Jump to content
Sclero Forums


  • Content Count

  • Joined

  • Last visited

About Tawanda70

  • Rank
    Bronze Member

Profile Information

  • Location
    Waxhaw, NC

Recent Profile Visitors

1,431 profile views
  1. Hi Kaz! I too have hypothyroidism. When I first consulted my doctor, he said it sounded like hyperthyroidism. The test came back stating the opposite! I take my thyroid medication every day and feel much better from it. I only have to have a yearly blood test to make sure the dosage is appropriate, but I will never forget how I felt before the problem was discovered. Warm hugs to you!
  2. Hi Ellie. So glad you found this forum. Sorry to hear what is going on... your symptoms are so close to mine. I first saw a rheumatologist that told me there was no cure, little treatment and to just "deal with it". Needless to say, I never went back and have been treated by my general practitioner since. I have an appointment with a new rheumatologist this month that has some knowledge of this disease. The closest rheumatologist to me that is a specialist in scleroderma is too far away, so I hope I am happy with the one that I am going to see. There is not much more that I can add, as everyone that has posted as done an excellent (as always) job in describing the disease, providing useful links and supporting you. This is a wonderful place to come to and I encourage you to keep us posted on what is going on. Hang in there and know that we are always here for you!
  3. Miocean, belated congratulations!!! :emoticon-congratulations: May you continue to do well and I am saying many thanks for your one-year anniversary :)
  4. Thank you all so much for your encouragement! Healing has been slow, but steady. Totally amazing (and a relief!) that there is NO reflux. Still occasional nausea, but that's normal right now. Next step is to see my gastroenterologist on what do to about the 67.5 average on my acid pH. Had follow-up with the surgeon and the only small issue is adema in spleen and stomach... and of course he said that is due to me doing more than I need to right now. No biggie and this too shall pass. One thing I did not expect was to get a text from a "friend" saying that I was "acting weird" and she was no longer willing to provide transportation from school for my youngest. She said also that my youngest was "somewhat rude" to her. I got this about 4 days after the "incident" and was totally floored :emoticon-bang-head: . For starters, anyone who has had surgery has to deal with the aftermath of healing, post-anesthesia tiredness and getting used to pain meds and anti-nausea meds one is not normally used to dealing with. I suppose that can change your affect. Needless to say, my short response was that I was sorry she felt my child was rude, but perhaps my child was just worried about me. However this experience has made me see who really counts in my life. I have been fortunate in so many ways, this forum, my family and doctors. That must be my focus. I have learned to "drop" the toxic friends and try and let it go. I am taking things day by day and feeling better as the healing process continues. Isn't it hilarious that I cannot WAIT to use the new carpet shampooer that my hubby bought? Again, thank you all for your support and encouragement. Hope everyone is feeling well!!!
  5. So far, I have had no reflux! Still healing from the surgery, but happy to report that my surgeon said it was "text book". Incisions look great, still walking around with soreness, but of course that is to be expected. I think the gas that settled in my shoulders has aggravated the inflammation in my joints and that hurts almost as bad as my belly! My 15 year old stayed the night in the hospital with me and was such a blessing. All the alarms going off for more oxygen, low saline bag, low pain meds in my pump, were taken care of by her. I didn't know I was in the world, but she really came through for me... I am so thankful for her. Friends have brought meals for my family and that has been a great comfort. Sure do wish I could eat that good food! Staying on a soft diet for now. My frustration is that no one in my house did laundry, vacuumed, etc. and it is killing me to see the mess. We have a golden retriever who sheds constantly and I hate seeing those clumps of hair rolling across my kitchen floor. So, did a stupid thing and swept. Also did the laundry. No one offered to help haul those heavy clothes upstairs for me, so I did it myself. Prior to surgery, I paid a friend to clean house, but that money went to waste, as she did practically nothing but mop the kitchen floor and broke the power nozzle on my vacuum without saying a word to me (found this out last night when I tried vacuuming the carpets). Also, hubby did not go pick up HIS clothes from the dry cleaner this weekend and take the heavy comforter in to be cleaned, as he said he would do (oh, and there is another comforter there ready to be picked up also). Today I will be doing all that, hauling the vacuum in to be fixed, etc. This is not a pity party on my part... but pure anger :angry: It's amazing what anger and frustration can fuel in someone. I just hope I don't pop a stitch in my belly. Another thing I learned... people love to google surgeries and then tell you what you should do. I didn't know so many people were MDs in my circle of friends. And these very well-intended people have offered nothing else. I don't expect a lot out of people (this I have learned over the years), but from now on I will NOT discuss my medical condition with family or friends. They just don't get it, or do not want to. Good thing I have all of you who truly understand. My youngest daughter has her first out-of-town dance competition this weekend, so I will be hauling her 8 costumes and her large bag of dance shoes, make-up, etc. and also getting all her things in order prior to the trip. Sorry for the rant. There is just NO ONE else to express my feelings to. OK, now I am in tears so I'd better get going on my duties as laundress, maid, taxi (yes I am driving my children around since no one else will, despite my post-op orders). Hopefully next time I post I won't be so heart broken. Clearly, everyone else's needs come before mine, despite my surgery. The "sperm donor" of my eldest told her my surgery was no big deal... so glad she listened to her own heart!. Wow, the ugly truth hurts worse than I ever imagined. Hope all of you are doing well and love you! Caroline
  6. Can't add much more to what everyone has said on this thread thus far. I was diagnosed at 17, but when you are that young, you never think anything will happen to you. Now that I am 40, the past 3 or so years have been difficult. My first rheumatologist told me "there is no cure, so you are going to have to deal with it!" Needless to say I never went back to him! Family and friends just don't understand, so have them read The Spoon Theory. It will also help you realize how to proceed with this disease. Good luck and come here often... I no longer google anything. I come here for the real scoop :)
  7. Hello everyone! Hope this post finds you all symptom-free (or at least feeling well). My fundoplication is scheduled for tomorrow. Although I am so looking forward to no more spontaneous vomiting, heartburn and further esophageal erosion, I am feeling the usual trepidation about it. Luckily, I have some wonderful friends and family who will be making meals for my hubby and children and filling in on my taxi-mom duties, etc. I have heard from some of you that your surgery was a success and would love to hear more from those of you who have had it. My surgeon has a 90% success rate, has done over 1,000 of these and has never punctured an organ... hope I am part of his good statistics! It helps too that he is a cutie-pie :D Hopefully, I will be home within a couple of days. The concern right now is that my body mass index is 20, and with my limited diet, they may want to keep me in to load me with nutrients to "fatten" me up a bit before going home. When that happens, I will update you on how I am doing (keep in mind that I will be on pain meds, :emoticon-dont-know: ). Love to all my sisters and brothers of this disease, Caroline
  8. Cecilia, This forum is certainly the BEST in my opinion! I was diagnosed at age 17 (now 40) with CREST, with an updated diagnosis of systemic scleroderma. Warm welcome to you. Everyone has so many different symptoms of this disease, we are not all the same. BUT, we have each other here and it has helped me a great deal to stay away from my own pity parties. Much luck to you
  9. Dear Jeannie, Hate to hear all that you are going through... one thing that struck me, though. Your spoons are tarnished, so that means they are silver! And where there is silver... there is a lining :) My spoons are plastic and I broke all of them this week. Sunday was 13 hours of competition dance for my little one, Monday had to admit my eldest daughter to the hospital for 9 days vomiting, dehydration and diagnosis was Abdominal Migraine. We finally got home Wednesday and on Thursday, I was unable to get out of bed. Stress is a monster for me. This morning I woke up with terrible chest congestion. Grabbing my stethoscope out to listen to what I sound like before I dart off to the doctor. I am thinking of you and hoping that you get much reprieve from your symptoms. I will drink a margarita in your honour (after I take an omeprazole!). Warm hugs to you xxx
  10. Hi there J. The replies to your post I cannot emphasize enough are so true! I am going through that also... we all do. My own mother wants me to hide my disease from my children ( girls ages 15 and 8) so I don't scare them or worry them. My sister is a registered nurse and doesn't seem to get it. She went so far as to say (and I never got this diagnosis) that doctors just give people a Fibromyalgia diagnosis just to make them happy. Arthralgia is certainly a part of this disease, but I would never mention this to her because all I would get is the rolling of the eyes. It is hurtful to those of us suffering from this disease to have our closest friends and family think it's all in our heads. All I can really add is that 1) this is a great forum to come to where we all understand each other's maladies and 2) you cannot control what people say or think of you. That was a hard pill to swallow for me. None of us walk on water. Sometimes we must silently forgive those who do not want to understand and move on without them. Sometimes, they come around! One of my friends was an "eye-roller" until she read the spoon theory and actually brought me a bouquet of spoons and flowers (along with another friend whose daughter has Lupus at the young age of 12). Thinking of you and hang in there!
  11. Alice, does your esophageal manometry results prevent your surgery? I still have enough function to allow for the surgery. Now, if that goes one day for me, it will be dealt with then :huh:
  12. I forgot... one more question. Prednisone... how has steroid treatment worked for any of you? The Omeprezole I take (at highest dosage and been on for quite a while) 'melts bones' over time and I know steroids do the same. My grandfather-in-law had Lupus and took steroids and was fine on them, other than some swelling. I am concerned about osteoporosis later in life as well as bloating up and being crazy from side effects from steroid treatment, not to mention the bone loss. Any insight would be greatly appreciated :)
  13. Happy New Year to all! My fundoplication has been rescheduled for February 23, and this time I will not cancel (hubby would choke me if I did ). I am in the process of scheduling an appointment with a rheumatologist who was referred by a wonderful lady who works in the lab at my general practitioner's office. She has Scleroderma too... what a small world. When I was in there for a routine check of my thyroid levels, I told her my diagnosis, as she had asked what brought me in that day. She looked at me with such surprise and said she had it too. We got all teary eyed and we hugged like we were sisters. In a weird way, it is such a comfort to actually MEET someone who has this disease and KNOWS what it is like. She is about 11 years older than I and more advanced in her symptoms. I shared what is going on with me and she was very forthcoming about how I seem like she was 10 years ago. We joked about GERD and white hands and feet, how winter time is our worst, and sore joints. Surely, someone had a hand in this and also had a hand in me getting back on board here. I am out of my pity party and feel such love from you all. Since the closest thing to a support group for me is 3 hours away, this forum is the best I could hope for! Many thanks to all my 'family' here!
  14. You are all so wonderful for the encouragement that I really need right now. Last two days spent in bed so I could have enough spoons today. I shared "The Spoon Theory" with my family and close friends and last night, two of my friends came by with a bouquet of spoons and flowers for me that they put together with all their love. One of those friends has an 11 year old daughter who was recently diagnosed with Lupus and a very rare (no name for it) blood platelet disorder. Now she understands how to help to daughter learn how to manage her spoons! I will try to post the pic of my bouquet on here, just not sure how to do it yet. Happy Holidays to all and I hope that WE all have scleroderma-free time :)
  15. Thank you all for your posts. "The Spoon Theory" is great! Definitely will use it as a tool for my family/friends to have a better understanding of what my days are like. Mopsy, glad to hear your surgery was a success! I cannot imagine at age 21 dealing with all of this. I did call my surgeon to reschedule the surgery. My husband and I had a long talk about it last night and we have a "plan" to deal with the surgery, post-op, and coming home to heal. My girls are all "promising" to be helpful during this time and at all times my days aren't as good as others. Funny how my mother (retired RN) wants me to shield them from my disease. How can I do that? She said I will make them feel insecure. Well, they live here in this house too and see it. Talk about a GUILT TRIP! I think she should read something that will really 'rock her world of reality'. She is a strong force in my life and I still at my age allow her to play the guilt game. Any suggestions for her to read? The Spoon Theory may be too "soft" for her...
  • Create New...