Update from Gay

[GayG]

Hello everyone, it's been several weeks since I've posted but we took one more trip before school starts. Went to  New Braunfels and camped on the Guadalupe River.  We tubed the river on Saturday and rented a four man raft on Sunday and did a 4 hour trip downriver. I did great until the very last when I got knocked out of the boat on the last little rapid…..I got back into the boat by myself just fine, that was a miracle, except I pulled myself in face first so I'm sure everyone would have liked to have been spared the bathing suit wedgy but oh well…

I don't want to bore people with pictures but I did get the Yellowstone pics back and a couple of you had asked to see them so they are at http://www.flickr.com/photos/gaygreg/

I know pictures can be boring but I'm particularly proud of the one that says I made it after that one mile hike, “uphill” to that waterfall.  I almost cried!  The tall young man is my son (he's 14) the older woman is my mother and the shorter young man is my son's friend….

I've had some more recent improvements….I've been on Minocin 14 months now and my lower legs are loosening up and my right upper leg is also loosening…I just noticed this yesterday after I worked out at the gym…my son fences twice a week so I thought I might as well use the exercise equipment while I wait on him…they have this terrific leg press machine that is “wonderful” for stretching out your leg muscles and that tight skin on the legs…..The only tight skin that is left is my legs and my lower arms and hands….I'm looking forward to the day that I can make a full fist.  I can also get down on my knees and back up again without too much trouble AND I can do it without help.  A year ago I couldn't do that at all….

I also had something else that I wanted to say about accupuncture.  My accupuncture doctor just got back from a convention in China and she told me she learned some new places to place pins that will help GERD.  I REALLY would like to cure that problem so will be going to her once a week for the next four weeks to see if this will help  Today, using this new technique she learned, she had needles stuck all over and instead of going into sort of a twilight sleep like usual I felt like I had been knocked out with anesthesia….I woke up and I had been laying there for over an hour and it felt like 5 minutes…..I also mentioned to her that I still have reynauds in my hands and feet but I noticed that even though I still have attacks occasionally where all goes white, they don't last long AND I haven't had one of those little infection areas around the nails in my hands or feet in a LONG time (I just thought about this today)….and I've never had a finger ulcer….during the year that I've been seeing her she has always treated me for heart and circulation, so I'm pretty convinced this is the only reason that I haven't had more trouble with the reynauds' than I probably would have….It's true there's no real way to know for sure but I do believe the accupuncture has helped a great deal and can't say enough good things about it and I DO know that it definitely helped my pain (I'm totally off pain meds now)….

The only skin involvement that's left is on my legs, lower arms and hands and I am still on medication to control blood pressure and heart rate (Lisinopril and Cardia)….but I DO have my entire life back and I am improving slowly but surely all the time…It is a slow process but so well worth the effort and the fight and hopefully someday I'll be able to get off of some of these mediations (I don't think they will ever let me get off of the Lisinopril but hopefully some of the others meds I can get well enough to do without)……I just want to say if you're new here, please be encouraged, I was so, so sick when I first came to this website (I couldn't dress myself or get out of a chair without help and was in awful pain in every joint and muscle I have)….but I can say now with utmost certainty that AP works, stick with it!……Gay

[lynnie_sydney]

What a wonderful, uplifting report Gay! And what a difference in 14 months! I am sure it will give lots of people here hope and encouragement. So glad you were able to enjoy your wonderful trip and congrats on your one mile hike to the waterfall. I had a look at the photos and Yellowstone looks amazing. I will be there in some weeks from now and cant wait! (Better get some decent walking shoes!) Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Kim]

Gay, you got me again!  While viewing your beautiful pictures, you are smiling in all of them and I am crying.  Happy tears, but, oh my, what a transformation!!! 

What an incredible woman you are.  Your son has witnessed strength and perseverance at its best.  He has lived this journey with you and can now share in the joy of having his mom back — and in a big way, I might add. He is adorable, by the way, and surely will be a more compassionate human being after seeing what his mom has endured.  And moms, well they're always proud of their kids, but your mom must just be spilling over with pride.  Mom must be a trooper too to take on such a rigorous trip ~ must be where you got some of that gutsiness.

Loved the pictures.  Can't imagine where the next travelogue will be from?

Thanks for the happy update…..kim

[Maz]

Gay, we're going to have start calling your updates, “Gay's Travelogue!” Your posts are more about continuing improvements, being well and all your adventures to prove it!!! That really speaks for itself. The pictures of your trip were incredible…and I just don't mean the scenery (which is also spectacular)…but, you look like a 25 year old…much too young to have a 14 year old son! Thanks so much for coming back so faithfully and updating everone here, sharing your big heart and hope with us. 😀 You're a treasure.

Thanks, Gay, and God has blessed you!

Peace, Maz

[linda]

Again, I love it! I remember when you were first starting to post and how much pain you were in- the improvement is great to see! I'm finally back in Tx, but my wonderful pain specialist is not- however, I'm going to the same physical rehab center for PT that he used, so I'm hoping someone there can direct me to another doc who does acupuncture. Love the story about the raft, I've never been rafting on the Guadalupe but I hear it's a blast.

You're probably a Mavericks fan, so you're not bummed about M. Ginobili's ankle injury yesterday- but SA is very upset.  :X  Everyone is angry that he went to play for Argentina in the Olympics when his ankle injury was still healing, but I get it- it's the Olympics after all. I hope it's not serious and that he's back to playing before the season starts. Maybe we could send him to your acupuncturist!;)

Keep on feeling great!

linda

[suera]

Wonderful photos!! You look great and so happy. Great news.

Sue

[Goodwife]

Gay,

What a great post!  So happy for you and your great improvements.  Keep up the good work and traveling and hiking and exercising, and all that fun stuff now that you “have your life back!”  Best wishes.

 

 

[annie from hawaii systemic sclero]

Hi GayG!  So great to hear you're doing better!  I dream of the day I'm free of this achiness.  I just saw Dr. E at USC.  Thank you again for referring me to him!  Keep us posted on your progress…. annie

[GayG]

Thank you Kim and THANK YOU to all of you that responded with encouragement and ANNIE it was so great to here from you….You gave me some of the best advice in the very beginning and I never forgot it…You told me to definitely not lay around too much, that I would pay a high price for it if I did and I always remembered that and it really paid off!

I have to say my son has been terrific through all of this and a huge help to me…but I think he may have seen the biggest lesson in compassion from his Dad.  Tyler's dad and I are divorced but when I got sick and he saw that I needed help he moved back here to help take care of me (well actually he lives in a pretty large motor home on the side of my house!)…but I couldn't have made it without his help….we've alway stayed friends.  He told a friend of ours recently that was the first time he ever actually “dressed” a woman,…very funny….

My Mom is a trouper…..she had a mild stroke on Mother's day of this year but she did great on this trip…….life is such a wonderful thing and I don't believe you quite understand that near as much as when you find out you may lose it early (thank God that's not going to happen but I do appreciate everything a lot more and don't waste my time on things that don't matter like I used to……Blessings!!…Gay 

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