Jump to content
Sclero Forums


  • Content count

  • Joined

  • Last visited

Everything posted by quiltfairy

  1. DLCO and Pulmonary Hypertension (PAH)

    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.
  2. Storm fronts.

    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.
  3. Pain.

    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.
  4. Scleroderma?

    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.
  5. Aphasia In Scleroderma

    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.
  6. Pain.

    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?
  7. Scleroderma affecting my Sex Life

    I had a boyfriend for awhile, but when the pain in our intimate life came he just could not handle it. He was also a truck driver and the worst part for him was that if anything happened to me he may not be able to get here soon enough. Since then I have not been in a intimate relationship. I have decided that I don't want to go with the pain of breaking up again when things happen. I have many friends, but I prefer no relationships. Maybe it is unfair of me to say that no man wants to come into a relationship to care for a woman with a disease such as ours. I hope that you who are in relationships can have great ones.
  8. My hands have been hurting real bad for the last couple of weeks. I was not supposed to see my sclero doctor until October but I sent him an email and let him know what was going on so he set an appointment last Wednesday. He looked at my hands and said he could tell my Raynaud's was getting a lot worse and that my hands were not getting a good blood supply. He prescribed amlodipine besylate for it. I looked it up to see what it did. It is a calcium channel blocker to help the flow of blood my hands have a little color back in them. They were very white and sometimes had a bluish grey color. It is nice to start to see them as pink again. They still hurt but not as bad it is much more tolerable. When my hands do not like to work right anymore they are a little stiff. I am thankful for the spell checker in my computer or you would not be able to read this. I hope everyone had a great 4th of July celebration. For you in other countries, I hope you had a great weekend.
  9. I have a shower aid worker who is to be at my house when I take a shower because I have fallen getting out of my shower a couple of times . Anyway she usually does the dishes while I am in the shower. Wednesday after I got dressed I went into the kitchen to see that the drain plug had not been pulled or so I thought, so I reach in to pull the plug and all I got was a handful of dog hair and coffee grounds. After cleaning out the drain I asked my shower aid worker how the hair and coffee grounds got in the sink. She said she did not know how, so I looked at every container that had had coffee grounds in it and none of them had been washed. I checked my coffee pot to see if she had cleaned the filter; no, that was not it; the bag had fallen down in my trash can and that is when I discovered that she had cleaned out my garbage can in the kitchen sink. When she left I cleaned my kitchen sink with cleaning fluids and boiling hot water and then I proceeded to clean all of the dishes again with about half a cup of cleaning fluids in the dish water. I thought about just plain throwing out the dishes but my budget says no. I was a little sick to my stomach for awhile. I am calling her service on Monday and reporting her; she is a aid to several people that have a weakened immune system and she could actually kill someone with actions like she did with me.
  10. I have to report one of my care workers.

    I talked with the case worker today that had washed the trash can in the sink, in my belief it is always better to go straight to the source. She stated she will not do it again and then tried to make me sound bad, but I got my point across to her I think. But Wednesday my nurse will be here and I will also let her know about it. I hope this helps the situation. Thank all of you for your great support.
  11. I have let everyone I know about amazonsmile.com. They all say it sounds like a great program and are going to alert family and friends to let them know about it. Several friends have signed up for amazonsmile.com.
  12. Saw my ENT

    My ENT questioned me a lot about previous head injuries. I had had one in 2007. I still have the indent in my head from it and most of my doctors tell me I am lucky to be alive. Anyway my ENT said that I had shook loose the crystals in my ears, and that is what is causing my dizziness -- not fluid in my ears. I learned something new that day as I did not even know that we had crystals in our ears and that they helped us keep our balance. Which reminds me, in 2007 my neurosurgeon told me that crawling on my knees like a infant would help to bring my balance to my brain. Well it helped but I still have short term memory loss. The act of crawling and the shaking the head back and forth like an infant is how an infant gets balance to learn to walk with out falling over. Anyway, it is time to rest my brain from all the memories of 2007. Oh by the way, I was diagnosed with scleroderma in 2008, about one year to the day of the head injury.
  13. I have to report one of my care workers.

    Now I am really angry! I have become good friends with my neighbor and she also has the same worker come to her house. She had surgery in January, wound up with 3 extremely bad infections in the incision and she almost died from the infection. She wound up with a wound vacuum assisted closure to get the infection out and what she described to me was horrendous and she told me today that the care worker also washed her trash cans out in the kitchen sink. Oh my goodness, I now know why she was so ill and why she keeps getting so ill. She has diabetes which she needs to be living in a clean environment without the possibility of getting e-coli infection. Sorry about the rambling; I am just so upset right now.
  14. Saw my ENT

    I was loading a load of hay up in Canada. There were a couple of us throwing straps over the load to secure it from falling off the trailer. One of the straps hit me in the head by the steel hook end. It made a permanent dent in my head, fractured my skull and blew out c5-c6 disk bad enough that the doctors called it a broken neck. I have no memory of this happening. I just know what people have told me about it. Several doctors have said I am lucky to be alive. This is why I had neck surgery and what caused the crystals to come loose in my head. I deal with short term memory loss and other issues. I have learned to cope with most of it by writing notes and setting a routine for daily functions like locking the doors at night. My dog Mariaha lets me know if I miss something. I have to stay in the kitchen if I have something cooking or I burn it, but that is getting better as time goes along. This happened in May of 2007. My neuro surgeon has told me if workmens comp had let him do the surgery right away things would be very different and if they had let him do repairs on nerve endings things would be different. My company I was driving for almost killed me. I had significant brain swelling and they refused to let the doctor treat it. So I'm very thankful for every day that I am alive.
  15. Today.

    Today I turned the big 60. I was diagnosed the day before my birthday 4 years ago. After looking up scleroderma on the internet I was kinda feeling like I should get everything into place for my death. Then I found sclero.org. I would like to thank each and everyone of you for some smiles that I thought I would never be able to do again. Thank you for helping me explain this crazy disease to my family and friends and thank all you the most for learning that scleroderma is not a death sentence and that there is life after scleroderma. May I send my good thoughts to each of you, my friends.
  16. Upset, not sure if I am right

    I have a peer support person who comes to my home. She is there to help me through all of this. We got to talking about pain and how I wish there was a pain support group in this area. She piped up and said, oh you have pain like me, my back really hurts today. So I questioned her a little further on the issue. She was going to her chiropractor and her back would be just fine in a couple of days. I asked her than if she had scleroderma and she said no. I asked her if she had any symptoms of any autoimmune disease and she said no. I also asked her if she had cancer, she said no. I said why then are you making this a competition about who has the most pain? I was so hurt by this person who is supposed to be a professional. I am thinking of calling her office and declining any more visits from her. I don't know. I might be overreacting, but then again today has been a bad day. There is a storm front going through which means it is a pain day. i would appreciate any response to help me out. Thank you.
  17. Upset, not sure if I am right

    Hooray, Amanda -- nicely said!
  18. Amanda Thorpe's Blog: Crash.

    I agree with you Shelley; my family reunion was this last Sunday and I went to the picnic for about an hour and half, then I snuck away as just that little bit exhausted me. My aunt did ask where I went to and I said I had come home, I just did not want to affect everyone else's celebration.
  19. Upset, not sure if I am right

    There are many ignorant people in this world. People state how sorry they are for me; I simply tell them, don't feel sorry for me, I don't need pity. I need support without pity, I need encouragement to continue to do what I need to do, that is all I need and then I give them this website so they can truly understand if they want to.
  20. Support for partners

    Hi Maz, Welcome to the forms . I am very sorry for your loss and my thoughts go out to you and your family. Please keep in contact with us at this time of your sorrow. My best wishes are with you.
  21. X-ray false positive for pulmonary fibrosis

    Did anyone else watch the show on the television the other night about misdiagnosis; it was almost scary like your x ray being a false positive. If I were you I would get a second opinion. I am doing that with my ears; I get fluid in my ears for no reason, there is no infection or anything like that and my doctor keeps saying it is sinuses or another one of my allergies. She has said the same thing since 2007 and now I am finally going to see an ear, nose and throat specialist on Monday. My sclero doctor said my ear canals were smaller than normal, which could be caused by the scleroderma. So please get that second opinion. I also wish you good luck.
  22. Are there any younger sclero patients here? (30s?)

    Great analogy, Amanda. I know just how you feel. I was once an owner operator of a semi truck going down the road happily then life changed all of a sudden. I am now on disability doing nothing. I have no energy to do anything most of the time.
  23. En coup de sabre.

    Welcome everyone to the forums. This is a great place even at night when a person cannot sleep. I have a dent in my head also so but it is not en coup de sabre. I have a head injury from work that has caused me to become disabled. The doctors think this is where my scleroderma came from as I had a fracture in my skull that went untreated but did heal on its own. I wear my bangs long so no one sees it. Again welcome to the forums, this is a great place.
  24. Upset, not sure if I am right

    Amanda, I was at that point with my mother a few years ago. It got down to knock down drag out arguments at one point. I decided things had to change and I knew it was not going to be my mother who was in her late 70's at the time. So I stopped arguing if she tried to start one. I simply got up and left. Now all the family has learned that I will not argue. I will simply leave. It has made things much better at my parents when I am there. There are no more holiday arguments, no more competition about who is the sickest or who has had the worse life. I just excuse myself and leave. Maybe you will have to do this with your family member. It was hard to do at first because nobody understood what I was doing, then they figured it out. Good luck with your family.