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So Fed Up


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#1 summer

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Posted 19 July 2007 - 05:27 PM

Hi,
For the last 6 weeks I have had one drama after another with my health.
I have had severe reactions from meds, swollen stomach, hives, breathing/Lung problems, kidney pains and cardiac problems. I am due to see a number of specialists in the next few weeks to try and sort this all out.
I have had flu like symptoms for the last fortnight and am on penicillin which was helping at first but is now not any good. I have sore throat, aches and pains, fevers, fatigue, cough and cold, swollen glands, pains in stomach and sore neck.
I was told by my doctor that I could possibly have glandular fever and that I would need a blood test if I am no better in a weeks time!

I have forgotten the last time that I felt normal, to me feeling normal is feeling lousy . How I would love to go to the park with my son or to go shopping without feeling terrible.

I guess I am having another bad day but it would be so easy to give up and not care anymore.

Thanks for listening
Celia :( :(

#2 Elehos

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Posted 20 July 2007 - 01:02 AM

Hi Celia,

I would get to the doctor for the blood work ASAP! The worst part of determining if it's EBV or glandular fever is if a person waits too long; you can still have a host of symptoms even after the virus itself isn't easily detected in the blood, and 6 weeks after the onset you might not find out for sure.

Do you have any problems with your vision or swollen eyelid(s)? That's quite common with EBV, but won't necessarily turn up in everyone. I've battled with the same flu-like episodes for 25 years now, and it always hits one of my eyes, so I was just curious. I'm sorry that you feel horrible, and you're right that for many of us it's normal not to feel normal. Maybe one of the specialists can shed a bit more light on the subject, and it always helps to know exactly what's going on.

Best wishes to you,
Elehos

#3 whirlway

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Posted 20 July 2007 - 01:35 AM

Celia, I can remember those days, not pleasant at all, wondering if things would ever be normal again. Everyday some new symptom would show up while another would be gone, and I would be thinking what did I do to deserve this. In and out of the hospital. And then the doctors, sending me from one to another, passing me along either because they didn't know what was wrong with me, or they thought there wasn't anything wrong w/ me or that it was all in my head. Keep in mind, this was in 1982-3 era. Not much was known or publicized about lupus, let alone sclero. I finally flew over 300 miles to a 'good' facility and in '85 was given a diagnosis of lupus, which I didn't even know what that meant. There were times when I just wanted to give up, but I knew I had three small children, under the age of 5, who needed me, and my hubby, who needed me, lumps and all.
Today, I have Crest, lupus, no thyroid, Raynaud's, sjogrens, osteoporosis, fibro, gerd, and probably something I have forgotten. I can't remember what it's like to have a painfree day.
Today, I have three of the best doctors anyone could want. Two in my hometown, my primary care physician, who is an internist, and a gastro dr, and my rheumatologist, who is approx 80 miles away. I take drugs before I eat in the am. I take another handful after breakfast, if I can get it down, and then another handful before I go to bed. And extra pain meds when I have those breakthroughs.
Today, I actually feel lucky because I feel better than I did in '85 due to the good doctors that I see and the new meds that are on the market. It didn't happen overnight, it just kept evolving.
Your doctors will get it figured out, you will feel better, but your 'normal' will never quite be the same. It will get better, sometimes it just takes time to get it all sorted out. Try to stay focused, figure out what is really important to you, and don't overdo .
It's tough, we've all been there, and that is why we are here today, to try to give support to people like you who are just joining the sclero 'club'. It's not a membership that any of us wanted, but I have tried to make the best of it, and it has taken me a while to get to where I am today. We all get by with a little help from our friends.
Hang in there girl, it will get better. In the meantime, hang out here!
~whirlway



#4 PrincessB

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Posted 20 July 2007 - 02:11 AM

Celia,

I'm sorry you're feeling down at the moment. When I feel depressed, I take my dog out for a walk and become totally engrossed in how happy he is at the stupidest things. My advice would be to take your son to the park - even if you feel terrible now, he is bound to do something to make you laugh and cheer you up.

B x
Diagnosed diffuse systemic scleroderma December 2005 (on my 30th birthday, as if turning 30 wasn't enough?!)

#5 Sweet

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Posted 20 July 2007 - 04:54 AM

Hi Celia,

Oh hon, I am so sorry you are going through such a blue time right now. Push those doctors a bit, help them move faster in order to figure out what is going on, or at least make you more comfortable. When you're not the person feeling sick (like the doctors) they can take a much too slow approach in my opinion. Give them a push, get this moving.

Princess gave some great advice - if at all possible, take your son to the park anyway. Just getting out can make a big difference for me at times.

Love ya much - hang in there my friend.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#6 nan

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Posted 20 July 2007 - 09:22 AM

Dear Celia,
I am so sorry that you are so down right now. I think that you have received great advice from others. I was just talking with a friend today about how I wasn't feeling too good because I tried to act like a "normal" person. I usually remember and don't overdo, but then I forget and I really pay for it. I find even when I feel horrible if I get out of the house I feel better. Even if I just walk to the mailbox and get the mail. Also, when I am really depressed I think of other people I know that aren't doing well and write them a note or call them and I feel better. Hang in there and I send good vibes your way. :D
Nan

#7 TJ903

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Posted 21 July 2007 - 03:51 AM

I am still trying to figure out what a normal day is for me. Good thoughts are coming your way! I just got back from a visit to PA to see my family -I live in FLA. I did not have alot a strength mentally or physically but I wanted to see my twin neices who are 'horse crazy' six yr olds ride. Know what? The owners accomodated me and I could ride at least one more time. Never thought that would happen and I am so glad that I did. My one niece got a horse named 'Chief' that had allergies. Every few minutes he would cough and then my neice would yell out 'sorry'. I gotta tell you, I laughed so hard!!!!

Please go to the park, sit, watch your son, the birds, the grass grow and by all means find a way to go shopping. I've found that being in a wheelchair when I need it brings out the best in some people and they'll help you. Even if you just window shop, something will make you smile.

Good luck and I'm sending you hugs, smiles and an extra measure of strength!