It's very interesting if they gave it a try. Fibromyalgia is an autoimmune disease. Your body likes to destroy itself!
I am a very independent woman. I always have been and I probably always will be. I don't like the feeling of making someone change their plans to be with me while I can do it myself. My mother is one that has always offered to go but she asks too many questions ( bless her heart) and I like to process the information my own way. She goes to the doctors for everything... I do not. I'm not saying one is right or one is wrong it just that we do things differently.
The second reason is... I don't like to complain about my pain in fear I might look like a hypochondriac so I try to not say much. Nobody wants to be with a crybaby so I try not to as often as possible.
The third and most important reason to me is........ There are thousands of people that have it a lot worse than I. People fighting cancer, people that are waiting for transplants, parents that have children diagnosed with many horrible diseases these days. There are so many things out there that would be so much worse for me to have. I guess why I thought that I would write this is, because it does affect the quality of my life and others around me and I sometimes do great and plow through it and other times I cry until I can't cry any longer. It's painful and debilitating. It consumes my everyday for weeks at a time and then sometimes it sleeps and doesn't rear it's ugly head as much.
For the last 6 weeks it has been HELL and I do mean HELL!!!! I do what I can to stay afloat. I just needed to say that and now I will finish this blog and whine for a few more minutes and then when I am done I will feel better that I got it off my chest and tomorrow will be another day. Hopefully better! Either way it will be better for the fact that I wrote my feelings down and there won't be a reason to talk about it anymore!!!!!
Some close coworkers of mine know when I am hurting without me saying a word.
They will ask me how I feel and I feel close enough to them to say "I feel like hell but thanks for asking" and then we just laugh and go back to work.
I'm stubborn at times ... my mom will ask me why I don't take the pain medicine the Dr. gave me and I tell her because I have to fight through most of it. If I start medicating myself now then I will need more and more when the pain worsens and I don't want to cross that bridge. I try to make my month worth of pain meds last for 6 months or so. The addiction possibilities are frightening.
I want my family to know that I now have limits . I can't do what I did three years ago. I don't want people to feel sorry for me because what good is that going to do, for anyone. Most of all, I don't want pitty!!!!! I am still going to feel this same way, same fatigue, same pain, same depression that follows it because I remember what I used to accomplish. It pretty much sucks now! Lets face it, depression gets you no where!
I want to SCREAM.... that's what I really want to do the most!!!!! I hate the diagnosis, I hate the word Fibromyalgia. Why couldn't it be something else!
This is what I think about the disease.
Too many times, not always, but too many times I have seen lazy, lazy people say "Oh, I can't do that because I have FIBRO". I can't work, I can't get off the couch etc. Wha, wha, wha... There are legitimate people out there but a few ruin it for the rest of us!
Other times I will go on a Fibro forum and their are those that list every freaking symptom or diagnosis they have. I wouldn't be surprised if they had listed their hang nail problems.
I am a very factual person that centers my life around facts and the fact that they do not know what causes this or they have no cure is a fact that I can't deal with!!!! It feels like to me the diagnosis is like the doctors saying " sorry we don't know what is wrong, we can see by your test results there is something wrong but we don't know what it is so we will throw you in with those Fibro people over there in the corner (the ones wailing and lashing about). It really does seem like HELL at times!!!!
They say that a major big emotional event can trigger this disease. That seems weird to me but I will say that is about the time that some of the symptoms started.
1989 was the year that my sweet son Adam at the age of 5 had to go in for emergency Kidney surgery to remove his nearly ruptured kidney before the toxins could kill him. Letting my little boy go with the nurses was the hardest thing I have ever had to do. I was 5 months pregnant with my 4th baby Kylee. I slept up at the hospital every night so I could be there with my little boy.
A month later my Grandpa Galbraith died and only a month after that his wife, Maxine Galbraith was diagnosed with Pancreatic cancer. We knew we didn't have long to spend time with her. I went into premature labor in December but was able to hold off until January 4th, 1990 and gave birth by C-section to our beautiful Kylee. In February, my Grandma got to hold her once and said how beautiful she was. Then my Grandma Galbraith died a day later only 3 months after being diagnosed.
One month later on March 10, 1990 my sweet sisters oldest daughter was killed while riding her bike and a 16 yr old girl hit her with her car. Heather Marie Strong was only 10 years old. I will write more about that at another time. She and her family deserve more than a few sentences.
I had just gotten promoted at work to train all the new employees coming in. I had a class room of about thirty and I loved that job! Within a week I knew that my body was wearing down fast and it was all I could do to go to work, take care of a 4 month old baby and deal with all the emotions of what happened in the last 8 months. It was the last day of training when I was doing evaluations on the new employees and all I could do is stare at the computer, I couldn't get myself to talk or signal that I needed help. It's like I had just frozen in that position. It seemed like forever but the poor new employee eventually noticed and went and got help.
My neighbor came and got me to my doctors and my spleen was really enlarged, all my reflexes were hyperextended . I found out that I had had Mono that was out of control and now I was testing for very high extream readings of Epstein Barr. They sent me home, where I stayed for about 4 months unable to do anything but shower and lay back down. I gained 40 pounds that year from not being able to do anything at first, then eventually being able to go back part time to work. Grandma Banta helped me so much with Kylee. She had her probably more then I did that first year!
I found out what Epstein Barr was and learned to deal with it . There are good days and bad days. I could do certain things that seemed to make a difference. When it was really bad I would go in and get my blood checked knowing the whole time that my levels would be high. The one great thing about Epstein Barr is that the blood tests tell you how you are doing or if it is in remission . When the levels were high I would go in and get a vitamin B12 shot go get a shot of wheat grass and sleep all of Saturday and Sunday. I pretty much had it handled for 10 years. Only at times would it get out of control.
2008 I started feeling really run down so I would go and get my levels checked and they would come back a little low but nothing that would cause me to feel this bad. Within 6 months I could see a huge difference in what I was able to do in the day before I was completely exhausted.
My blood levels were no longer consistant with how I was feeling. I expected my levels to be sky high.
I started losing my memory and would experience panic attacks at times. There were several times I would head to the store and suddenly I couldn't figure out what to do. My brain was not working to tell me to do the exact same things that I had done so many times before.
I couldn't remember where the bread or milk was or plan a meal. It was very frightening and I would have to call my husband to walk me through it. If I couldn't reach him I would just have to go home. It was if the brain was not giving signals. I used to like going to the grocery store but it was probably two years that I struggled going and actually coming home with the right items.
Sometimes picking out my clothes to wear is too difficult. Some days wearing tennis shoes hurts because they are too heavy. It feels like I have cinder blocks around my feet.
I think that it was the summer of 2009 that I was going to have 6 weeks off from work. I was soooo excited to have time off to clean and organize or do anything I wanted to do but work.
About a month before my vacation I had really strange symptoms again. I was getting electrical shocks all through my body. One second it would literally shock me in the leg and then it would shock me in the ear then somewhere else. It would go non stop for hours and some of the shocks were very painful. The fatigue was worse then it ever was.
There were times that I could not lift my arms high enough to brush my hair after getting out of the shower. All my joints started hurting. I quickly became aware of where i had joints!!!!! It was very painful if someone leaned on me or touched my shoulders. It hurt horribly bad. I was painful to wrestle around with my boys like we used to. Someone poking me in the back with their finger would bring tears because of the pain.
My six week vacation from work was consumed with extreme pain, tightened Achilles tendon in the left foot, both arches had dropped suddenly in my feet to the point that I could not walk on them. The podiatrist suggested that we may need to clip the back of my Achilles tendon. It would have been a long recovery and wow, I am so glad that I didn't do that.
Both ears started having a really loud static noise constantly. It sounds just like a radio that is not on the station. The bright sun started to burn my eyes , where it never had before.
Everything that I looked forward to just passed me by because I was exhausted. I just sat in the recliner and slept and slept and slept and looked out the window.
I started seeing doctors because I knew something had to be wrong. They suspected M.S. the symptoms are exactly the same. They did MRI's, CAT scans Nuclear medicine scans, xrays, numerous blood tests and sent me to almost every doctor known to man. One Dr. said I had Multiple Schlorosis but the scan came back that I did not have lesions on my brain. He would wait a while to do the spinal tap. He didn't want me to go through that. Ah, been there, done that, not a big deal!!! They tested me for bone cancer with the nuclear medicine thingy... that came back that I had deterioration in my joints on both sides in all the joints except my hips. Suprisingly they were good! They couldn't figure out why that was happening but it was sending up red flags! They referred me to Rheumatologist with a wait of 3 months. That BUTT never even took the xrays out of the envelope and was so rude!!! I felt healed just leaving her office!!!!
After testing for anything from Lupus to ALS to you name it , they then tell you that you have Fibromyalgia. It feels like it leaves you hanging with out an answer. I don't understand fully why I don't like this diagnosis I just dont!!!!!! Why couldn't a damn TIC have bitten me instead!!! Everyone knows what LYME disease is!!!!
It was about 8 weeks of pure hell until the Cymbalta kicked in and I no longer felt someone constantly shocking me. The shocks are always there but they are much smaller and you just learn to live with it.
The arches to my feet are no longer flat!!!!! Who knows why? But I will take it. The tendon also released when the arches raised back up!
The static in my ears (especially my left is always there but seems to get louder when I am overly tired.) As long as people are around or I have the T.V. on it doesn't really bother me. I just wish my brain could find a channel so I could hear more than just static!!!
I can't sit for more then a few minutes because when I get up it hurts really bad and I look crippled walking around until I can get my muscles to warm and stretch.
That is why I get really fidgety when I sit and would prefer to stand. Unless I have zero energy I will chose to stand.
I have about 4 hours of hard work in me a day, the rest of the day I need to do more sitting down activities. I schedule my most difficult activities in the morning. There are some mornings that I really, really, really can not move out of bed. My legs stiffen up and I can't move from that position. I have to take a hot bath in order for my muscles to relax. Then I can get dressed and get to work.
Sometimes I can not hold a pencil or a fork because it hurts too bad and they are too heavy!!! I know it sounds stupid but it is true.
I have learned that the more I move and the more active I stay the better off I feel!!! When I get something like the flu I am better off still moving around as much as possible. Laying down too much is the worst thing I could do.
I don't like the "brain fog" part. This is the scariest part for me and it makes me worry what the future could bring. This happens quite often and I find myself not remembering how to do the simplest things. Things that I have done thousand times before.
For example reading instructions on something, I will read and reread them over and over but I can't get my brain to move onto the next step. I will find myself in this situation sometimes at work trying to fill out reports or observations. I just go BLANK and can't get to step one. I have had to leave my self notes at work for the days that it gets really bad. Sometimes filling out my timecard can be too difficult and I have to ask for help!!!! I hate this!!!
I have found myself just staring at my wallet trying to figure out what I give to the cashier. I know that I am looking in there for a reason but I can't focus on why or which card.
Someday's it's like you know how to do the survival skills like brushing my teeth and doing my hair and makeup and most of the time I can do anything but when the thing they call "brain fog" sets in it's different. If someone asked you to plan something or ask you to give your opinion on something I couldn't!!!! You can't visualize what needs to happen. I have difficulty looking at the details. I find myself having to follow everyone else's lead at times. Other times I am just fine.
Sometimes my daughter gets frustrated with me about not making decisions but the truth of the matter is... sometimes I can't so I come across indecisive!
I used to love stormy weather!!! It was my favorite thing in the world!!!! Now I can know when a storm is coming in I swear before the weather man does. ( prob not but it seems like it)
I had to go to the Doctors for the first time in a while about the Fibro. I told him that for the last two months I have been in the worst pain again and can't shake it like I usually can. He said that he has had more appointments from his patients with Fibro lately then ever before. He said they are all being affected by the weather. It has been so bad that I now have had to resort to take one pain med a day but hopefully that won't last long. The whole dependency thing scares me and I don't want to be so doped up that I miss out on life. That's not living.
I have lost the feeling in the right side of my face. In the morning I can feel it but about 4-5 hours into the day I get tired and my cheek goes numb!!!! They know I have not had a stroke!!! That's always good.
My daughter and my friend have noticed that when I am spent, I have started talking a different way. I guess I hold my mouth in a funky way!!!! They say I curl my lips over my teeth like I have dentures!!!! Ha, Ha, Ha, Ha I'm a freak!!!
I now have learned to give myself my own Vit B12 shots weekly in my big ole rear. I have decided that when I am feeling good (which is most of the time) they really help. But when I feel horrible (like the last two months) they don't do squat!!!!!!
BTW if you see me at the store anytime and I have a really stupid look on my face like I don't know what in the hell I'm doing? Feel free to pass me by or lead me out to my car! No, I'm not stoned or drugged out I promise!!!!
If I have known you for years( Brenda) and really, really like you and then when I run into you and I don't acknowledge who you are... I am sorry! I couldn't even figure out why I was on that isle let alone who you were. Then when I started coming out of the fog I remembered seeing you at the store and remembered your name, where we worked together and why i liked you so much!!!!! I am sorry for that day.
When I miss activities or events or have to cancel sometimes, I am truly sorry. My body just stops and won't give me anymore and then of course the emotions kick in because I feel like a giant loser and have let everyone down. I promise on those days that I feel great ( in comparison) I will give you everything I have to hopefully make up for lost time.
When I am walking in front of you and going too slow you can either...
A. Be patient it doesn't take me long to warm up and get moving.
B. Learn to be faster and walk in front of me instead of getting stuck behind me.
C. Yell "get the hell out of my way Jen or I will kick you!!!"
WORDs OF WARNING........ Because there is this loud static in my ears I may not hear you so please say it twice before you kick me. Also, because of the so called "Fibro Fog" it might take me a minute to register what you just said to me so then you might have to refer back to letter A. Be Patient
I love you all, pray for you all and just think, in the here after, we won't have to put up with such crap!!!!
I am officially done with my whining and moaning and bitchin!!!!!!!! Good Night!!!
