Still in the dark and nauseaus

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cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 7/2/2007 2:22 PM (GMT -7)   
Hi--
I've been a recluse for a while.  I know the rheumie thinks my CFIDS and fibro are just acting up.  I've been sleeping crazy hours like from 11 till 1 pm and stuff, no energy, can't think.  Really, really bad.  I still can't go out in the bright light.  I used to love going outdoors on a sunny day, hated rainy days.  I don't know what's going on, and that's the frightening part.  They didn't give me my blood work results, I see the hepatologist tomorrow morning and I forgot to call and get my liver levels faxed to him today, how how stupid.  I don't think the ointment for my pigment is working, actually, it seems to be making it worse.  My bf says no, keep trying.  It's supposed to take a couple of months to work, but it takes forever to put the crap on.  My bladder is acting up again and neck and back.  my fourth of july choice is this, I can either go to my bf's rich bosses house and be outside all day and help setup tables and cleanup after fireworks and all, all day and night affair, or be alone at home another day.  Some choice.  My bf and son already made the commitment, saying we needed the money and his boss needed him and they don't want to miss out on hanging out at some rich guy's place.  I feel really sad that I don't think I can go and be with them.  I'm tired of missing out on everything.  I just don't think I can handle it.  It will be worse than my dad's wedding, since it will start in the morning with setup and not end until after 11pm and then cleanup starts.  I thought of trying to drive down to see my mother, who I'm worried about, but it's a 5 1/2 hour drive and I don't think I can handle it and her fiance is very moody and it's not real comfortable staying with them.  They have no guest room, just a sofa.  My dad is out of town, and I could usually stay with him, but not an option.  I will probably make myself go and work at this party and will probably hate it because I'll be too tired and people will treat me weird because I'm sick and they don't know it and they will expect more from me than I will be able to give them.  I'm so foggy now, I can't remember anything.  Then I stupidly commited to writing a newspaper article and possibly more freelance, before this all set in, and I will probably write one and no more.  I'm just not dependable anymore, my health is too bad, my mind.  It's so sad.  The worst thing about this is that for 13 years now I still don't know why I keep going downhill and what exactly is wrong, why when I was a healthy 28 year old I was just struck suddenly with illness.  The hepatitis, if I ever had it, is long gone, and the rheumie again said that there are things that can cause a false positive to hepc antibodies, since I've always been negative for the virus.  I think maybe I'm not taking enough pain stuff, maybe that is it.  I had to go so long without it, I can't tell when I hurt or not, I hurt all the time.  Maybe it is just the fibro and cfids.  I wish everyone here well.  I feel like a baby, but I'm so sick of never getting a diagnosis.  I'm gaining wait and craving sugar and my sugar is high.  Maybe from the steroid cream.  I'd take antidepressants now, but I don't think my liver can handle it and I don't want to be addicted to another thing.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 7/2/2007 2:37 PM (GMT -7)   
(((MARJI))) I'm so sorry... I feel for you right now. You are going through so much and I can tell its taking a toll on you. I wish I knew what to say or do to make you better but all I can do is let you know that I'm here for you. I know how it feels to be home alone when everyone is gone and its a bummer but if that is what you need to do so you don't get worse than you need to do just that. I would hate to see you get worse.
"Des"
Co-Moderator ~ IBS Forum
Co-Moderator ~ Lupus Forum 
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Klonopin 2mg/day (tapering to PRN), Miralax 17g, Supplements


http://www.healingwell.com/donate


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 7/2/2007 4:31 PM (GMT -7)   
Marji,

I'm so sorry that you're feeling so bad and that there are so many things that seem to be going on with you. I know how scary it can be when you know how bad you feel but you don't know what's going on. Hopefully you'll get some answers from the hepatologist tomorrow. I was ill for several months with hepatitis when I was a child but I'm negative for the antibodies as well. I can't explain it.

I'll be thinking of you on the 4th. It's supposed to rain here so I don't have to worry about making any choices. If you do go to your hubby's boss's house I hope you don't get too much exertion or sun. Take care and let us know how your appointment goes tomorrow.

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 6 mg, actonel, tri-est (compounded estrogen) 7.5 mg 2xmultivitamin, calcium w vit D, fish oil, aspirin


bhkhhh
Regular Member


Date Joined Jul 2006
Total Posts : 245
   Posted 7/3/2007 8:03 AM (GMT -7)   
Marji, I'm so sorry you feel this way! This darned disease is terrible! I know how you feel about being around strange people & for that matter anyone who refuses to believe you are really sick. I have a BIG problem with my hubby's family, haven't been around them in well over a yr & could care less. Talk about kicking a sick dog! Maybe you could make arrangment to meet your bf & son there later for the fireworks so you don't feel so left out & you can have some quality time with them. I'm with you here, what I wouldn't do to be normal!!

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 7/3/2007 8:50 AM (GMT -7)   
Thanks, Pat, Des, and bhkhh. I'm still nausea and all but its been gray all day so its good. I missed my appt with the hepatologist today, there was just no way I could get there even with my bf driving, and work my son getting to work and drive over two hours to get there by 8am. I don't know what I was thinking. I wasn't. Oh well, haven't missed one for a while. I forgot to get my test results faxed to him anyway. But I'm feeling better and writing again today at least. Fourth of July is figured out. They are just going in the afternoon to set up for a couple of hours then leave, be at home with me till late at night after the party, then will go back out. It works better for everyone and so I'm relieved. I still need to write this article for the paper, which I have to get my head clear for, but have all the info and pix. Its a good article about a boy with diabetes who is a real success story. I'm very proud to write it. I just wish I was my old me, it'd be done in a heartbeat. Thanks again for your kind replies, good wishes, and concern. It meant alot to me. I was really down.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


Leta
Veteran Member


Date Joined Aug 2005
Total Posts : 590
   Posted 7/4/2007 7:46 AM (GMT -7)   
hey cured,
sorry to hear that you are still having such a hard time. I don't know what to say except that I do hope you get better soon. I hope your doctors will listen to you. The first time you have a bad episode and are bright red I would take some pictures and show up to the doctors immediately so they can see how the sun impacts your life and what you struggle with regarding this. I would let them know the pain and nausea and all that comes with it. That is what I had to do to get the diagnosis of Porphyria but it was well worth it. I hope you feel better soon!! I am still here if you want to ask questions.

Leta
sle 99 w/cns & autonomic involvement 11/05, photosensitive 04/04, sjogren's syndrome 99, ra 99, fibromyalgia 8/05, sinus tachycardia 6/04, asthma 96, allergies to artificial dyes, sulfa, penicillin, cephalosporin 06/04, idiopathic neuropathy/neuro pain 11/05. Epilepsy 3/06, prob mini-stroke 5/06, Porphyria 5/06, Vitamin D deficiency severe 4/07. Meds are baclofen 40 mg, prenatal tabs, calcium, potassium, vit D prescription 50,000 iu, qvar, albuteral, singulair, plaquenil 400 mg, tramadol 400 mg, darvecet 100 mg, artificial tears, stuff for the sjogrens.

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