21 years old...Systemic Lupus , lupus nephritis , raynoids , Carpal Tunnel
Hi Carol - can't sleep - realized I missed your post first time through. I'm so sorry. It seems like it took an awful long time to get the scleroderma dx - especially if that was going to put your transplant into a marginal category. Sometimes things (doctors) just don't make sense, I guess. I hope you found a way to move through some of your totally understandable outrage and frustration - better out than in..... . You are such a special person - so caring and compassionate about everyone on here, and somehow you manage to inject humor and support and good old common sense on every post, in spite of your own tough road. Salt of the earth, I'd say, and clearly so very much more than the sum of your ailments. I'm betting on you, girl!
Birthday (((hugs)))) and wishes for better days ahead.
Hi ya Bab's, redrose,Lucy, Thank you ladies for taking out the time to lend me your support. I'm having a rough night sleeping so I wanted to write ya back.
Hey ya Babs my goodness girl I thought I stayed gone for a long time. I had seen you were back but I just couldn't get my body to cooperate with my brain. My brain said carol give her a shout and my body said shut up and lay down! Hum so what's up? I see you are taking a prenatal vitamin? Did I completely miss somthing important here? what gives. I need information
Hey redrose, let me tell ya I freeze all the time too. I feel like my finger nails get frost bite. I went through your old posts a couple of days ago because I red one of your newest post mentioning a problem with inlaws. I was so sorry to hear the trouble with the baby and you must be horrified about what is going on. My ex DIL lipped on tile floor while carrying my 2 week old grandbaby. She was able to grab her foot but she still hit the floor. The baby had a cracked skull from one ear to the other. Of course child custody was called. Fortunately they didn't take the baby but things can happen so fast. Thank you for you kindwords and my prayers are with your family while this is going on.
Hey Lucy,Hey Ricky, sorry. Actually they just sent me to the rheumy. They put me through all the other tests first. But the rheumy they sent me to is one that I had been to before. So anyway he had written possible scleraderma in his old reports. It took him no time at all to say I have scleroderma this time. I feel like the transplant dr. had him against the wall. You know how hard it is to get a dx, well I don't think the rheumy wanted to be the one that missed a dx. So basicaly he realy is no more sure then the last time I was there it's just they pretty much wanted a decision. I mean I do have a lot of the symptoms but it isn't like he ran any more tests then he had before. I should have made them do my rheumy first before all these other tests. I feared this would happen.
Well girlfriend I hope you finally got to sleep and that is where I am headed. Oh I could tell you must have been really tired when you called me the "salt of the earth" LOL but thank you and thank you for the happy b-day.
love to all
Hi Mel, frankly i have never heard of it. In the past few month they have turned me upside down and inside out. But I will get into it and ask my dr if they have checked it or not.
thanks for the info. yeah I'm not the needle kind myself lol. but Good for your boyfriend!
Oh thank you Fran. Do you feel bad enough for me to let me beat ya at trivia? I really just want to stop dealing with all those drs. and scans and stuff. It's been nice to spend a lot of time on this sight today so I could catch up and keep all this stuff off my mind.
thanks for responding.
Hi Donna, actually it was the day after my birthday to wish I though "Is this an indication of what this year is going to be like?"
I feel so left up in the air. The board hasn't flat out denied me but I don't have high hopes. I have tried to think possitive but when I keep hearing people tell me "carol think possitive you don't know what they are going to say" The heck with them let them think possitive. Well crud I need to stop dwelling on this or I'll get frustrated again. I gotta go take a shower so I can go swet at the PT classes.
love ya gal and have missed ya too!
Oh Judy, your a sweet heart. I am even getting where praying is getting hard for me. I'm not scared of dying I just am sick spending my time waiting and running around keeping appointments, My energy is very low. I have physical therapy /pulm therapy 3 days a week and I don't even want to go. I guess seeing a pschy dr. sooner then later would be a good idea. I went into my dr. and she asked how things were going and I just started crying. I'm just so tired. I know you know what I mean. We all got stuff going on.
I just want you to know how much I appreciate you and all the support I have here.
Hi Redrose and Marji, I'm sorry I didn't get back to you sooner I'm having some good days and bad days and the last couple just not so great. Don't ya just hate it when you are already to write a response and you have your figers on the keys and wham your mind goes blank! .
Redrose thank you, you are always there for me for moral support that and a cup of tea is all I need!I just wish there was something I could do with the terrible situation you are going through. I did find a dr. (pschy) in my area but I havn't made an appt. yet.
Marji, bless you heart! thank you so much for looking that up for me. I havn't looked at it yet but I will later today. I have physical/pulm. therapy in a couple of hours and need to take a shower before I go swet lol. Unfortunately the doctors that I went to are from the ones that the transplant team sent me to. and the good news is that the xray came back neg. for anything wrong with my shoulder the bad news is the shot didn't do anything. . The last time I got a shot like this it was in my back and helped right away. I don't get it.
Well I gotta get going. I'll let ya know what I get out of those links. I reallu appreciate you doing the reserch for me.
love ya guys
I'm terribly sorry to hear your news. If it's possible, I would recommend that you get a second opinion on the scleroderma (I know if you live rurally, that may not be possible). My mother had the type of scleroderma that attacked the organs; I believe they called it scleroderma sans scleroderma (meaning scleroderma with just a few skin symptoms).
It seems like a nightmare with all of the testing you've had to go through, but I do know that things happen for a reason. Hang tough, and know that we will be holding you close in our thoughts and prayers.