UGH!
Three years ago I started out of the running gate full force & ready to take control of my health. Today I'm in a place where I'm just a tad bit done with getting hardly anywhere at all...I've spent TONS of money,tried LOADS of meds and changed my diet drastically. Now we're 2 credit cards in debt after paying off thousands of debt previous and running into a 3rd. It's a vicous circle. There are days when I feel like no one else could handle this like I have and others where I know no one really wants to be around me and deal with me anymore. I have enormous guilt over it all...but how much can one apologize for something they are trying so hard to beat?
Like many other FMS people,I am SUPER sensitive to meds. I have not been able to tolerate Cymbalta or Lyrica. Currently I am taking Mobic,Ultram,Magnesium,Vita D3 and have had a few intense massage therapy's that has helped with my shoulder. My Dr has me on Prednisone. I started off taking 10mg on the 7th of June and today went down to 5mg. I've noticed a tiny difference in stiffness...but not much else where. Odd thing is,The day before I started the prednisone,I developed what seemed like the flu to me. Anything I tried to eat my throat and stomach said "NO!" and I simply could not eat...I ran a fever and couldnt move from the couch for 3days. But since then,I still have not been able to eat and I just don't feel right. I have had this happen to me at least 6 times in the past two yrs. I feel fluish and run fevers and can't move. But this is the first bout where my body is rejecting food.
I do force myself to eat as much as I can...because I'm the type of person who if I don't eat-I feel NUTS. I get really shakey and sick then too. BUT,after I eat I will have diarrhea and become very nauseous. Last night I made dinner for my family and I knew I wasn't going to be able to eat. I wasn't even interested. But I forced myself to eat a little anyway. After I became so nauseous and dizzy that I could barely communicate with my husband. I ended up taking promethazine and ativan in order to keep from throwing up.
At this point my tests have shown no high levels to determine an exact diagnosis of arthritis (my Dr says she suspects I have a form of arthritis due to my pain and inflammation in my joints and my family history) or other auto immune's. My Drs tells me she also suspects there is an underlying auto immune,but that she has not yet put her finger on it and it could take up to a yr. All women on m y mother's side of my family are inflicted with auto immune disease:Lupus,Diabetes,Arthritis,Scleroderma. One of my aunts have Grave's Disease and my mother died with Leukemia.
With each Dr visit I feel like I am getting NOWHERE! I've flip flopped to different Drs and I hate having to do this over and over. It seems these days that Drs are more in the dark or rather,their hands are more tied,than ever! So with each $50. copay,I walk away feeling like I'm taking less than baby steps. To be honest,I don't feel like I have time for this! I really feel like my body has turned on me and I'm withering away. I'm only 41 and I've lost my job and can't do much of anything anymore w/o feeling left breathless and out of commission. I made my bed yesterday after washing my sheets and you would have thought I ran ten miles!
I've contacted my Dr trying to get her to run the Lyme's test she says she'd do. I grew up in the country and had many a tick in my day pulled from my body. I am willing to test it all if I have to-I JUST WANT TO BE TAKEN SERIOUSLY. Sometimes I have resentment towards God because I've asked him,"If you're going to give me these things to deal with,at least give me the super power ability to lay hands on doubtful people and show them thru touch just how bad it is." Because you cannot see my pain on the outside. I just look lazy!
FMS is not the only thing I deal with. I have Hereditary Hemochromatosis:Where my body cannot rid itself of iron and so if not taken care of it will essentially destroy my body. I have Meniere's and I have a small adenoma on my pituitary. I have issues that work against each other like a bad bladder that isn't fun when i'm supposed to stay hydrated for phlebs for HH and almost non existant veins and if you find them they clot up right away. There are other 'mystery' things as well. And you know how they say your skin hair and nails are an outward example of what's going on inside? I have rashes on my scalp and arms and my skin is super sensitive to things.
So of course i am on certain meds that are on my non preferred ins drug list and my Drs say they cannot be substituted and I'll ALWAYS be on them. So what do I do? My husband wants me to put in for disability and altho I do feel disabled in a sense...it kind of embarrasses me because I'm always being told there are others out there 'far worse off than me'.
At this point I feel like God either thinks I'm invincible or he doesn't like me very much these days....
Like many other FMS people,I am SUPER sensitive to meds. I have not been able to tolerate Cymbalta or Lyrica. Currently I am taking Mobic,Ultram,Magnesium,Vita D3 and have had a few intense massage therapy's that has helped with my shoulder. My Dr has me on Prednisone. I started off taking 10mg on the 7th of June and today went down to 5mg. I've noticed a tiny difference in stiffness...but not much else where. Odd thing is,The day before I started the prednisone,I developed what seemed like the flu to me. Anything I tried to eat my throat and stomach said "NO!" and I simply could not eat...I ran a fever and couldnt move from the couch for 3days. But since then,I still have not been able to eat and I just don't feel right. I have had this happen to me at least 6 times in the past two yrs. I feel fluish and run fevers and can't move. But this is the first bout where my body is rejecting food.
I do force myself to eat as much as I can...because I'm the type of person who if I don't eat-I feel NUTS. I get really shakey and sick then too. BUT,after I eat I will have diarrhea and become very nauseous. Last night I made dinner for my family and I knew I wasn't going to be able to eat. I wasn't even interested. But I forced myself to eat a little anyway. After I became so nauseous and dizzy that I could barely communicate with my husband. I ended up taking promethazine and ativan in order to keep from throwing up.
At this point my tests have shown no high levels to determine an exact diagnosis of arthritis (my Dr says she suspects I have a form of arthritis due to my pain and inflammation in my joints and my family history) or other auto immune's. My Drs tells me she also suspects there is an underlying auto immune,but that she has not yet put her finger on it and it could take up to a yr. All women on m y mother's side of my family are inflicted with auto immune disease:Lupus,Diabetes,Arthritis,Scleroderma. One of my aunts have Grave's Disease and my mother died with Leukemia.
With each Dr visit I feel like I am getting NOWHERE! I've flip flopped to different Drs and I hate having to do this over and over. It seems these days that Drs are more in the dark or rather,their hands are more tied,than ever! So with each $50. copay,I walk away feeling like I'm taking less than baby steps. To be honest,I don't feel like I have time for this! I really feel like my body has turned on me and I'm withering away. I'm only 41 and I've lost my job and can't do much of anything anymore w/o feeling left breathless and out of commission. I made my bed yesterday after washing my sheets and you would have thought I ran ten miles!
I've contacted my Dr trying to get her to run the Lyme's test she says she'd do. I grew up in the country and had many a tick in my day pulled from my body. I am willing to test it all if I have to-I JUST WANT TO BE TAKEN SERIOUSLY. Sometimes I have resentment towards God because I've asked him,"If you're going to give me these things to deal with,at least give me the super power ability to lay hands on doubtful people and show them thru touch just how bad it is." Because you cannot see my pain on the outside. I just look lazy!
FMS is not the only thing I deal with. I have Hereditary Hemochromatosis:Where my body cannot rid itself of iron and so if not taken care of it will essentially destroy my body. I have Meniere's and I have a small adenoma on my pituitary. I have issues that work against each other like a bad bladder that isn't fun when i'm supposed to stay hydrated for phlebs for HH and almost non existant veins and if you find them they clot up right away. There are other 'mystery' things as well. And you know how they say your skin hair and nails are an outward example of what's going on inside? I have rashes on my scalp and arms and my skin is super sensitive to things.
So of course i am on certain meds that are on my non preferred ins drug list and my Drs say they cannot be substituted and I'll ALWAYS be on them. So what do I do? My husband wants me to put in for disability and altho I do feel disabled in a sense...it kind of embarrasses me because I'm always being told there are others out there 'far worse off than me'.
At this point I feel like God either thinks I'm invincible or he doesn't like me very much these days....
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