Ankylosing Spondylitis Destruction Of My Life

When I was 16 I was first diagnosed with Crohn’s Disease when I was in horrible stomach pain and kept losing blood in my stool everyday for two years. A doctor finally found out that I had crohn’s disease and I spent the next two years on prednisone until I stopped losing blood. Many people did not understand when they wanted to go to social events I could not go from pain and no energy from losing too much blood. I finally learned how to control the disease with diet and keeping stress down and letting things blow off my back. Fast forward my life ten years at 24 I had become a truck driver and was finally making the kind of money I could purchase a house, quality vehicles, and be husband material. As in I could provide for the ones I loved or wanted to love. At 26 I went to sleep and woke up with a little pain in my back. Thirty days later I could not walk because my left hip was just radiating pain. To try and stand on my leg or put weight on my leg would send me to the ground in pain. My right arm was frozen so it would not move at the elbow and was locked. Trying to move my arm would send pain radiating down my body to send me to my knees.

I quit my job and came home trying to figure out what was wrong with my body. I spent 45 days in the hospital learning I had Ankylosing Spondylitous on top of the Crohn’s disease. I spent the next four years using a cane to walk because my left hip was too damaged. I was put on disability and told they were not sure what would happen next to my body. My doctor prescribed me the drug that you sit in the hospital with a IV drip. The medicine felt like someone took your stomach opened it up dumped battery acid in their and closed it. After the medicine I would limp back home and then sleep the rest of the day because the stomach pain was so bad my eyes could not stay open and my body wanted to shut down because the pain between my stomach and back was more than my body could handle. On the third dose of the medicine (taken one dose per month) my body rejected the medicine having convulsions and I thought I was dead. My body shut off and the normal thinking was gone. My brain was too busy trying to keep control of things like blood pressure, heart rate, oxygen level, ect. I remember I came home later after my body was under control. Still unable to walk and just thought Thank God I am still alive somehow someway I have no idea how.

Next my doctor prescribed Humira a Miracle drug in itself. After a year of injections I regained my ability to walk with the shots and pain pills. Oh my God what a relief to be able to wash my body with my hands/arms that function like a human being again. I decided to go to college because I did not want to accept my disability and wanted to make my money not accepting a hand out. Just way I was raised. I finished a Bachelors Degree in Business to try and get back on my feet. Guess what hmm No Business in the world wants me because I have been disabled and have been unemployed for 6 years because of losing ability to walk. Totally beyond my control; however, still counted against me I guess.

Now I have been removed from disability because of having a degree after dozens and dozens of no return phone calls for jobs. Sad I worked 12 years prior to this without ever calling off any job I had no matter what and working double/triple overtime. What to do with my life now. I know that now my days without Humira are limited which means my ability to walk, bath, function as a human, and sleep are limited. I still remember when I could not hold a quart of milk in my hand because it would hurt my arm so bad from the weight on the elbow joint I would drop it. I was not able to use actual glassware because my hands shake and drop stuff so I use plastic instead.

Humira was a blessing to me and now the insurance companies will not even touch me for less then $600 a month with no coverage for the first two years I am paying them. What a great medical system we have where you are caught in the loop because of life that is out of your control. I know not being able to sleep for 3-4 days straight from pain all over my body and hallucinating from sleep deprivation is not a place I am going back to. My hate for God just pours through my soul like blood. How can one person have to battle two life altering diseases. No human can battle two diseases inside that feed each other gasoline to ignite the flame.

I now look at the road that I am supposed to go down; however, this time around God can have his soul back or whatever it is because I don’t want it anymore. I have lost my will to live, my faith, my happiness, and everything that I have held onto for over thirty four years. I think about what my family will do once I am not here. Will they hate me? Will they understand? Sometimes pain is more then the human body can withstand the mind, body, and soul just searches for relief no matter the cost. All I ever wanted in this life was to be able to repair peoples vehicles, buy a house, and have a family. Now those things are gone with the wind as this disease is going to take me down this time. This disease can take me down; however, I can take me out to end the misery and pain.

I look at my life and all the times I tried so hard to hold onto my dreams and continue to make my dreams a reality. It was in vain and I now look back at the day I almost lost my life in the hospital from the Remicade and wonder if that would have been better to have gone out that way. Now my only wish is I want my ashes to return back to Ohio where I came from and spread out on the streets where I used to play and run around as a kid. I don’t know how or when I crossed the thoughts of hating and blaming god for the hand I was dealt in this life. However, now their is no turning back because I look at this life and think that if this life is any representation of heaven then it is no place I want to be and part of me believes everything that I was fed about God is all bullshit anyway and the only thing on the other side is dirt and grass. Who knows who cares.

Sorry for such a long post just someday hopefully their will be more public eye on this condition of ankylosing spondylitous and people will understand that it is not just a form of arthritis. I would have rather have been dealt cancer because at least then you get to die instead of just being tortured until you go crazy or the pain gives you a heart attack.

2 thoughts on “Ankylosing Spondylitis Destruction Of My Life”

  1. You poor soul. I feel for you.

    I am 59 and have been in chronic pain for the last 30 years.

    I too educated myself only to have to leave s good job because of my pain.

    My only living family is my brother. He thinks I am exaggerating my pain and will not speak to me. I have never asked him for anything.

    Like you I pretty much believe the universe hates me. God must be for other people.

    I know whats it’s like to lie in bed, for weeks at a time, with no pain relief.

    My family doctor sometimes gives me nedication. When she is in a bad mood, which is most of the time, I don’t get anything.

    People who see me treat me as though I am an idiot as soon as they see the walker or wheelchair.

    I have no answers but I do understand. Maybe we will meet on the other side.

    With sympathy and respect, Ruth

    1. I have a’s in my lower lumbar spine and the extreme pain and minimal mobility are a constant..thats what a chronic condition means.when i was 16 i was having severe back spasams..i remrmber now how the doctor told me “either you wear this back brace for a year”.”or you will have back problems the rest of your life”…life affirming words for sure!anyway in2004 i wad diagnosed with “a’s…..long story vicious cycle of chronic pain..clinical depression…fatigue…all sorts of pharmacutical delights…i am also an i got a triple whammy.also most of my family think im full of shit,or atleast that it cant be that bad.. and the frustration of that alone is terrible.i was on and off Humira for about ten years.It did help with the pain…..alot i guess..but not with mobility but in hindsight i guess it was a mirical drug. I am currently not on it cause in all reality i feel like i deserve to suffer..and now you have to get it through a “special pharmacy”as opposed to a rgular chain like cvs. Ive expeirienced many embarrising beauracratic red tape misyakes delaying the was mail ordered to me at the time which was pretty convienant at the time.anyway life in chronic pain sucks.Im 41 right now a broken soul.Ive been on the strongest painkillers..muscle relaxers..and they do work.. for short periods of time..then its never enough for me.Being an alcoholic,depressed,AS patient….is like living in hell.It affects my sex name it..chronic pain..”chronic” being key word for me here. Which means..longterm,persistant,..basicly for life!!. I do still have hope and i hope at the bitter old age of 41 can give it just one more shot!!!..for all you souls out there”suffering”…. i feel your pain..literaly speaking.right now im on suboxom which dont do shit for my type of pain.i choose this route for now..because im tired of getting tolerant to the strongest of opiates..within days. And thiking that theese cocktails of sedatives.. painkillers…muscle relaxers…and tranqulizers…will work for me…”longterm”..but who knows..ilk be back probably..

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