Guest guest Posted November 27, 2010 Report Share Posted November 27, 2010 Hi, this is Dolores. when you find it, I would like to read it too. It seems like such a long time ago tha  I wrote it. Just a quick note to all. I am going through my complete physical and so far everything is coming up normal. There is still a tiny bit of sclerotic tissue in the bases of the lungs. More on the right than on the left, but doctor assures me that it is so small, there is nothing to be concerned about and my PFT's are perfectly normal. All blood work is normal and all the organs that were once damaged are all back to their normal state. This body is truly amazing.  Antibiotics are the way to go. At least it was for me. I wouldn't be alive today if it weren't for the antibiotic protocol. I have all of you here at rheumatics to thank and all the marvelous people at the Roadback.Foundation.org who were there for me at the beginning of my journey. And what a journey it has been! I'm still here reading all the posts and anytime a newbie needs me to assure them that they are on the right path, I'll be right there. I am working on the book and hope to be done with it soon. The best to all of you, Dolores  From: Zannie <zannie68@...> Subject: rheumatic Delores' testimonial rheumatic Date: Friday, November 26, 2010, 11:42 PM  Where can I find Delores' testimonial. I would love to read it. Thank you. Suzanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2010 Report Share Posted November 27, 2010 Allright Delores, I am so happy for you! YES Suzanne > > > From: Zannie <zannie68@...> > Subject: rheumatic Delores' testimonial > rheumatic > Date: Friday, November 26, 2010, 11:42 PM > > > Â > > > > Where can I find Delores' testimonial. I would love to read it. > > Thank you. > > Suzanne > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2010 Report Share Posted November 27, 2010 I don't know if this is what you are looking for but I did have this in my folders. Donna Delores writes: I was cleaning up some old files, that I keep b/cause the info is so valuable, when I came across your post, dated 09/01/09 which had been saved for future reading as I had been in the midst of yet another move and saved it due to not being able to be on-line while in transit. I'd like to tell you a tale about us. Mike & I were a normal couple, living and working in California, I was a traveling nurse, so we would choose a place we wanted to live or try out and land jobs there. We were happy with our semi nomadic way of living. Kids were grown and parents were fine on their own. So, we traveled a bit, settled in for a bit and then would move on again. Always employed and always covered medically. Summer of 1991, Mike was 44 years old and in good health, or so we thought. We had traveled to San Diego to combine our vacation time with a visit to see my mom. While there, Mike suddenly becomes very ill and hospitalized. Trying to keep this story short, he wound up hospitalized. Post surgical complication were two CVA's, a gangrenous foot which had to be amputated and a torn pancreas. Torn in the surgical process of a splenectomy, All in all hospital time was 10 months followed by 6 years of intense rehab. Needless to say, he lost his job along with his medical insurance while he was still in the hospital. His prognosis was very poor. HE HAD DEVELOPED PANCREATIC PSEUDOCYSTS which drained for months. I had been in the process of trying to recover from CMV & EBV which let to CFID, so I was not working at the time. We had traveled to San Diego in our old 16 ft Winnebago and ended up having to live in that. After the surgery and with no income, we went to live in our Winnie at a state campground to work as camp hosts. By that time we ended up on welfare as Social Security Disability had not kicked in yet. It takes a year after being approved and we had to fight for approval after being denied several times. So, we lived in campgrounds when we could and on the streets in the Winnie when we couldn't. As a nurse, I took over the monitoring of Mike's extensive rehab. Eventually, he learned to walk and talk again, but with many limitations. Finally, Social Security kicked in and they deducted every welfare money we had been given. A total of $500.00/ month was what we had to live on at that time. It was either pay rent or eat. We chose to eat and camp. Several years past and we were surviving homelessness, but not thriving. We needed a roof over our heads. I also remained ill with chronic fatigue. I had liver, heart and neurological involvement. We decided to try and make our way East as we weren't getting anywhere in our stagnant position and outdoor living was extremely difficult. We purchased items at low cost along our route at flea markets, yard sales, etc. and selling them at the next flea market. The trip took 4 months as we had to stop each month when we would not have enough money for the gas. Eventually, we arrived on the East Coast. The Winnie barely held up and we inched our way to NYC where we filled out an app. for a HUD apt. There was a waiting period, so we lived behind a truck stop in New Jersey and ate one lunch buffet a day. That was the most reasonable way we could live. The Winnebago no longer was running. It was October, and winter was fast approaching when we finally got the call, that an apt. was available and for the first time in 4 years of being homeless, we went to live indoors. Thank God for the old Winnie. We sold the Winnie and the rest of our inventory to purchase some furniture & household needs, put down the deposit on the apt. and began living normally again. Meanwhile, my condition continued to deteriorate so that I was not able to go back to nursing. After years of total organ involvement, seeing many specialists and having no firm diagnosis, I was diagnosed with Systemic Diffuse Scleroderma in 2005 and given approximately 5 months to live. I was offered the usual toxic meds which I decided to refuse and seek alternate ways of beating the Scleroderma. I had nothing more to lose. I would be dead very soon anyway. We had lived in NYC for a total of 9 years and had made some very good friends. So, when they bought a new computer, they gave us their old one to learn on and I immediately sought info on Scleroderma. I found the Roadback Foundation site and from there I learned about Antibiotic Therapy. Raynaud's on both Mike and I had set in and winters were now horrible and my lungs were failing me. Meanwhile my mom had moved from Ca. to Fl. I would go down there for the winter. Mom was getting older and senility was setting in. And each winter felt colder and colder and my docs up north told me to seek a warmer climate. The miracle is that I was still alive on antibiotic therapy. In 2008, my mom was declared incapable of living alone and I was told she either had to go into a nursing home or live with family. We finally said goodbye to the little apt. we had lived in for 11 years and headed south. We rented a larger apt. in Fl. for one year and moved Mom in with us. That was a bad year for all of us. We were so confined. We missed our life in NY, but knew we still had to move on further south. Florida gets its' cold spells and so we made plans to go south again. In 2009, I went into complete remission after 4 years of battling scleroderma. Meanwhile, Mike had developed Lupus anticardiolipin and other autoimmune problems and his raynaud's continued to get worse. I was still cold intolerant and my mom was very forgetful, combatant at times and getting older. We started to look for a place in Puerto Rico. Now it is 2010, and we just moved into a cute house, near the ocean with cooling breezes. We are climatizing and all three of us are doing well. It has been a long and difficult road. We are much older and more damaged, but surviving. Being on social security has been both a blessing and a curse. We have had to put up with healthcare insurance denials for therapy and medication. But, we are grateful, that at least we do have medical coverage If we find the right low cost clinics, we can survive. We now have a permanent roof over our three heads, 3 square meals a day, low cost meds availability and most of all, we have each other. My daughter, who recently became an R.N. and plans to do travel nursing, was here this past weekend. She gave us $300.00 to fix that darn broken down car sitting in the yard. When that is done, we would like two more things. A doughboy pool in the yard so that we can continue to do aerobic exercises and a portable hot tub for Mike, so he can continue his hydrotherpy pool exercises which keep him supple. Mike is also on antibiotic therapy so we don't sit in the sun at the beach because of hyperpigmentation and we must also monitor mom 24/7, She loves the outdoor patio, the fresh clean air and spanish speaking neighbors. Mom was born in Puerto Rico. She is 95 and the last living person in her family of all her siblings. We have all come full circle and we are happy and thriving. My ANA was 640 and my RF was in the high 80's. They are both 0 now. Mike's blood work is stable and he is developing hobbies among them gardening. We have just put in our organic herb garden and will start our organic vegetable garden soon. We have lemon, avocado, mango and banana trees. Life is getting good at last and we have friends that are now making plans to visit. Meanwhile, Mike is learning spanish, I'm improving mine and we are making new friends and connecting with relatives in Puerto Rico, we didn't know we had, thru facebook. Dolores & Mike, still married to each other for the past 35 years. Miracles abound. Thank you for the opportunity to share my story. Dolores rheumatic Delores' testimonial rheumatic Date: Friday, November 26, 2010, 11:42 PM Where can I find Delores' testimonial. I would love to read it. Thank you. Suzanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2010 Report Share Posted November 27, 2010 Donna, thanks for sharing Delores' testimonial. All I can say is amazing. Wow, what an inspiration. Suzanne > > From: Zannie < zannie68@... > > Subject: rheumatic Delores' testimonial > rheumatic > Date: Friday, November 26, 2010, 11:42 PM > > > > Where can I find Delores' testimonial. I would love to read it. > > Thank you. > > Suzanne > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2010 Report Share Posted November 28, 2010 CONGRATULATIONS DOLORES ON YOUR PHYSICAL!! And for never never giving up on your health journey. Yes, the body is amazing. This gives me confidence to keep moving forward! Blessings, Sally rheumatic Delores' testimonial rheumatic Date: Friday, November 26, 2010, 11:42 PM Where can I find Delores' testimonial. I would love to read it. Thank you. Suzanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2010 Report Share Posted November 28, 2010 Wow!, I hadn't realized that I had revealed so much about myself and our lives. There has been some addition since then. Mom passed away on Oct. 21, 2010 at the age of 96. She was tired and ready to go. Adjusting to being just the two of us again is taking time. The old car never made it. We had it fixed and a week later, the engine blew. A month without a car is about all we could take. Just purchased a new one and restarted our old line of business. We have become vendors once again at the flea market. We are both well enough to do this two days a week. I go to physical therapy three times a week for the back injury I suffered last christmas when my hammock rope broke sentding me crashing to the floor on my back. The therapy is working and the pain is subsiding. My tests are coming back normal. Still need to see a urologist for the stones I keep making and a cardiologist to be sure my aneurysm insn't getting larger.After that, we will enjoy working, living, and doing our sports once again. I turned 74 in August and feel better than I have in many years. Mike is also enjoying the tropical weather. Would you believe that we are getting climatized. The other night, the temperature went down to 71 and Mike and I went scrambling for sweaters and long pants. Who would believe that we were actually cold at the 71 degree mark. We are not complaining, just amused. Once we had the sweaters on, we were quite comfortable and laughed at ourselves. Life is good and getting better all the time. I still take my Minocin 50mg. three days a week on M.W, & F. We are the true survivors and you all can be too. My best to all, Dolores & Mike. From: Zannie <zannie68@...> Subject: rheumatic Re: Delores' testimonial rheumatic Date: Saturday, November 27, 2010, 10:20 PM  Donna, thanks for sharing Delores' testimonial. All I can say is amazing. Wow, what an inspiration. Suzanne > > From: Zannie < zannie68@... > > Subject: rheumatic Delores' testimonial > rheumatic > Date: Friday, November 26, 2010, 11:42 PM > > > > Where can I find Delores' testimonial. I would love to read it. > > Thank you. > > Suzanne > > Quote Link to comment Share on other sites More sharing options...
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