I Canceled Thanksgiving

All flared up and way too sick to go out to dinner, so I had to cancel my Thanksgiving plans. I'm not surprised. I've had to cancel so much over the years with all different occasions.

My sound sensitivity has been really severe lately. And that right there, I knew I couldn't be out to dinner with a large, loud crowd of people. And the pain all over and the fatigue. And the boughts of IBS. And the inflamed nerves in different parts of my body. The list goes on. I have an earache from the swollen glands.

And today is no better. Can't move around much. And been wishing I was dead from the pain. I'm just so tired of having this disease. And tired of it not letting me live my life. And I wish there was some real treatment to help with all this. That's what really has me down. There's nothing. Just nothing. I feel like there isn't much light at the end of the tunnel.

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Just posted on your other thread. Don't give up, felt the same way all day. Just don't know how to manage this illness and still trying to live a life. There are so many like us out there, you are not alone in this. When I want to just give up I remember that there are others like me with this awful disease and I need to keep on hanging in even when it seems like too much. You know tomorrow may well be so much better. There are always some better days and sometimes you get on a better level for a long time. Hugs!!!
 
My experience this November has been similar to yours except the symtoms were so new and nobody would listen to me. My spine felt like someone poured gasoline on it and lit a match. Obviously a trigger started an immune response but the IV with steriods and antiinflamatories helped for about 2 hours. Then my rheumy tried pred with a decreasing dose. No pain meds I had worked except to make me weaker. Aleve helped but what was clearly an immune crisis stumped the ER docs and my doc. I had a low grade fever but felt faint and flushed most of the time. All their basic tests showed nothing but I was sicker than I can remember and affected me cognitively so remembering wasn't a strong point. I feel like the worse is over but if I do anything physical or mental the next day is a wash out. There was no joint swelling but my knees and elbows felt on fire. After 23yrs of this illness I was disgusted with the medical people telling me I was alright and I wanted to end it like you but then I thought of all the saints, artists, writers etc that died of TB and all they needed was a shot of antibiotics. In today's point of view, the answer is easy. We are missing our shot or cure because of lack of discovery. My maternal grandmother died of a diabetic coma when my mother was 14 because insulin wasn't readily available then. A few years ago I got pnuemonia and was shocked at how fast the meds cured me when I felt I was at deaths door and how sick I got until the next dosage. I could see how people died from this disease and so many did. So just hang on Carrion our shot or pill or infusion is coming and I want to be alive to see it.
 
Thanks. It gets so hard to keep cheerleading after years and years of this disease.

I'm disgusted by the lack of any real medical support for us. We could be bleeding out our eyes and they would still tell us we are "within normal range". Yeah, normal by whose standards?

I'm tired of not having any medical help and no family support. And just getting treated like a wastebasket patient. And by that, I mean literally like they wad us up like a used tissue and throw us in the basket to be forgotten about.

And I'm suffering so badly lately. And now my thyroid is acting up again, and I can't take the thyroid med because it started to cripple me. It inflames something in my lower back and my legs to where I cannot walk, stand or bend. So I went off it and that spine pain is gone, but I still wake up with some leg pain that might be a permanent thing from that awful synthetic junk drug. So I have the low grade fever and my thyroid is enflamed and the glands in my neck are inflamed and I have the fatigue from all that. I feel like one big mess. And no one is helping me when I need it. That's what kills me. My mother and I used to help tons of people when we had money. But now that I need help, no one is there. I guess we were idiots for ever helping anyone. People suck.

I don't know if we'll get a treatment in our lifetime. I wish. At this point, I just want validation and a huge apology from everyone who has misjudged me and treated me like crap because of this disease.
 
So sorry Carrigon, People just don't understand our illness, not even the medical professionals whose job it is to help us. It's frustrating and the repercussions from the lack of understanding are all too real, usually resulting in poor care, worsening symptoms, and lack of help and support from the community. It is really hard.
 

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