into my diary.  I had actually forgotton about this site.  I wish I had remembered it earler, I really could have used the support.

   I don't have anything profound to say today.   I lost my driver's license again last week.  Second time this year.  Never told my husband, so he calls me while I'm in the middle of getting my picture taken at the DMV.  I told I would call him back.

 In a fibro fog for most of the time, I never noticed that my tags were expired, don't remember getting anything in the mail, and I forgot to get my emissions.  Anyway, had to pay $100.50 fine. Then, I had to go to the doctor, the rheumatologist.  I really like her.  I would highly recommend her if you need a doctor in Maryland.  We talked.  I told her I was miserable.  She asked me what changed.  She said last time I was there, about 2 months ago, I was happy and doing well.  I told her it was a matter of attitude, and right now mine wasn't in fight mode.  I just wanted to go home and go to bed. 

   Then there was rehearsal.  And the drama!  I think that's over now.  We are starting to mesh, but we just have too many people.  I know that running this company is really stressful, and that stress brings on the fibro flares, but if I didn't do it, what would I do?  I can't keep a real job because I would miss 3 to 4 days a week.  I need something to identify me as me.

 

Last night I just started hurting so bad, I couldn't sleep so I am so tired and still hurting. My head hurt, I am nauseous and have a migraine. It hurts my shoulders and neck too muchto lay down but it hurts my head too much to sit up. I need to take my daughter lunch money do some grocery shopping and get dog food. God I just want to find a deep, dark hole too crawl in right now and not come out till I am over this flare up.

I have been having constant pain for years now. I hate to complain so I don't; until recently. I find myself complaining all the time. I don't like it.

 I have gone to the doctorseveral times over the last few years and they always want to run expensive test that I can't or won't afford. I have had blood work done a few times and it has always come back ok. They give me anti-inflamitories that use to help. I only took them periodicly when I couldn't get a goodnights sleep. Now my pain is so bad that the medicine isn't doing the job. It helps a little.

I say that my pain is bad but I think it is just all over (low back, feet, sholders, wrist and hips) and seems to be there all the time. On a scale from 1 - 10 I would say it is between 3.75 to 4.75? I am tired all the time and don't have the energy to do the things I enjoy or for that matter the things I don't like to do (clean house, LOL). When I take on cleaning I can't hardly move the next day. Then my hubby says, "you need to workout and then you would be able to do more around the house without it wiping you out." He thinks it is only because I am out of shape.

I love to go to the gym. I know this is going to sound crazy but I ache even when I am on the treadmill. My sholders burn and feel like they are on fire.

 I think I will go buy a swimsuit so I can at least go swim and maybe get in the hot tub. I hate the thought of me in a swim suit. I have gained 40 lbs. in the last year. YUCK!!!!

I went to the doctor Monday. He redid my blood work. He said he was going to have a complete arthritis panal done. I asked him about Fibrom--- he told thats what they call it when they can't find anything else.

Oh well, I will report back tomorrow if I can.

Well I finished making all the fliers and information sheets for my FM support group. I decided to have them on Wednesdays at 11:00 AM and maybe another one in the afternoon or evening time.  Dad helped me with some of it --I am gonna try later while I am out and about to put the fliers up and all that. I did not go to church yesterday because I was so hurt still. I do FORGIVE them for being so unbelievably mean -- but i still fell like the sting is there.

My new challenge is getting that cussed Rheumatologist's office to call in my medication! I am running low on my pain medication, my Plaquenil, and my IBS medication.  I called them FRIDAY and told them i will be needing them VERY SOON -- but that obviously did not make a difference. Sheesh!  I do not understand these doctor offices. When i worked in the medical field I MADE SURE that a patient got what they needed and if I did not have the time to call in their medication I got someone else to for me. WHY in the world can it not be like that? Frickin doctors!

Well i have my house work cut out for me. I just wanted to update my friends and family here. I love you and God bless your day!

This last week was one of the worst for me. My pain was so intense, I told  my fiance that I just wanted to go "home" to God.  Between this pain and the depression thatset in, I didn't want to be in this ravaged body any longer. Thank God this man that I love with my heart and soul is so very loving and caring. He always gets me through these bad times. He's so patient and trys to help me with so many things.

I went to the doctor on Friday. My doctor is very supportive with all of my ailments and put me on a different fibro pain med. I just got off the Lyrica after trying it out for  the past two weeks. This is probably a good med, but just not for me. I had such bad migraines from it, that I just had to stop taking it. We'll see if the new one works better! 

Well today has been an interesting day. I tried to go to the DMV in Bay Minette and get my AL driver's license and that was a flop. They said I had to go to Foley which was a hour in theother direction thank you very much! 

I contacted the National Fibromyalgia Association to get my starter kit for the support group. I am really trying to be proactive about getting a support group started here in the Southern part of Alabama.  I think the more awareness and people know about FM the more we will diminish the stereotypes of this condition is all in our heads and the MANY others ones we have ALL hears a dozen or so times in the past. I have SLE as well but I think I am more proactive for FM since i have had it longer and my SLE is controlled by the Plaquenil.  I really want to help all my friends with FM out there so if you are game let me know!  

To bring this diary up to speed...  Since about the first of the year, I was having frequent "attacks" that I thought were related to my hypoglycemia.  Out of the blue, my heartwould start pounding, my pulse would race, and I'd feel all shaky and weak.  It was pretty much the same symptoms I experience when my blood sugar falls.  However, when I tested my levels, they were always within normal range.

A few weeks ago, these attacks starting happening several times a day and I started wondering if perhaps I had developed an anxiety disorder.  I finally went to the doctor and was started on two different meds for anxiety... Clonazepam and Effexor.  Still, something just didn't make sense.  I'd had some issue with anxiety for years, but nothing like this.  What's more, I didn't really have anything going on that would justify my being "anxious."  I started taking the time to really evaluate what was going on when these "attacks" happened and not even two days after seeing the doctor, I was onto a new hypothesis.

Typically when I feel anxious, I just take a few deep breaths and focus on something positive.  Sounds simple, but it really works!  However, when I tried to do that, I couldn't get enough air.  I had a nasty respiratory virus over Christmas and had a bit of a residual cough, but never felt it was a part of the problem.  My mother is a respiratory therapist and I had her give my lungs a good listen and she told me I had some wheezing and wasn't moving air well.  I made another appointment with my doctor and, lo and behold, I had bronchitis!  The "attacks" were most likely bronchial spasms (thus the wheezing) much like those caused by asthma.  Having never had asthma, I had no clue what was going on!  Oh... and I also had an ear infection, but with a headache every day of my life, I probably didn't even notice the most tell-tale symptom.

But since the intial doctor visit fell under the heading of probable anxiety attacks, I've been set up with a psychiatrist to evaluate my need for further therapy.  After learning that I had bronchitis I was tempted to just cancel, but I do still have some anxiety issues, so it may be worth it to see what she has to say.  I will say now that I'm going to start pulling my hair out and throwing things if she starts in that direction of telling me all of my symptoms are psychosomatic!  "Improve your physical well-being by improving your mental attitude."  That is such CRAP!  At some of the happiest times of my life I was sick as a dog and at some of the most stressful, worst times of my life I enjoyed perfect health.  But try explaining that to the doctors!  If it doesn't fit with their diagnosis, then I must be lying about my experience in an effort to hide the fact that I'm suffering from extreme mental illness, ha, ha.

 

I'm new to MDJ, having only discovered it a few days ago.  I've been blogging for a couple of years at wordpress, but have found very few in that community who understand my struggles.  I'm not sure I'm ready to give up my old blog, but willing to try and keep up with both until I can decide which site I like best.

The past week has been bad.  The stress of my father in law being hospitalized and weather changes have caused a severe flare and I've been in bed this week.  The Cymbalta and Ultracet haveworked so well until the last couple of months.  I don't know if it's just the winter months causing the loss of effectiveness, or just time for another med change.

Today seems to be another good day, they have been few and far between. I really haven't been feeling right,I'm dizzy (i think from a med I am taking),and have little energy. There are so manythings I need to be doing but this lack of energy just keeps me down. I need to get up and go.Certainly clean the house a bit,take a shower,especially with my peeing problem. My Dad has beengone now for over 6 months, I can't say it is as painful as it once was,it is nolonger like a knife sticking in my heart,and I can go a few days without crying, I try to remember the good times and what a fabulous life he had and how his kids and grandsons adorned him and looked up to him and how for 53 years he had the love of a good woman-which will last till the day she is placed in the ground next to him and in the afterlife they will roam together forever,united.

For the last couple of months the pain just never seems to go away.  It seems to appear in so many places at one time.  I just wished it would stop so I can go on with my life

The longer I have fibromyalgia, the longer I see how much it is affecting my life.  I'm no longer that spontaneous, bring it on kind of person I used to be.  Some days I struggling throughmy busy day and I'll a moment with a heavy sigh.  That sigh is the weight of the world on me as I take a moment to tune in how badly I truly feel physically.  My shoulders, neck, upper back are rigid.  I can't feel half of my right hand.  There is a nerve pinching some where so I started taking prednisone again to see if inflammation is the problem.  The christmas music is like nails on a chalkboard this year.  It just reminds me of all the things I haven't gotten done.  I still have a bit of shopping to do but work just popped up and I have a file to be worked and due by the 24th.  Yep that would be xmas eve.  I have a final tomorrow in an upper level crime class and a final on thursday in a senior level ethics class.  No pressure there. Then I have these little munchkins who need me to spend the fun time.  It just gets so hard to prioritize.

 I screwed it up somewhere this week as I've just been too tired.  Hurting a bit too much.  Migrainal and costochondritis around rib cage.  Legs are hurting and feet are buzzing.  My right leg is hurting so badly at nite that it is waking me up which is making me more tired which makes the fibro worse and makes the leg hurt worse and so on and so on.

I'm going to take one day at a time and tommorrow I need to print and send 50 christmas cards.  Take a 3 and 1/2 hour digital crime final.  It would be nice if I could get to the sprint store and get the phones I need for xmas.  I hate the sprint store.  I hate the sprint people.  They better not be wearing santa hats.  I'm not in the mood for that cheery xmas let me sell you a phone that will break in a month pitch.

Worst part is hubby must be there and he is electronically challenged and will make this process ten times harder than it should be.  I know what we need and will use but every new button brings a world of wonder to him.  He is like Homer Simpson in a donut shop lol.