going to mayo clinic jan 7

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Leta
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Date Joined Aug 2005
Total Posts : 590
   Posted 12/29/2007 11:51 AM (GMT -7)   
Hey everyone,

I have been away for quite a while. I have been reading the posts though. I am sorry everyone is going through such a hard time. Rosie congrats on your weight loss!!!! I too have been eating healthier like I should.

I have been very ill, just in the hospital in November for a week through Thanksgiving and they thought I had multi-system organ failure. It was scary. It just clicked the other day I could have died. Thankfully my organs are back to 100%, not sure how or why, but they are. The doctors are very puzzled. My hematologist doesn't quite know what to say or do. I told him I was moving to be near the Mayo Clinic and get treatment for the next year. I am still battling other issues, as you all know, but hopefully this will be of a good help for me and I can share the experience with others. I am thinking of making a documentary to post on my blog or u tube. That way friends and family can keep up with what is going on with me medically. I am looking into either renting a video cam or buying one, seeing how much they cost.

Anyway, I am glad to be back, and hope I did not offend people while I was very ill. My body was shutting down and my attitude was not me. I am better spiritually and hope others feel better soon.

Leta
sle 01 w/cns/autonomic 11/05, photosensitive 04/04, sjogren's 01, ra 01, fibro 8/05, sinus tachycardia 6/04, asthma 96, multiple allergies 6/04, idiopathic neuropathy/neuro pain 11/05. Epilepsy 3/06-gone, TIA 5/06, Porphyria 5/06, Vitamin D deficiency 4/07, Iron deficiency ferritin 8/07, Chronic migraines 01. Meds- baclofen 40 mg, prenatal tabs, potassium, calcitriol 50 mcg, qvar, xopenex, singulair, plaquenil 400 mg, tramadol 400 mg, darvocet 100 mg, percocet 5mg, amitriptyline 10mg, chromagen, verapamil 40mf, Amitriptyline 10 mg. <font color=...></font> Purple Text


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 12/29/2007 8:48 PM (GMT -7)   
Hey Leta!!! Thanks for the update sis. No one here should be offended . . . we all have a life outside of this forum and sometimes it just consumes us.

Mayo Clinic ??? Yeah!! I hope you get lots of help there. This disease is so hard to nail down, I hope they can spend enough time with you to really figure you out. Sounds like you've been in a tough spot for a while. Glad you are feeling better though.

Your blog sounds like a great way to keep in touch with anyone who really wants to know what is happening. Great idea. The little digital cameras have movie capabilities now. They can do short clips which is probably all you want anyway and then you can manage the clips just like your pictures. Just a thought. I didn't even realize at first that ours did movies . . . sound and all. Its fun.

Thanks for the encouragement with the weight loss. An apple a day!!

Blessings!

In His Grip

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

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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


okie
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Date Joined Dec 2006
Total Posts : 2818
   Posted 12/30/2007 5:20 AM (GMT -7)   
Hi Leta, wow the mayo clinic huh? That's wonderful they do great work there. Like Rosie said the a blog sounds like a great idea. I've thought of doing somthing like that myself just to get things off my chest. I too have other issues and I am beginning to think I'm not getting very far with these doctors. If your doctors don't know what is going on with you than it sounds like it's time to make a change. I know how scarey it is to realize you could have died. My doctor told me recently I could live another 10 years with my copd but every time I get pneumonia all bets are off. and I get it alot. In fact it sounds like we were both in the hospital about the same time.
I hope you keep in touch and have alot of good stuff to report back with. Good luck and God bless
carol
God Bless
Lupus like symptoms, with pbc symptoms, stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 4x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3,Singular 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 12/30/2007 7:01 PM (GMT -7)   
Leta,

I'm so sorry you had such a bad scare and I admire what you're doing. Do let us know from time to time how you're doing.

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


emmi
Veteran Member


Date Joined Apr 2005
Total Posts : 1529
   Posted 12/30/2007 10:00 PM (GMT -7)   
Leta,

You are the person who taught me about porphyria (sp?) It is such a compllicated disease in itself that combined with all of your other problems, I hope that the docs at Mayo are able to help sort everything out and get you much, much better.

Lots of good wishes to you

emmie
</FONT>

SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy


Leta
Veteran Member


Date Joined Aug 2005
Total Posts : 590
   Posted 12/31/2007 10:12 AM (GMT -7)   
Hey everyone,

Ty for the replies. I am excited/nervous about going to the mayo clinic. Now the search is on for a video/camera to document this with. I am hoping to find out from friend a recommendation for one.

Also, do not laugh eyes I start kung fu classes with weaponry tonight. It has been a long time since I took martial arts. I forgot what I had learned, as I did used to kick box a bit. I called he school, and the teacher is amazing. It is a rare form, only 2 schools here in the nation open to the public. He has other people there who are recovering from strokes, ms, etc. He wants to help me. He was amazing. What a way to start the new year off right. yeah :-) He is aware of the Lupus, Mayo Clinic, and asked me to come in tonight for an evaluation of my physical strengths weaknesses so he can help. He wants me also to study with him meditation, and thi chai, and no extra charge!!!!!! His teacher also comes in for eastern medicine studies and I get to have a special class with this man when he comes to town!!!!!!

Whooohoooo!!!!!! I am scared as I know this will be tough, but excited as it is what I need.

I hope you all find the same support to start the new year off well.

Leta
sle 01 w/cns/autonomic 11/05, photosensitive 04/04, sjogren's 01, ra 01, fibro 8/05, sinus tachycardia 6/04, asthma 96, multiple allergies 6/04, idiopathic neuropathy/neuro pain 11/05. Epilepsy 3/06-gone, TIA 5/06, Porphyria 5/06, Vitamin D deficiency 4/07, Iron deficiency ferritin 8/07, Chronic migraines 01. Meds- baclofen 40 mg, prenatal tabs, potassium, calcitriol 50 mcg, qvar, xopenex, singulair, plaquenil 400 mg, tramadol 400 mg, darvocet 100 mg, percocet 5mg, amitriptyline 10mg, chromagen, verapamil 40mf, Amitriptyline 10 mg. <font color=...></font> Purple Text


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 12/31/2007 1:37 PM (GMT -7)   
Leta!!! Great! What a great diversion AND a great workout for you mind and body. I was looking into Ta Chi and signed up 3 times!! But the class was canceled for not enough or too many students. Now I'm a senior (55 entitles me to join the senior center . . . . LOL!) so I may be taking Tai Chi with the old folks . . . I'm laughing because I look like I'm in my 40's at best and I don't consider myself an old lady . . . but a gal's gotta do what a gal's gotta do.

Keep us posted how you do. Weapons?? Like a throwing star and numchucks?? You go girl!!

Blessings!

In His Grip

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

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 12/31/2007 10:00 PM (GMT -7)   
Thai Chi!!  That's awesome!  I want to know if you throw stars and numchucks too!  You sound like a superhero! LOL.  I'm starting pilates on the 8th....Yeah, this should be good for a laugh.  I'm the world's most unflexible woman.  Tell us how the Thai Chi goes!  I'm glad you're going to the Mayo Clinic too.  Answers and a direction are what this facility is most known for right!  This is good.
 
Blessings,
Ginny
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

33 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, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 1/1/2008 10:29 AM (GMT -7)   
Leta, I'm sorry to hear how sick you had gotten. How scary that must have been about your organs. I really hope the docs at Mayo can help - I've heard good things about mayo.

Good for you for taking martial arts. It should be good for your body and your mind. I like the idea of the blog and have been thinking about starting one myself.

Take care and keep us updated when you can.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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