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kathygirl

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About kathygirl

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    Senior Bronze Member
  1. The Dangers Of Daylight Savings Time

    I need to have my blood work done. Today was supposed to be the day. The nurses are only in until 2pm. I just couldn't get myself up and going in time. I guess I will be trying again tomorrow.
  2. Cystoscopic Examination

    I guess I will find out if I am built normally or not. Cant wait for it to be over. Thanks everyone
  3. Cystoscopic Examination

    Thanks Shelley, makes me feel better. One time I went to a dentist and asked if the root canal I was scheduled for was going to hurt. He said it never hurts. He lied.
  4. Cystoscopic Examination

    I was wondering if anyone has had this procedure. I read on the internet that usually the doctor uses a general or local for pain while doing this. My doctor said he uses nothing. It is the first time using this urologist. Our first meeting was no longer than 3 minutes. I am trying to find a different doctor but may have to go with him. I took cyclophosphamide for 18 months. I have been off it for nearly 1 year. I am having blood and large blood clots in my urine. Sometimes I have severe pain while peeing for several hours then it goes away. Anyone have any thought on what this could be? Thanks, Kathy
  5. Hi everyone, just wondering if anyone has gotten cancer from taking cyclophosphamide. My one doctor wants me to change from cyclophosphamide to Imuran because of the risk of cancer but I have had such good results from cyclophosphamide I hate to make the change. The only side effect so far I have suffered is a hair loss. The up side is I am hot most of the time. It was about 60 degrees outside and I am gardening with a sleeveless blouse on. I would appreciate knowing how long you have taken cyclophosphamide and at what dose and if you had any serious ill effects. Thanks Kathy
  6. Hi everyone, I have a question about skin softening. I started taking cytoxin about 8 months ago and within 6 weeks my skin started to soften and my hands started to uncurl. I have noticed that in the last month my skin has started to get hard again. I have asked the rhumatologist and sclero specialist about this and they both said that the skin can soften then harden then start to soften again. Has anyone else had this happen? Thanks Kathy
  7. Last year at this time I got a walker then this past summer I got a power wheelchair. I dont need the walker anymore and only use the power wheelchair if I would be on my feet for hours. We went to the zoo in the fall and had a wonderful time. I didn't worry at all about being tired and needing to find a place to sit and rest up. I would urge anyone that has the ability to get one to do so it will increase your independence. Here in Canada the government will pay 75% of the cost. My husbands health ins from work paid the rest. Organizations also will help with the cost if needed. Kathy
  8. Woke up choking

    I have choked the odd time at night but only when I am in a super deep sleep. The odd time I have woke up not being able to breathe, again when I have been sleeping deeply. Going for a sleep study is a good idea. I guess I should put that on my to do list. Take care Kathy
  9. Turmeric And Curcumin

    My doctor told me about a product that had turmeric in it. It is supposed to help with inflammation. It was really expensive but was a high quality shake that contained other minerals and protein. Unfortunately it caused stomach pain. I know it was the turmeric that caused the pain because I have also used the same product that didn't contain turmeric and I tolerated it fine. If your system can tolerate it, it would be worth a try. Kathy
  10. Blisters And Sores

    Hi Kiwi, I had something similar. My skin on my arms especially from wrist to elbow is extremely tight and hard. I started to get raised bumps some had fluid some did not. I had been scratching and later little yellow bumps appeared. The top came off of those and now I have infected sores about 18 some the size of a dime. Went to the scleroderma clinic and am now taking antibiotics. So be careful if they change color. They are very deep and are going to take along time to heel. I also have one on my baby finger. The doctor said its because of the scratching.
  11. My 1st Visit At The Scleroderma Clinic

    Good Morning everyone, I went to the Rebecca MacDonald Centre for Arthritis and Autoimmune Disease(RMCAD). It is through Mount Sinai Hospital In Toronto Ontario Canada. They are a member of the Scleroderma Clinical Trials Consortium (SCTC). The scleroderma clinic is located there. One piece of advice I can pass on is if there are any research groups in your area it might be worth joining. They seem to be the ones with the latest information and want to work with you. Or perhaps look for a teaching hospital. This forum actually started me thinking that my rheumatologist wasn't doing enough. I was learning alot more here then from my doctors. This morning Im feeling miserable ,I guess the antibiotics are creating a little war inside. My skin is really dried out and tight. Oh well, short term pain for long term gain. Kathy
  12. I found a huge difference between the rheumatologist and the clinic which treats nothing but scleroderma patients and does research. They really want to hear what you have to say and want to work with you and explain things so you can understand. I asked my rhumie for a referral there. What I don’t understand is why the doctor didn’t automatically send me there. The doctor at the clinic knew immediately the sores on my arms were infected and the thing on my finger is a digital ulcer. She gave me antibiotics, something Ive been wanting for the last few months but no one would listen. She is going to schedule me for a new picc line for next week ( just had one put in last week to get blood tests then it was taken out) Then blood tests, then I start cytoxan. I will also be able to get an endoscopy and colonoscopy. She said first she wants to hit me with the cytoxan to stabilize my disease. I also learned you start counting time from the very first symptoms. She figures Ive had scleroderma for at least 5 years not 2 years like I thought. So far I don’t have a lot of internal problems and hopefully at this point they won't progress too much. She also told me that the classifications of limited and diffuse is a bit old fashioned, just because you have limited you can end up with a lot of diffuse symptoms. The only real difference is with limited the skin thickening only progresses to the elbow and can include the face, where with diffuse it can be much more severe: arms, legs, stomach. She told me to call any time with any concerns I have . I have an appointment again in 6 weeks. The appointments are for an hour at a time. She is also setting things up so someone will come to my home to clean my picc line a couple of times a week as well as come here to take blood for my tests. She said she would try to get the arthritis society to come to get me started on hand therapy.
  13. The Brick Wall

    Hi Barefut, Hope your party was a succsess. Going to the beach is an excellent idea. My kids always loved doing things that were out of the normal. I think everyone likes a break from routine. Sometimes we would take the mattressess of the beds or use lots of pillows and blankets get a couple of movies and have a party in the living room. They would sleep there overnight maybe with a couple of there well behaved freinds and think they had the keys to the world. Simple and Cheap! Best of all mom gets to relax and watch the movie too. Brings back lots of memories. Kathy
  14. The Brick Wall

    Hi Barefut, You are such a good mom doing your best. Sounds like youve had a very bad week.When it comes to cake I dont think it will matter to the kids if it is homemade or store bought do whatever is easiest. As for going to the park I agree let the kids go wild there not in your house. Maybe one of the kids parents could help. Sometimes the simplest things create the best memories. I was a single parent of 3 kids one of them handicapped not much money. The things they remember the most are the times when things didn't work out the way they were supposed to. We often laugh about all the misadventures we had camping. One of their fondest memories is making jello jigglers then using them in a food fight. Now theres an idea for your party.lol Please take care.Kathy
  15. Vitamin B Complex

    I get vit B12 shots about twice a month. I also take fish oil pills 4 a day as well as probiotics. The thing that helps the most is folic acid, if I skip a day I am noticably tired. It also stopped my restless leg problem, the other night I forgot to take my pill and my legs drove me crazy. I am also eating much healthier foods. About a year ago my blood pressure was extremely high the top number was over 200 now my blood pressure is 110over 60. My alternative therapist has really helped alot in this regard. Depending on how Im feeling she makes adjustments in my diet and vitamins. I remember my alternative therpaist said there are some supplements, vitamins not to take when you have scleroderma because they contribute to the building of collegen. Unfortunately I can't remember which ones. Kathy
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