Checking are all of you folks doing???

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Date Joined Mar 2006
Total Posts : 2608
   Posted 7/15/2008 9:53 AM (GMT -6)   
When times are bad, I spend lots of time here leaning on my friends for support. When I'm feeling well, and out in the world, I tend to stay away. But I miss everyone and want to know how you are all doing.

I've hated to hear about Lynnwood's and Babs problems and wish I could do something to help. Hippi, it seems you're still on the same rollercoaster, busy trying to balance staying well and being a good mom, and I think the sun sometimes ends up being the winner, not my dear friend Hippi. Let me know what's going on in your life.

Okie, I know you've moved in with your brother and hope you're able to get ahead while you're there so you can get out of this blasted state and on to Arizona where I know you'll feel better. They have lots of good doctors out there too.

Barb, I'm glad you got to go to the reunion but hate to hear that you flared while you there. It's a hard price to pay but it's wonderful to see that you're determined to live your life and do the things that are most important to you.

I could go on and on but I hope you guys will write and tell me how you are.

Since I've gone gluten-free, I am a new person. I went back on gluten a month ago in preparation of the celiac blood test. My blood was drawn Friday and I'm waiting to hear the results, but I have to tell you that during that month I slipped back into my old creaky, tired, hurting self again. Since going gluten-free on Friday, I'm starting to feel better. It's a miracle.

We finally found, after a 2 year search, a one story house. We close on Friday and I feel like I'm going home. I've been living in the suburbs for 25 years because of the good public schools, but can't wait to get back to the inner city. Most of my best and oldest friends live within a stone's throw of our new place. So that's good for my soul. My daughter is home so she's committed the next month to helping me with the move.

Part of me feels selfish coming here and sharing my good news, but in reality, this is good news for everyone. I have the best doctors in this city but I took matters in my own hands and kept looking for answers. For me it was a gluten allergy. Hang in there friends. Bill is another example of how we can, if not conquer, then learn to accept our limitations and go forward. I still have pain every day but smile through it because I remember the time when I couldn't get out of bed for months at a time. It's been a long time since I've felt like smiling.

I'll be praying for all of you good friends and look forward to hearing from you.

Happer days are ahead.


Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, lunesta, multivitamin, calcium w vit D, fish oil, aspirin

Post Edited (PattyLatty) : 7/15/2008 8:58:06 AM (GMT-6)

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 7/15/2008 10:13 AM (GMT -6)   
Hey Patty !!!

I LOVE good news!!! YEAH! I think the hope it brings is a great tonic for all of us!!! Thanks SO much for sharing.

I'm mildly affected with various issues . . . and in general cope with a joyful heart . . . but had my little rough spot this week and am working my little brain out of it. As things deteriorate, even a little, and more limitations present . . . I feel painted into a smaller and smaller box. Until I get adjusted to it and paint some flowers in my new boundaries, I can feel pretty discouraged. Then, I come here and read and share and feel so much better!! Especially to see progress like yours!! Wooooooo Hooooooo!!!!

I'm wondering . . . do you DO the gluten-free diet for a trial period to see if you are intolerant? I sure don't want to lose another "thing" . . . but if that would give me back some physical strength and get rid of some stiffness and pain . . . it would be worth a try. I can't believe I haven't tried it already. (Don't want to think I have to play with my menu to that degree).

Rheumy wants me to see a spine/pain management doc . . . and I've decided I'll not do that until I've changed some things at home. Lose some weight and religiously do my PT exercises. I know these are things that I DO have control over . . . so I just need to hunker down and do it!

Your post shows that there 'can' be great reward in getting to know our own individual needs.

Thanks for sharing sis . . . . and . . . . SO glad you have made good improvement!!


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 7/15/2008 12:54 PM (GMT -6)   

Oh Pat that's wonderful! Never feel guilty about sharing good news. We all need to have hope for better days. I know you have had enough rough ones for 10 people. Moving huh? wow that's wonderful to be back with your old friends. Yes we do tend to do what we have to do for our kids education don't we? I know I stayed in one school district the whole time jason was in school because it was supposed to be one of the best. I'm not sure but at least they weren't dodging bullets.

I still don't have my puter hooked up. I'm using my SILS. they have 3or4 around here but they are upstairs and that's a lot of steps for me. I missed an appt. last week. I had with a pulm. a new one. I was supposed to go to his office than for some specialized blood work that they couoldn't do I was supposed to go to the hospital for, than back to his office. I was supposed to have all my paperwork transfered for home health care and the lady was supposed to go with me because I had to much for me to carry. Long story short it just got done yesterday so now I have to make another appt. Possibly looking into a transplant. but that is way down the road. with b neg blood it could be a wait. I'm not gonna worry about it though. I still have 2 good hands and 2 good legs.

Why did you have to go off the gluten free for the celiac test? It's probably some really simple explaination but since I have no idea what a celiac test is it's all news to me.

Thanks for checking in with some good news. I actually have only posted about 3 messages this month. I really need to get my puter hooked up but I'm trying to play catch up with my bills which seems to be taking forever. Gas,Food, electric. Thank God I have medical insurance, I actually just started getting meals delivered from meals on wheels a weeks worth of frozen meals. Which is great on days when I just can't get moving around.

Let us know how the tests go sweetie

love ya


God Bless
Possible sclero.  stage 4 COPD w/CHF,   Osteoporosis,osteoarthritis
Prednisone,Brovana, Pulmacort,zythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, aciphex,lasix,inderal,pot.chlor.,B12 
I will never leave you nor forsake you!

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 7/15/2008 5:41 PM (GMT -6)   
Thanks Carol and Rosie,

Sorry to hear you're both still suffering. I've read posts where you talk about the probablity of Crone's, Rosie, and I've wondered how your tests have come out.

Carol, keep up that happy spirit of yours. I don't know how you stay up so much, but I miss your humor.

Good news. The celiac test was negative, which means that I don't have Celiac Disease, which is:

"Celiac disease is a digestive disease that damages the small intestine and interferes with absorption of nutrients from food. People who have celiac disease cannot tolerate a protein called gluten, found in wheat, rye, and barley. Gluten is found mainly in foods but may also be found in products we use every day, such as stamp and envelope adhesive, medicines, and vitamins."

When I don't eat gluten, or wheat products, I feel so much better within just a week or so. I had to go back on wheat so that if I did have celiac, my blood levels would show antibodies that would indicate a gluten intolerance, and therefore we'd get an accurate report. (I hope a medical person doesn't read that!)

Since it's negative, I know for sure I don't have celiac, which I didn't think I did. But I'm still convinced that I have a gluten intolerance so I'll go see a specialists and try to get to the bottom of this. I already feel better since having stayed away from wheat since Friday. So there's something to it. Believe me, I get nothing from going off gluten except for the fact that I feel better. The month that I ate wheat, my stomach hurt 24/7 and my joint pain got much worse.

I've probably answered your question, Rosie, but to be more specific, it takes me a week or less of being off wheat to feel the difference. I don't even miss wheat (or cake, pie, cookies, right!) any more since I've been feeling better. In other words, it's so worth the sacrifice.
Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, lunesta, multivitamin, calcium w vit D, fish oil, aspirin

Veteran Member

Date Joined Dec 2005
Total Posts : 1950
   Posted 7/15/2008 9:18 PM (GMT -6)   
Hi Patty--
So glad to hear about your success with the gluten-free, sorry about the celiac! But so glad you pushed to get an answer. I've gotten worse and am at Mayo, I was terrified I had progressed to End Stage Liver Disease, but was delighted to find I wasn't there yet, so far as they know, and the liver transplant center has agreed to see me every six months. I'm also able to get an old latent TB infection fixed, and am doing so much better now! I got rid of like three infections on the treatment! I'm investigating the Marshall Protocol, a sight for researchers, physicians, and interested patients with autoimmune disease where they try determining and treating what they believe to be the underlying causes in some cases of autoimmune problems. Its interesting and might be appropriate for me, so there is hope!

I'm so glad to hear you are doing better! Diet makes such a big difference, gi/liver disease and ut pain teaches you that! It's good to hear from you.
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

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 7/15/2008 10:39 PM (GMT -6)   
Hi Pat!
It's so good to hear from you and what wonderful news that your new diet is working.  I think food plays a big roll in how we feel.  I sure hope you can get that one story house!  No more stairs!
I've had my ups and downs this past year.  Too much to write, but things are okay right now.  Fibro is flaring which isn't very nice!
Thanks for checking in with us!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 7/17/2008 12:57 PM (GMT -6)   
Pat, I love hearing how well you are doing and the gluten free dieat makes such a big difference for you. I have a feeling that a lot of us lupies might have a gluten intollerance. If I ever move to an area where I have more access to gluten free alternatives, I might give it a try.

I've really had a pretty good summer, with a few bad days here and there. I'm am so unbelievably sensitive to the sun that it does take it's toll on me. I take the kids swimming a lot and even though I stay under the umbrellas, I still end up getting just a little sun. At one point I ended up with an awful rash that turned to welts, so I had to just stay inside for a few days. I'm just thankful that I've felt good enough this summer to be able to do things with my kids and help them have a good summer.

I hope things keep going well for you Pat. Carol, it was good to see you posting and I hope that the move wasn't too hard on you.
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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Co-Moderator: Lupus and CFS Forums

Regular Member

Date Joined Mar 2008
Total Posts : 89
   Posted 7/17/2008 4:47 PM (GMT -6)   

I am doing okay lately. Off the pred and my doc just took me off the Fosamax. I was told to really focus on nutrition and exercise, which is always a challenge for me. I am just too busy and eat on the run. You know how that goes..
Diagnosed with Lupus in January 2008.
Currently taking Hydroxychloroquine (Plaquinel), Lisinopril and Hydrochlorothiazide.
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