Posted 9/7/2007 5:15 PM (GMT -6)
Marji,
Hugs and sending lots of prayers that you get better. Stay strong!!!! Take care girl!!
 
Kitty
Polycystic Ovarian Syndrome 1992, Restless leg syndrome 1998, SVT tachycardia/Arrythmia '06 (gone after ablation 07), SLE '07, Raynauds '07....Plaquenil,  NorQD, Naproxen, Folic Acid (for mouth/nose sores), Multivitamin, magic mouthwash, Prednisone.

Posted 9/7/2007 5:47 PM (GMT -6)
Thank you so much for the good thoughts and wishes and suggestions. Thanks for the hugs kitty, I always need them. Thanks again babs for replying and caring. Yeah, hot tea sounds good, Rosie and I know I shouldn't have been driving, but I just wanted to get there and get back, coming back was better because I had used the inhaler more. It's terrible, but now I don't have to drive for a while until this gets cleared up and if I use my inhaler like every hour for a few hours, it gets better and I can cough up the stuff its really thick but clear so that is good. No infection. Thanks for the reply emmi, yes I get the pfts next Friday, the rheumie wasn't happy about me having to wait that long, but he said he would help me get a nebulizer maybe, but even as sick as I was so dizzy and confused, he said I probably don't qualify for oxygen. Once I'm brain damaged then I can file for it, LOL. I released some stress on bf and son yesterday and they came round and are better, but they are just sick of me being sick, and so am I and we need to get to the bottom of this. Rheumie offered to sign the form for tint on my car because he finally saw my sun rash and sees it is getting worse. He said my pigment on the sides of my face was from going in the sun being on plaquenil and wants me to stay out of it and use 50 sunscreen. The scope my gi guy did showed what he expected, red irritated patches he biopsied for celiac or some other allergy and he said that it looks like celiac, but he doesn't want me to start the diet--he wants the bx back then do some blood work to find out exactly what kind of allergy or problem it is. No cancer, that was good and no esophagitis, guess I got that healed up, I have to be very careful of that because of my liver and I'm kind of proud that I have been doing good on that front. No ulcers or gastritis all good, so that is good. My throat hurts and I didn't have breathing problems during the test, but used my inhaler before, and I also didn't take my glucophage and evoxac and now I'm wondering if they have something to do with the problem. Maybe another drug allergy? Oh and the rheumie said the malabsorption is common with sjogrens because the pancreas is actually part of the exocrine system I guess or linked to it, so it commonly stops working right and he told me to get pancrease, this over the counter enzyme if I keep having problems and the gi can't fix it. Thanks again, so much.
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

Posted 9/7/2007 5:54 PM (GMT -6)
Hi, Marji. I hope you saw my post to you at the end of the "Raising Awareness" thread from yesterday afternoon. I have been worried about you already. That breathing problem is SO scary! I know last year when I had pleural effusion on my left lung so much that the membrane was 3/4's full and my lung had partially collapsed, I felt like I was dying. Really! I was having stabbing pains in my back and chest. I was also weak. I was forcefully having to take very quick, short breaths just to get air in. It was so hard to breath. Mine went on for almost 3 weeks before they found it...and it could have been seen on a simple x-ray! That is not safe with you passing out from lack of oxygen. Is there not someone who could stay with you all the time until this part gets resolved? I really hate it that the bf and son aren't helping you right now. I know how badly you need all the support you can get! You really cannot be driving in that condition! What time is your scope tomorrow? Do you already have a pulmonologist? If so, you could probably just call and them work you in to check out the lungs. When I was having all my trouble last year, they would get me in as fast as I could get to them. You might could even call the one you've planned to see even if you're not established, explain what's happening and they might still work you in. I know my favorite nurse at my pulmonologist office says they always try to have "work-in" times available for emergencies. Please take it very easy and try to be very careful. Try to pay attention to every single thing you do because it's easy to fall or pass out when you're experiencing this. Please check back and update us when you can. You are in my prayers.
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 10mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg

Posted 9/7/2007 6:09 PM (GMT -6)
Marji, you must have posted while I was just finishing my post to you. After reading your post, I just realized today is Friday! Duh! You brought back a flood of scary times with your explaining those breathing problems and I couldn't even think of what day it was! Maybe the gi doc will have some answers for you when he gets those test results. Glad the bf and son are doing better. Just please do try to take care of yourself until they can find out exactly what is wrong and how to help you.
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 10mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg

Posted 9/7/2007 7:15 PM (GMT -6)
Hi Marji:

I'm so sorry that you're having so much trouble. I can relate to the shortness of breath, I suffer from chronic pleurisy and can't walk 300 feet w/o getting short of breath. There's not a lot I can suggest to you, I just wanted you to know I'm thinking and praying for you. Hope things improve real soon.

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

Posted 9/8/2007 2:01 PM (GMT -6)
Marji,
Oh I hope you are feeling better today than you were yesterday! Did the rheumi happen to take your O2 sats? Just seems like that would be a quick way of determining if you need oxygen or not.

Know that you are in my prayers, let us know how you are doing.

Love and Hugs,
Darlene
Chronic Fatigue 1990 * Migraines 1990 * Restless Legs 1995 * Fibromyalgia 2001 * UCTD/probable Lupus 2007* Clostridium Difficile 3/07

Posted 9/8/2007 9:12 PM (GMT -6)
Thanks sharen barb and darlene. I have had pneumonia so much and they never know why. I get it in the right lower lobe, which is an odd place to get it since the tube for that lung goes into the windpipe at a right angle, that is straight in. Usually people get in in the left. The only thing they can find is that because of my scoliosis and crooked neck when I lay on my right side, which is the least painful, it causes that tube into the right lung to be slanted and everything can drain into it. That's the theory now so far. But I am doing better, I haven't had pleurisy so far or fluid around the lungs except during the pneumonia, but it seems more like an allergy asthma thing now, though lots of stuff is stuck in my lungs now from it. My mom had the same thing she said the pred helped she has pleurisy too sometimes. I swear she has lupus but they won't diagnose her. She has lots of health problems like everyone here. Thanks so much for the kind replies, Barb, I hope you are doing better and healing up and that you are enjoying the new house. Darlene, my finger o2 sat is always normal usually, but my arterial blood gases are a mess. Unless they do that, they can't see the problem. My pulmonologist said the finger thing only measures one side of the heart and my problem is on the other side or something. I need to get them to do blood gases. They don't even hurt anymore. Well getting hollered at for dinner. Thanks so much and hugs to you all.
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

Posted 9/9/2007 2:49 PM (GMT -6)
Hi Marji,
  Well, I'm glad they didn't find anything during the scope but, I wish they could have given you better answers. Maybe their theory is right and not just grasping at anything. I hope you can find more relief somehow.
  Good luck with the PFT on friday. Let us know how that goes and take care. You are in my thoughts and prayers.
                                                        Babs
 
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
Meds:Arava,plavix,aspirin,protonix,gabitril,zanaflex,xanax,
mirapex,advair,foxamax,donnatal,folic acid.
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

Posted 9/9/2007 9:47 PM (GMT -6)
Well the section they bx looks like celiac or a food allergy or maybe something worse but if so its in the very early stages, but likely just the celiac like they suspect. That's what it looks like. I'm glad they found something because otherwise they'd think I was nuts or just wouldn't know how to treat it. The pred made me get bad stomach pain and was like a laxative, but once I took the meds to control that, I feel extra great. Thanks for your kind replies, Babs. I hope you are doing well.
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

Posted 9/10/2007 12:29 PM (GMT -6)

Hey Marji: Sorry to hear you are going through it too.  Sounds like everyone got a hard hit this year.  I just went through what you described.  Thankfully, I am out of it now.  My "flares" seem to be like that alot.  You are right it is so scary to drive with it.  I actually fall asleep talking to people.  Still having some trouble now with the sleeping thing, etc. but at least the bone pain and flu symptoms are gone now.  It is so scary, like you will fall asleep and never wake up.  The "alternate reality" thing gets to me too. I don't know how "normal" it is for everyone else (didn't read the responses yet), but it is normal for me.  I really worry about it because it happened real bad just before I got the dementia and just got worse and worse until I didn't know anything around me.  I still live in fear of that time.  It is like all the oxygen is sucked out of your brain.  Very weird feeling.  Also, get problems with breathing especially at night.  Needless-to-say, I don't get much sleep because the non-breathing thing wakes me up constantly.  (that and the muscle spasms). 

If not already done, keep us posted on how you are doing.  I like where you said you think of us to keep you awake.  That was sweet.  I think of everyone here all the time.  Keeps me going and I know I have somewheres to go if I need support (and they don't think I have 3 heads when I tell them what is going on).  Small miracles, I tell you.  I was just telling my sister-in-law how much of a struggle it is to stay awake driving.  Once I hit that brick wall (SMACK!), that is it, I am done for.  Those dreaded stop lights are the worst.  So embarrasing, having people honk at you to wake up.  I try my best NOT to drive, but it all comes on so suddenly, I don't even think not to drive.  We went to Walmart yesterday because I finally felt real good, came out of there, and SMACK, couldn't drive home and went right to bed.  Slept 3 hours until dinner - if you want to call it dinner - thank you Chef Boyardee in a can (a meal in a minute).   

Doctor said I can go back on the Provigil to keep me awake.  I get it hopefully on Thursday.  You may seek if the doctor can give it to you.  I am not sure if it is from hypoxia or not.  I have all the symptoms but it hasn't been diagnosed.  I just know they won't put me under anastheia because of these symptoms and the clotting, afraid I might not come back.  I hope catherization doesn't count.  They want to do a bladder catherization instead of a kidney biopsy.  I hope it is less evasive.  Anyway, are there tests for hypoxia?  You may want to ask the doctor.  I will, when my dance card isn't so full.  Something new to torture the doc with every day.  Keeps them on their toes :)

Well enough of this, I'm starting to foam at the mouth.  I really hope you feel better.  Enough is enough, right?!  They need to put a cap on how much crap someone can take.  Say 3 problems at a time sound fair.  Nothing fair about this stuff.  You know I wish you the best - HUGS!! - Kristin


 
  Dx:  Lupus CNS 11/2005; Current - Mitral valve sclerosis, MVP/regurg, dementia; GERD; vision loss, narcolepsy, RA, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  
 
 

Posted 9/10/2007 12:39 PM (GMT -6)
Marji: Another quick question, off subject. I lost ALL my teeth at age 35. One year they were perfect, the next completely rotted from the inside out (root upwards). You couldn't really tell when I smiled. 3 Dentists I saw said it was from lack of oxygen in my brain. Do you have this problem? I found it odd and wasn't sure if I said this before - Kristin
 
  Dx:  Lupus CNS 11/2005; Current - Mitral valve sclerosis, MVP/regurg, dementia; GERD; vision loss, narcolepsy, RA, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  
 
 

Posted 9/10/2007 2:27 PM (GMT -6)
Marji . . . wow!! glad the pred is helping. I hope it continues to help.

Blessings!
In His Grip!,
AlwaysRosie          "We can't control the waves, but we can learn to surf!"
Psalms 139
 
Co-Moderator ~ Lupus Forum
UCTD (Undifferentiated Connective Tissue Disease), Hashimoto's, Irratable Bowel, Inflammatory Arthritis
Clickable Links:   Healing Well:  Lupus Resources ~~ Lupus Foundation of America (LFA) Facts and Overview: Lupus.Org  ~~  Criterea for Diagnosing Lupus (4 of 11):  Lupus Criterea  ~~   Lupus Foundation Chapter near you  Lupus Chapter Locator

Posted 9/10/2007 9:42 PM (GMT -6)
Hi Thanks for the kind replies
Kris--yes I went through a spell where I had four molars crumble all at once for no reason and that was the year I got pneumonia really bad and nearly died and was first dx with hypoxia and COPD from chronic bronchitis and asthma. It could very well be from that since they found no other reason. Then again recently my teeth started breaking again. It's really crappy. I will have to check with th pulmonologist this Friday when they do my tests. I'm really having trouble and guess what, my son came home with a respiratory infection and didn't tell me and forgot that he needs to steer clear of me during this time because of the pred so now I've got a tickle and I'm praying that it will not develop into something more. Kris, it sounds like they really need to chekc you, did you have a sleep study and all and do you use a bipap or cpap machine for apnea at night and have they considered oxygen or at least a nebulizer during the day? It might make driving easier. Do you have a strong inhaler? That always seems to wake me up some, but the pred really helped.
Yes, rosie, the pred is so calming, I feel so relaxed and probably out of pain and so much less anxiety and depression, so much better, lungs open and clear. It is so nice, but all good things must come to an end. I'm amazed that I tolerated the prednisone so much, because medrol was awful for me, but the rheumie said this was different and I thought medrol was prednisone, but he said it is a different type or something. Anyway, I must need it because I feel so calm and normal on it. It is so nice. Now if only I can keep from getting sick.
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

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