Monday, October 10, 2011

Living with a Chronic Illness

I was diagnosed with Fibromyalgia a little over a year ago along with having 4 protruding discs ( two in my neck and two in my lower back ), Degenerative Disc Disease, IBS, Diverticulitis, Myofascial Pain Syndrome, Tinnitis, Chronic Migraines and my most recent diagnosis, Interstitial Cystitis which is a painful bladder disease. I think that's it, but I lose count of everything I have at times. There is no cure for the Fibro or the IC (Interstitial Cystitis). I am still learning about the Fibro and the IC....so much to learn still and just starting some treatments on the IC. Every day is frustrating living in constant pain. Most days I can hide it and there are days like this weekend when I just can't hide it because it's all too painful. On those days I get very little sleep because the pain keeps me awake or I can't get comfortable. One would think with the pain meds I take that it would deaden the pain. It only takes the edge off slightly which is better than nothing.

Most don't understand the two major illnesses that I have...Fibro and IC. Some have heard of it but then see those stupid commercials like the one for Cymbalta that shows a person before they take the drug and then after. Later in the commercial they are all happy and stating that they got their life back.....that is a bunch of BS and I really dislike those commercials so much. That's not the way it is at all. I was on Cymbalta, but I didn't notice any change so my Dr. put me on another drug which helps with the depression, but not with the pain.

There are days when it takes me hours to just get out of bed because I ache all over so much and the littlest thing like putting on pants and going down the stairs is the hardest and most exhausting thing to do. Once I get downstairs I have to take my meds and hope that somehow one of them will help in some way. After I wake up I go back up the stairs and proceed to take my shower. The shower feels good, but some days it's so exhausting to just wash my hair. By the time I get out of bed, get the kids off to school and then feel good enough to take a shower it can be 12-2pm. Just try to imagine that.......it use to only take me an hour to do all of that just a few years ago. The rest of the day is spent just trying to get what chores I can done before my husband comes home. I do my best to do this so he is not overwhelmed once he walks through the door after a long day at work.

I was denied once already for disability. The unfortunate thing, among many, about having Fibro and IC is that Disability does not always consider them a disability! Seriously! How can they not after just reading a short version of what my day is like. I am a member of a couple Fibro groups on Facebook and all of our stories are all very similar with the pain we live with every day. Some have been able to get disability and others have been fighting for years. If your application isn't worded according to their expectations then you are denied. It takes a lot of support from Dr's and documentation to get accepted the first time applying. I have to start all over again now that I have a newer more recent diagnosis. I'm working on how to word it correctly and trying to do my homework on that process so I don't get denied again. Thankfully I have a Urologist who offered to document meticulously and write a personal letter to Social Security stating that I am unable to work at a job due to my limitations.  If I do get denied again then I will have to get a Social Security lawyer and fight to have it changed.

In the meantime, we are hardly making it financially and this is due to my disabilities. I feel very responsible for my lack of employment and see what it's doing to our family. I was once able to work over 50 hours on some weeks and bring in a decent income. I was a single parent for close to 10 years and didn't struggle even half as much as we are now. Financial stress causes a lot of stress on my body which doesn't help with trying to manage the pain.

It's hard having an illness that most people don't understand well enough. With a lot of diseases you look sick, but with Fibro and IC it's different which makes it difficult for others to understand. I may look ok on the outside and appear well, but most days I am holding back the pain I am in. Before judging someone with a chronic illness take the time to research it and have an understanding of what it is. The more education of these type of illnesses may lead to more research and maybe someday a cure. Below I have provided a couple links that help explain the two illnesses that I have. Take a moment and check it out.

http://fmaware.org/site/PageServerb3b4.html?pagename=fibromyalgia_symptoms

http://www.ic-network.com/whatisinterstitialcystitis/#what

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