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Sam

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Posts posted by Sam


  1. Well I know I havent been on and someone emailed me to see if I was ok. so here is it goes.. A week and half ago I thought I was going ot have a mental break down. Everything that I was keeping inside that I didn't know I was keeping inside decided to let go. One thing after another happened. I had decided to contact a psychologist and I had my first visit last week. I will see the spychratic one on the 5th. My rheumatologist appointment was the start of it all. I was just sitting there waiting for the doctor to come in and I lost it there. As most you you know I do alot in the scleroderma and Ph community . Dr. K told me I need some rest and to get it. That I was doing too much. At this time my husband and I were talking about selling our home of 6 years because we can't afford it with out me working, as most of you know I have been trying to get on disability since 2003. They dont think its severe enough for me to get it. I am appealing and got that going now. The most thing wthat I have been dealing with now is pain in the joints especially in my neck and hip and my knees. And feeling of depression. The doctors are aware of it. I finally told my Howie on how I feel and he said to me what about me, Kinda of weird comment but I understood what he met. He doesn't want to be with out me. so that afternoon went on and we finally talked more the next morning. Howie works third shifts now. I hate it... But I have my three doggies to keep me company at night. So that is what is going on with me. This morning I am dealing with lots of mucle pain forgot to take my lyrica last night before bed and I am paying for it now.. I am getting help and I sticking with it this time. sorry for so long but I thought since I havent been on in awhile and a friend on here was worried that I better post. Take care, And have a great Day!! hugs Sam


  2. Sweet, I have been taking this since May. At first you get a feeling like your drunk when you first get up. So I suggest of taking this at night for awhile I did this for atleast two weeks then the third week I took the second pill in the morning and one at night. For while because of getting use to the effects of the medicine. It helps me with my muscle pain and it also helps me sleep at night. I now take two in the morning 1 in the afternoon and 2 at night. My rheumatologist just upped it last week so that is where the 1 in the afternoon came form. So I am now up to 375 mg a day. I hope this helps. I had to have the doctor write a letter so I could get it approved for insurance company. Sam


  3. Well My sclero doctor upped my lyrica, I already take 300mg a day. My echo showed some stuff but it was the same as before. Which no new change. My blood work showed things that was really high which is normal for having scleroderma and OA and RA. As for th pain he gave me some pain pills. I hate taking meds... When I was in the room waiting for the sclero doctor to come in I just started crying why I have no idea but I am stressed right now. He told me to get some much need rest. I do alot for the scleroderma and PH community and he told me get some rest. Easier said then done. We are having a garage sale the realtor will be here today. Yes I have to sell my home. It has been awful financially for us since I am not working and I have been trying to get on disability since 2003. Were jsut digging a deep hole and we can't get out of it, then there is trying to get our meds I take more than my hubby. I so feel like everything is my fault. But I can't think that way but it is hard to.. Well enough said take care, Sam


  4. Will be going over my echo and PFT and also letting him know that my joints hurt all over. My knees are killing me when I walk or lay down or bend them. That started back in Dec. 07 but I thought it was from the steriods then it went away and now its back and it hurt really bad at night. It wakes me up. Its hard to explain how they feel. Then there is my neck which I have OA and it just hurts when I bend it forward and backward. Cant do that very well. Then there is my bowels giving me some problems. I pretty sure it is moving slowly and I am constipated too. I have more to tell but won't list all my aliments on here. Will update when I get back what he has to say about the echo and pft. Sam


  5. DD, I am glad that your doctor ran other test to find out what was going on. I am also happy to see that your doing good. My duaghter inlaw to be will be having her gallbladder out next week. I am going to take care of my grandbabies while she is in. Can you give me some ideas on what to do to help her out at home when she comes home. Are you able to come home right after the surgery?


  6. Peggy, first of all YAY your son is home for awhile. And I also want you to tell him thank you for everything he is doing for us over here. I am x marine wife and I am always thinking about our men and woman over seas. I have a x brother inlaw over there as well. I hope your enjoying every minute of him being home. I am happy for you. Take care, Sam


  7. Yes lately mine has gotten bad I would be sleeping really good and all of sudden I need to sit up its like I am gasping for air. I even have my bed up and my pilllows on a incline and still it happens I do need to let the gastro know. I take two nexuim and I'm still having it , but I also have a ulcerative colitis and a haital hernia . so maybe a check up is what I need. Let us know what is going on. See the doctor... Sam


  8. Some days are worse then other for me.. But I have notice that years ago I was alot like what you mention. Now that I am on lyrica for my fibro pain I have noticed that I have more energy now. I do like that. I also been doing more with the kids. Everyone has noticed that. I really dont know what is going on. but I like it. Don't get me wrong some days I just want to sleep but it not 45 min like sheryl its 2 to 4 hours or more. Sam


  9. Yesterday my sister called and said Natalie says your tardy then hangs up. So I call my sister at work and say what?? Then she says Natalie says your tardy. I said ok and why is she saying this, because I havent had a ct scan done yet. I told my sister to tell Natalie I would get it done if I didn't have the other medical bills I am paying for. .. Natalie my nurse that works for my doctor is so sweet and so young. She can't beleive I have been turned down for ssd. Well anyways I had to share this with you... I thought it was funny ..


  10. Well I have ben taking lyrica but now I think its not working. I have been on it since April or May. I am waking up with the pain in my knee area. Once in awhile my left side of my face is swollen. I am supose to get a CT scan done but I am still trying to pay the bills for last years test. I still hav eth eneck pain and hte hip pain. Some days I have a hard time walking on my feet. I do get swelling of my feet but I have been using a product for water retention and it has seem to be working. The other day we were supose to get rain and boy did I ache all over. Guess what it never rained here. One thing I can say about the lryica is that is has helped with the muscle pain. YAY!! I just wished it would work for the other pain. well I guess I wrote enough. Just wanted to check in for a bit.

    Have a great Day!! Sam


  11. Yes I ahve changed in so many ways and I keep changing. As I get older I know now that I shouldn't sweat the small stuff anymore. I was diagnosis at in 1996 but when I was in my 20's I had three small children and I thought I was going to die then. That is when I was first diagnosis and really knew nothing about scleroderma or even lupus. They thought I was going to have lupus. It was hard raising children and I did it myself. Then I got married and then I was raising them my self again. I have gone through so much and even with the kids. I had two boys and they gave me problems all the time.. My oldest and I bumped head big time. He was physical to me on many occasssions. For my children now they are grown up and now respect me alot. Especially my olderst son. He did apoligzed for everything he has done to make my life miserable but he said you kept plugging away. He told me a few months ago that I did a great job raising him and his brother and sister. That is ll I have always wanted to hear. Because at times I felt like a failure. I felt like I couldn't give my children what some children could have. My children never went with our food or clothes. But now they realize that you can't have everything under the sun and roof. That you have to work hard for what you want. Well Yes my life has changed in so many ways. And it will continue to change for the better...


  12. Thank Sheryl for posting I too was coming on here to post what her friend Darlen wrote... I will have to ask for permission to Shelley but I hope she will let it slide just this once.. Suzie was a fighter and every time I had spoke with her she always seem to be uplifting and in good spirits.. I will miss her.. But I know she is in a better place... Sam


  13. Well on another forum Suzie best friend wrote that she is not in any pain and is resting very peacefully but that she has not been able to respond at all since 2pm on Friday. Well all I can say is that we need to say please rest in peace and it is ok to go to Suzie.. That is the only way.. Sam


  14. My knees hurt when I am laying down and its usually by morning. Its like I need to get up and walk around to get it to quit. The burning feeling sounds like inflamtion. I dont have that. But I have had it in the past. Right now behind my knee is swolling that happens every so often.

     

    I do get tingling feeling when I stand for too long. They never did find out what was causing it. So I just tolerate it like I do everyone thing else.

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