FALL--ing apart

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cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 10/16/2008 10:16 PM (GMT -7)   
Hi all-
I haven't been on the pc much. My hands get so numb I can't type for long. My liver is hanging in there pretty well at my third/fourth month of isoniazid with only minor raise in my liver enzymes. The neuroathy is horrible though. Mythyroid is gettig bad again and my skin is all dry and cracked. I have gotten some kind of fungus on myfeet and it is really bad and I have mouth sores again.  The mouth sores seem like they are going to be a regular thing now. Ummmm Miracle Mouthwash....yuck.
 
My UT pain problems are back and have a deep pain in my hip like a deep venous/artery type problem on my bad leg, which isworse. And my right side has a horrible burning pain between side and belly button just below ribs and I think I will need a colonoscopy/endoscopy but am afraid too weak to get it and to top it off, I have some other unmentionable infection that will not go away. It seems a regular too, but hopefully is due to medication and not illness. Anyway. I'm a mess! My lymphocytes are down, I"ve had somenight sweats,which terrify me because I still have that possible lymphoma dx hanging over me. I'm just falling apart.
 
And guess what? My boyfriend is sick with a horrible respiratory infection. I've been sleeping in the other room. I'm so exhausted. I have cut my meat intake to once a day due to digestive and side effects of the isoniazid. I can't have bananas either and my low potassium is too low as a result. I drink smoothies, and I'm getting so I don't even want to eat solidfood any more. But I can't lose weight! What is up? I swear my body is one big hunk of scar tissue or tumor or something.
 
I'm sorry to gripe. Its fall, and I'm falling apart.   Anyone else in the same boat?  Does this happen sometimes and go away?  Thanks for listening.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
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, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 10/16/2008 10:56 PM (GMT -7)   
Marji, I am definately feeling similarly. I am really ill again, we tried upping imuran to 200mg but ended up starting cellcept instead 500mg with imuran 100mg and 20mg prednisone a day. I lost 4 1/2lbs and the ironic part is my rheumy was displeased- she said I lost it because I am ill and not because I am doing the right things. Thus she fears I lost muscle mass or other vital stuff instead of fluids or fat. She also made the comment that on prednisone at 20mg I shouldn't be losing any weight at all and that it is a sign of how bad things are.

Now if hubby gets sick he will have to sleep elsewhere cause I am immune suppressed. That is depressing. Alexander is due for his shots in a few weeks and I have to be really careful of diaper changes afterwards. I can't get my flu shot because I get pnemonia every time I get it- it seems to make me vulnerable to infection and my lungs gravitate toward pnemonia when they get infected.

I suggest getting potassium supplements ASAP low potassium can make you feel really bad and worse can kill you if too low or low too long. Also get your B12 and Vitamin D levels checked. Might also ask about folate levels. Believe me nurtitional issues can make you immune system 200 times worse and make you extremely sick. I did enough research that malnutrition terrifies me more than kidney disease and this is coming from someone who lost 2 family members to lupus related kidney disease.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 10/17/2008 3:35 AM (GMT -7)   
(((((Marji))))))), bless your heart! How awful. I'm sure you will have to do the colonoscopy if you are getting on a transplant list. If you want one of my kids you can have it. I don't think they will take it though. Geezh I can't even give parts away! Like redrose asked can you take the pot. pills? I am on lasix so I am on the pot. just to make sure. It can kill you as she said if you get really low. Maybe you are bloated and that is causing you not to loose weight? My weight has ben fluctuating about 8 lbs. any given day. It just depends on how much I pee. Plus I think we retain fluids when we are really sick. With your kidney problems it's hard to tell. Give yourself a break though. It's hard to lose weight when we get older anyway and than when you can't get out and be active it's almost impossible. I would sugest atkins but if youaren't eating me than that' s no good. Shoot I wish I had some ideas for ya. All I can do it tell you I love ya and I'm praying for ya. Let me know if I can help in any way.
huge hugs
carol
 
Possible scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, spirivia,aciphex,lasix,inderal,pot.chlor.,B12 
 Did you ever know that your my hero?
 
 


smokeyswife
Regular Member


Date Joined Oct 2006
Total Posts : 281
   Posted 10/17/2008 4:06 AM (GMT -7)   

Marji, I am sorry to hear you are feeling so unwell.  I hope that things improve for you and you get some healing relief. Please take it easy ok?

Connie


 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.Thyroid Disease ,RA
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 10/17/2008 7:24 AM (GMT -7)   
Marji, I'm sorry you are so sick again. It seems like once one thing starts going wrong, there is a snowball effect and everything just kind of falls apart. I hope you get some relief soon. (((((((Hugs))))))))
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 10/17/2008 2:40 PM (GMT -7)   
Sorry things are so rough right now for you, Marji - I pray they will calm down very soon, and you get the kind of help/input you need to sort it out in the meantime!
Hugs.
Lucy
diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds:  occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
 
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair. 
       ~~ Chinese saying as quoted by Helen Nearing


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 10/17/2008 7:12 PM (GMT -7)   
Hi Marji:

I'm so sorry to hear that you're not doing well at all. All I can offer to you is hugs and prayers. I'm hoping that you don't catch your BF's respiratory infection. Sorry to hear that you're having such a really hard time with everything. I'll be sending positive energy and prayers your way.

I truly understand when you refer to your body and falling apart. I feel that everyday in a out. Try to get some rest this weekend. Maybe once Monday comes you feel a bit better.

Hugs,
Barb
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 10/21/2008 8:05 PM (GMT -7)   

Everybody,

Thanks for the kind replies. I'm just really going through it on this stupid isoniazid. The doc gave me more nystatin mouthwash--to swallow, zithromax, and flagyl--which I couldn't take because it causes neurological problems and cannot be taken with isoniazid. Secretly I'm cheering about the flagyl, I can't hardly get the pills down and they kill my intestinal flora, which is about a total mess now anyway. And all my cultures were negative, so there you go. 

Thanks so much for all your support and sorry I can't type long my wrists get really numb even with a support and I can't sit up that well now and my brain is not so good--hard to stay positive.  That's the worst part.

Sorry to be a complainer. Just a side effect. Like a grumpy old sickie. smhair

Carol, I hope you are doing well, you sound better. I hope things are good out there and the weather all right. I'm not on a list now, I don't qualify, I have to get sicker. They are just seeing me because its likely I will be there unless they get the rest of my problems treated. I could suddenly get sick. I hope things are going well for you. Yeah, I'm chicken on the colon/endo, but will bring it up. Been having reflux too. I hope they figure this out. PSC seems logical in my case, but they say no, its all from severe endo and autoimmune cluster*.

Connie--If only! I try, but my hyperactive twenty year old son is all over the place these days and its a real good thing, but I just have to hide out once in a while. He's like a twenty year old fourteen year old sometimes! I catch him watching cartoons, but the worst part is I ended up watching them with him! about my mental level now.

Barb---gosh this falling apart mess is bad. It's never been so bad for me, except on interferon, which was horrible, like a torture experiment in which I never stopped screaming for about six months. I hope things are going good with you and that it's pretty up there. Are trees are dead looking or green, no pretty colors. And halloween is not widely celebrated, still hot sometimes, doesn't feel like fall much, except for the falling apart fall.

Hippi--I hope this snowball stops. I feel bad that I'm not myself and am so self absorbed and not feeling good and mentally like in a dream state half the time.  Do people pull out of these bouts with no damage or do we just sort of ebb and flow with the ups and downs of our immune system just getting worse? OR maybe just aging. Gosh, I sound so negative.

Redrose--I hope Alexander is doing well and letting you get some zzs. You are like super woman! I hope school is interesting and a nice break--I went when my kids were little and it was my sanctuary sometimes, even if I was falling asleep in the library. Thanks on the advice on the nutritional and being tested for those. My B12 is high! all the time! with no vitamins. It's odd. Like I don't metabolize it. I get headaches if I supplement with it. Right now the smoothies have the protein,vitamins, calcium, magnesium, potasssium, fiber, and I add probiotic yogurt and V8 tropical, which has more vits, so while it's not real tasty and a little bit of a sugar rush (I dilute with a lot of water) it's palatble. I still feel I'm missing something and I think it's the D vitamins out of whack, so I will ask when I get my next labs. I feel in the same boat as you, sort of going through bouts of immune system breakdown that seem to have long term effects. I have to get a flu shot, you reminded me. (((Thanks))) and Ihope they get things under control.

Lucy, thanks for the words of support. If only my brain worked well enough to figure stuff out right now. not so good. I hope you are okay and doing well.

Thanks so much. Your support means so so so much. The isoniazid is so strong an antibiotic I didn't get the respiratory thing (also had zithromax and nystatin too for other infections). My flora is a mess from it. Well. please remember I love everyone here and pray and wish the best for everyone and if I don't seem myself quite right and stay off the net as a result, please forgive. I feel a thin string to my sanity sometimes now, the neuro symptoms are hard to describe. But its common and I'm making it through and soon it will be over and I will look forward to much needed steroids!

 


Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
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, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 10/22/2008 12:56 AM (GMT -7)   
Margi, school has gone to pot. I have to drop 2 of 3 classes and maybe 3.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, now cellcept


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 10/24/2008 8:56 PM (GMT -7)   
Redrose--
I'm sorry. I don't think I could've gone having a little baby, esp. when you aren't getting sleep. I hope you can keep the door open on it, things may change in a year or two. I know its hard, there is so much bs now if something happens and my son had to drop out and now he lost his financial aid and had to pay back some. It was crazy. Well, I'm rooting for you and just hope you get some peace, rest and fun time with your family and maybe some alone time for yourself.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
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, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 10/25/2008 2:45 PM (GMT -7)   
I will be taking a full load next semester but I am making serious changes to my degree plan and no more on campus classes. I have to be realistic and realistically I can't do the archival administration certificate. Not the way I am anymore. I am doing good in certain types of courses and maybe it is a sign. I do know I have to accept that I will never be able to hold down a regular job, I really wanted to continuing holding out hope that when I finished I would be able to do at least 20 hours a week. Instead I think I might be able to freelance a few hours a week but nothing major. My dreams have to be adjusted and right now I am rather down because I have adjusted my dreams so many times already.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, now cellcept


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 10/27/2008 9:37 PM (GMT -7)   
I understand the adjustment thing so well. And its awful when its something you like, when you've given in before, and you've invested time and energy. I ended up in computers, I didn't even like computers. After six years of college, I did tech writing and found that I could be poor and bored tech writer or make real money in computers, which is what I did.

Now being disabled, I have time to write some fiction, though there are long times when I can't. I used to play flute and went to school for it and played since I was eight and can no longer play because of my neck. Lovely.

Try not to bum too much because things eventually work out in a way. And I took a lot of pride in my computer career because I was quite good at it and I got paid really well, which really makes life easier and more fun overall.

Will pray you get to have your cake and eat it too, that somehow you will get to do what you want yet it will be easy for you given your health, if anyone deserves it, you do.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
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, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn

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