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Everything posted by quiltfairy

  1. I sat tonight and thought about all the symptoms I have now and all the pain, then I thought to myself "do I really want to know what is next?" I answered my own question with a yes for some things and no for other things.You see I have decided to enjoy what life I can as long as I can and to not spend time worrying about what is going to happen next. As I have read a lot of sites it can be scary and at times has put me in a pretty bad depression thinking about it, so for now I will read what people have to say, I will keep my appointments with my doctor and take the medications he prescribes, so that I can have as much good health as I can and who really cares if I lose my hair or have bladder control as far as I know I am the only one and I will live my life just as I always have. This is my statement for life at this moment. Please respond with how you feel about life as you are living it, even if it is a bad time for you. We all have them and this is a good place to speak your mind. May I give each of you that choose to accept a blessing from me.
  2. Hi I am glad Gareth is doing good; I hope he gets out in the morning. When I had my neck surgery I was in for a week because I got pneumonia; it was a side effect of the scleroderma. My surgeon said everything went well with mine except they had to straighten my throat to get the intubation tube in so I had a sore throat. My swallowing issues were quite a bit better for awhile but are starting to cause a few troubles again. When I got home it was only about two weeks and I was back to my sewing. I hope Gareth recovers as well as I. did. Please give him my blessing :hug-bear: and a few of the good things on here.
  3. On the old time TV series MASH they took the bed pans and made a fountain out of them.
  4. Thank you everyone for your kind words and thoughts. I will pass them on to my father and brothers.
  5. I got a call from my brother at 6:30 this morning. My mom passed away peacefully holding on to my dad's hand. She died at 7:11. I made it there at 7:15 but I know she knew I was on my way. I'm so glad she went peacefully and was kept comfortable until the very end.
  6. My Mom was put into hospice today. The doctors say there is nothing they can do but keep her comfortable. Her liver and kidneys have failed, Next is her lungs and heart. She is on a no resuscitation code and as a family we are respecting her wishes to not hook her up to machines to extend her life. She is ready to go, as she puts it. Mom has refused dialysis for the past year and at 85 I think she has the right to make that decision for herself and we as a family need to respect that. Respecting that is one of the hardest things we have done as a family but my brother will be here from Arizona in a few days and I think that is what she is waiting for, the family to once again be together.
  7. I sent you a private message about the pain meds I am on. Yes, my neck did hurt after the first surgery which they put in a metal disk. I wound up with this second surgery and I wish I had had it the first time. It took about three months to heal, but the pain in my neck is much better. I did lose a little movement, but not much and my neck pain is much better. I just wish they could take away the rest of the pain. The only real problem is in the winter; I have to wear a good neck scarf as if the metal in my neck gets too cold it hurts and yes, they did go in from the front. My surgeon was really good; he put the scar right where there are natural folds in the skin and you would never know it happened unless you knew it. I hope this answers some of your questions.
  8. In spirit I am wrapping my arm around Gareth to give him a big hug. Check out my xray in my photos entitled "As the sewing machine hums" I just recently had c5-c6 fused and I also have other pain, but the doctor would only say "from my neck"; i said "No from everywhere" she was straightened out on that after I was positive for Scleroderma.
  9. I had not, but now that you mention it it makes sense, Thank you Amanda
  10. Here is a new poem No Idea I had no idea nor did I want an idea But everyday I ask why No answer comes Is it because I was a bad girl or is it because I am me There is no answer and there will never be one for it is Just because.
  11. Hi all, One time my doctor put me on 3 different medications in the same week; one was for pain, I don't remember what the others were but I had an allergic reaction to one of them, so they had to remove all of them to figure which one was the one that caused the reaction. After that she started me on one med at a time, that way there is no question which one is the culprit. I just started on one for my Raynaud's and I am starting to itch today, so I will give my doctor a call in the morning. It may not be a allergic reaction, it just may be dry skin but I don't fool around with my meds and if I decide I should change any or the amount I call my doctor first or at some time as I could be prescribed the wrong amount. I always encourage people to talk to their doctor and if you are not happy with your doctor get a second opinion. I know you are entitled to the in the US, but I am not sure how that works in other countries.
  12. Yes, Amanda, that is so true about medication. I find when I start a new med I am in brain fog for a day or two, even some of them for a week, but my doctors do know about the memory issues and about the brain injury and when they start me on a new med if I do not come out of the fog within a week they are taking me off of it and trying something else. Sometimes I think we are all test subjects and we are lab rats, although it does seem to help in the end. The one thing that I most wish is that the pain meds did not affect me so bad especially when I first start them. Mothergoose, I agree with Amanda; talk to your doctors about every little symptom you have even if you think it is not important; it could be, in the whole scope of the picture. I will keep you both in my thoughts.
  13. Thank you, Shelley. As you said the things I wanted to say, only in a more eloquent way. Hi Ron, I understand you're worrying about things; I grew up with my mom worrying about everything. I went through a tornado in 2010; you might know about it because we were on the national news as the town of miracles. For a long time after that, every time the clouds turned dark I was getting a lot of stuff ready for the basement and I would worry until the weather was better. I know I was not the only one as the grocery store parking lot became full of worrisome people. It took a lot of time but now I sleep through storms and I very seldom listen to the weather because that worry took a lot of time and energy. Oh, I still get a little worried when the line under the TV show says tornado warning and it also took a lot of therapy. I am glad you talk about how you feel on here because information is a good thing and just maybe with all the information you get you can stay less worrisome. I will keep you in my thoughts and have hopes for you for the best.
  14. I understand and I get frustrated at times because the only information I have gotten is here on this site; I would at the least like to be a member of a pain management group. I have tried the pain clinics and all they want to do is put injections in my spine which do no good and mask everything worse. The doctors don't even understand this disease; I hear about cancer all the time on TV and I hear about helping our service men that have come home, but there are many other diseases out there and what about the people that are injured on the job at home? Are they not just as important to our country? I think not. This all started with a work related injury; I had to pay an attorney big bucks just to get the medical attention I needed and to get the financial help I needed. If workmens compensation had kicked in right away I might be back at work, but I had spinal fluid leaking that caused severe headaches for so long that they now will never stop. Workmens compensation would not let the doctor fix all the problems with my neck, just the basic put it back together that took a year. My doctor said sorry, but you will now be disabled for the rest of your life because nerves were pinched too long. It then took me three years to get social security, meanwhile I had no medical insurance so most of the doctors would not see me. I could not get any medication because I had no money; it just goes on and on. Amanda, I think you hit a nerve, thank you.
  15. I heard a saying on TV tonight about how we work together to help each other out and I thought it fitted all of us. I hope we can all work together at educating people and to get enough donations to find a cure.
  16. Hi Ron, Have you thought about not worrying so much, as I have a friend that is a doctor who told me it is really hard to get accurate levels for blood pressure and PFTs on a person that worries too much. I did that at one time; now I just tell myself IT IS WHAT IT IS and yes sometimes I have to scream it out, but when I get in the panic mode I not only wind up physically sick but depression kicks in or anxiety kicks in and then there is no accuracy to any test. At one time I wanted to be a paramedic but I gave that up for my true calling driving a truck. You would be surprised how blood pressure can change from scene of the accident and after our patients relaxed when we got them transported to the hospital. Good luck and I will keep you in my thoughts. I am no longer a certified paramedic, I let it slide a number of years ago and I think that was about 1995 since I last certified.
  17. I am planning on moving south at some point, but for right now my dad 85 and my mom 86 and live in this area and mom has Alzheimer's. My house is paid off and I get a tax exemption on it every year due to my income. Others might check their states; they may have the same kinda programs and it is to help keep seniors and disabled in their home. Basically Iowa has figured out it is cheaper to keep us in our homes then a nursing home.
  18. When storms come through the area I live in, I might as well plan on sitting in my recliner with heat packs because the pain is so great and it is hard for me to function. I also can plan on going no place unless I have a driver, because of the pain it is hard to concentrate. I was wondering, does anyone else have this happen to them?
  19. Yes Shelley, I do my best to stay busy with something; I make quilts and then I quilt most of them myself. I can truly absorb myself in them and I also make other items. I tell people to give me a piece of material and it will not go to waste. The family loves that; they get home made items for holiday and birthdays but like you say some days I just sit and watch TV or nap. My doctor says I have a great attitude about all that is going on; I tell her that is what keeps me going and I am not going to just lay down and die. The poetry is from a class I take; I drive 40 miles once a week to the class and I will continue to share ones that have to do with the illness.
  20. I have that same problem but it is not caused by scleroderma as yet. It is that my sweat glands in my feet plug up, and they get really itchy when that happens. My doctor gave me a prescription of a topical steroid cream for it. I get it mostly in the summer if I wear my shoes too long on hot days. Good luck and welcome to Sclero Forums.
  21. Hi, I also have those problems but the doctors put it down as traumatic brain injury or closed head injury. I have mini seizures at times and those are the times I have a hard time getting my words out and making sense of what people are saying. Have you ever had an electroencephalography (EEG) to confirm any of your symptoms? My neurologist is the one that did those tests; my doctors know I have seizures but have been unable to document any on an EEG at this point, but he also said it can take more than once to seizure. Good luck with your doctor; I find that persistence is the best way to get my doctor's to listen to me.
  22. Margaret, It must be hard dealing with pain when you don't even know where it comes from. My doctor has put me on a pain pill that does make it dull most of the time. Gareth may be subject to the weather like I am; when a storm is coming I can hardly move it hurts so bad, so I wind up taking a pain medication that has been prescribed for such situations. Like right now we have a storm front moving in and my hands are aching but I also know that when the front finally gets here and goes past I will feel better. Maybe Gareth feels the same thing and you could follow weather patterns that might help you understand his pain a bit better?
  23. I know that a lot of us have a lot of pain and sometimes I get very frustrated with it. Today I sat and wrote a poem about it anyway; I am in a poetry class once a week, so here is my poem I am going to present this week: It is called A Dream. I had a dream I awoke with no pain, no hurt, but it was just a fleeting dream What would I do? How would I live? It has been so long, so many years It seems it will never come to an end I feel as though I would not be able to live without my pain Pain has become my best friend. It is always there, never leaving me alone, never going away Like others have done. They seem to run when things are not perfect or up to their expectations So I guess pain can always be relied on. If others would like to add to it or have their own writing about their pain please add it.
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