Venting…
I just need to vent. Feeling a bit sorry for myself. I’m just so frustrated and tired of how things are going! I’ve been in the hospital a total of 2 weeks with this kidney infection now. I’m only 25 years old but my health is just completely in the toilet. I’m so ill I need a full time caregiver and am in a wheelchair. I can hardly get out of bed most days. I feel like the example for every possible complication of Sjogren’s! Between the AI pancreatitis and the AI hepatitis and the brain inflammation wreaking all sorts of havoc. Then there’s the arthritis which has me in a wheelchair that I wonder if I’ll ever get out of.
I’d say I’m too young for this, but obviously I’m not.
I’ve lost most all my friends to being sick. None of them wanted to deal with it. They are busy leading their lives and don’t have time or the desire to see or talk to me.
I’m tired of being such a financial and time burden on my mom. I feel so physically helpless and I miss my independence terribly.
Most of the time I put on a cheerful face and make the best and even find the positives of this bad situation, but right now I just am feeling really angry and frustrated and needed to let it out. So thanks for listening.
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I hear ya. Especially the part about your friends….you really find out who the true friends are, and even then they get tired of it all.
I especially hate that part of it.
Hang in there, gal.
I’m so sorry you are having to go through all of this. And I know sometimes I’m busy whining about my problems, but I want you to know that I am here for you no matter what. You couldn’t run me off with a stick! LOL. Seriously though, I wish there was more I could do for you. But I am praying for you, always. Don’t give up! You are a wonderful person! I bet your mom thanks the Lord everyday that she has with you! I know I thank him for giving me such a great friend! Love you girl!
You have more friends that you know; I’ve been fielding questions from a lot of people who are genuinely concerned with your health and well being.
We are not going anywhere, and will be here every step of the way.
Through all the adversity, you’ve shown an amazing persistence and strength of character. I, like many others, wish there was something we could do to make this all easier; short of anything better, you will continue to be in our thoughts and in our prayers, and we await your triumphant return once you get through all this.
Stay strong and keep in touch!
Think of us, your friends, as the energy that inspires the waves of hope that are ever lapping at the island shores of your despair. We care and send many many positive thoughts, hopes and dreams for your full recovery always.
My dear Sissa
You are not alone in a metaphorical sense. Even though I am not there with you physically. I think of you every day and pray for you every day. My mom knows who you are and she cares what happens to you too. You have a right to be pissed of and Angry. You have so much to give and the desire but your health is getting in the way. That makes any right minded person angry. If you could yell your freaking head off in the hospital I would say go for it. Maybe screaming into your pillow will help. I dont see you as feeling sorry for yourself I see you claiming what is yours. I wish I could be there and make the docs. do what they are supposed to do. I wish that i could be that advocate for you. It makes me appreciate what I do have and what I can do. You continue to inspire people even at your most awful moments and you feel good about that. You have accomplished what many people can not or even have the desire to do. WE LOVE YOU BELLE!!!
And yeah it sucks that our friends just walk right on by cause they dont have the capability to care, to call to send a freaking post card. But it will catch up to them one day cause the flesh is so very weak!!!
I love ya belle and praying
shannon
I am sorry to say that I completely relate. While my Sjogrens is not as bad as yours, mine has caused arthritis, Raynaud’s, a painful small fiber peripheral neuropathy, and the usual dry eyes/dry mouth – which are no fun, either. I was finally approved for IV immune globulin therapy for the neuropathy, because nothing seems to help it and I keep getting sick on immune suppression. I developed meningitis twice in 10 days from the IV Ig, spending 5 days in the hospital. I was so desperate to get relief, that even though there was a huge risk that the meningitis would come back with future doses of the IV Ig, I summoned up all my courage to get the next infusion, hoping that it would work. I would never wish meningitis on anyone. Just awful – although pancreatitis may be worse
I am a little older, 37, and have a husband and son who depend on my income. My Mom is not well either, and it is hard to help her when I am sometimes sicker than she is. I cannot work full time and am having difficulty typing because my hand is so painful. It really sucks.
I am so sorry you are going through this and I would make it better for you, me, and the millions of people with autoimmune disease if I could. I have this secret goal to go back to grad school and study immunology once I am better and my son is older. You can read more about me on the website listed above.
Good luck with everything. I hope you are home now.
Thank you everyone for your supportive comments! They mean more to me than you can possibly know and help me get through these rough times! <3
You have every right to be angry, frustrated and feeling sorry for yourself. Life throws us curves that we never expect. I always said, when you have your health you have everything. Without our health we lose a lot. Sad, but true. I see you do have friends, maybe not those old ones, however it appears you sure do have a lot of new and current friends. Even when I was feeling well our circle of friends kind of just dissipated with lifes’ demands and kids and the like. I find that unfortunately, I am not a very good friend anymore with this illness as I never know what condition I will be in from one day to the next. I may have 1 good day and 3 bad days. That does not make for a consistent friend. I try just to take care of my 13 year old and that is about all I can handle as I am now a single parent. I say, “each day is a struggle and I never know from one minute to the next what symptom will crop up. I just wish they would confirm this disease so I can fight the demon. How do u fight something you don’t know! I will pray for you. Stay strong! You are a trooper! I hope that I can have at least half your strength to fight this thing and I will be stronger for it.
Fond Regards,
Dolores