View Full Version : Loopie!
My name is Tammy, and i've been visiting this site for a while now. Tonight I decided to finally register, and make myself apart of your wonderful family.
I already feel as though I know some of you here, and some of your stories have been heart breaking, while others have made me laugh. I love Rob's page about "good things that happened today". It's a nice change, and it sure is good to read about the happiness and laughter we can still obtain whilst living with such a horrible disease.
Well, we all come to this site for similiar reasons, and we all have a story to tell. My story started a few years back, when I started experiencing very bad joint pain. It took me about a year before I decided to go see a doctor. After a whole heap of crap, and a whole heap of tests, he finally told me that I had a whole heap of blood abnormalaties. He started off with my antiphospholipid antibodies-"High", Antinuc Ab's "positive", Homogeeous Titre >640, ESR,"High", and this all confused the hell out of me. Anyway, he referred me to a Rheumy, which I have been seeing now for about 2 years. I'm on 400mg of plaquenil a day, which thankfully has given me no side effects as yet, and although I have all these blood abnormalities, and symptoms, which can't be seen, but only felt, I still have not been diagnosed with anything. I was first told I had mild lupus. Then my bloods started showing the centromere titre, which I think is associated with limited forms of scleroderma. So now he's saying, that it normally tends to settle to one disease, but then he started talking about Mixed Connective Tissue Disease. I ended up walking out of his room with more questions then when I walked in. I'm left wondering whether this means I could have MCTD, or wheter this is a normal part of the process? Confusion is an understatement! It's hard at times to believe that this is really happening. It makes you realize how precious life really is. It also leaves me asking why people like us keep getting dealt with the wrong hand. For the sake of my children, i'm trying everyday to deal with my problems, but it does'nt change the fact that my life has become a painful nightmare, and I can't help to think of what my future will hold. I'm hanging on by a thread, thinking somethings got to give! It feels like it's all downhill from here, and things will never be good again. The worst thing is not knowing what caused all this to happen. Could it have been avoided? Is it something I came into contact with? What causes the immune system to start attacking it's own self? What causes all these antibodies to suddenly start appearing? I can't believe they have no idea of what causes all these abnormalities. It's frustrating.
Well, thanks for listening, and i'm looking forward to sharing stories with you all. Wishing you all a great day...and pain free!
I'm glad you decided to join us, and I'm glad you like my "good things" thread! I know what you mean about hanging on by a thread. Like you, I wonder all the time what has caused my immune system to go so terribly wrong. I think about all the chemicals I used to handle, about toxic substances I handled in the Army, about this and about that...
Drives me crazy at times, and it's frustrating to not find an answer. Everytime I have some new pain or symptom, or new diagnosis of yet another problem, I wonder what my future holds. Anyway, welcome to our group. Make yourself at home here!
09-08-2009, 08:12 AM
Me, I hang by a thread that makes a thread (needlpoint) sometimes...welcome Tammy...hugs
I understand your frustration...then you take a deep breath and have a go at it again. Changing our thoughts, rummaging through webpages and webpages, books trying to find an answer...the cause, anything I can change today...then I settle in and only to find myself the moment was fleeting and I am back to feeling frustrated again...
Keep looking for your wellness..
09-08-2009, 08:32 AM
Welcome aboard, Tammy! So sorry to hear of your difficulties in getting a diagnosis. There's nothing worse than feeling like crud and unable to get treatment because there is no diagnosis. Stay vigilent!
09-08-2009, 09:28 AM
first, welcome to our family. since you have been visiting this site for some time, then you already know how wonderful our members are.
I am sorry that you are in that frustrating phase where the drsl. just can't make a definitive diagnosis, so they seem to just toss around various possibilities. with the overlapping of the auto immune diseases it can be very difficult to make a precise diagnosis, so there is often a delay in this process. it does not make it any easier for you, but just hang on, they will get all of this figured out.
i am glad that your dr. started you on plaquenil, and i am so happy that you have not had to deal with side effects. Has your dr. tried a steroid injection for you joint pain?
do you already have your next drs. appointment scheduled? I hope you like your drs. and that you feel like they are trying to help you.
Thanks for taking the time to welcome me to this great site. How did I know that you guys would be the first ones to reply? LOL. From all the threads that I have read in the past few months, you guys stand out the most! There are a few others, but they have not responded as yet. But I have to say , that you guys are so friendly, and even in past posts that you have written, which I have read, you have made me feel better about the way I had been feeling. I'm looking forward to making life long friendships with you all. It's great to finally be able to talk to somebody who knows and understands, what it is we are going through. There's been a lot of sleepless nights, were I feel like talking to someone about the way i'm feeling, and i'd usually come here, to this site, and read some posts. That helps, and to know now that I can not only read the posts, but actually be apart of the conversation, makes me feel like I belong. Why didn't I do this earlier??lol. I was always like, "should I?" "My problems just are'nt big enough", and I thought well...i'd feel like I would'nt belong. But even though my symptoms are mild, and what ever it is, has'nt progressed, I guess at the end of the day, i'm still sick...and i'm still feeling what you guys are going through. And even though i'm not as sick as some of you guys here, I know that it is only a matter of time, and that scares the hell out of me. This is only the begining for me, and I know i'm in for a really bad ride, and like the old saying goes "if you can't beat them, join them". And I know that this is no race, but what i'm trying to say is, we are all under the same spell, and even though you might be sicker than me, or vice vercer, we are all fighting the same cause!
Well, I hope you guys are all having a great day, and i'm looking forward to my next visit here. Thanks again for making me welcome, it means a lot.
09-09-2009, 05:33 AM
A big welcome hug from me too. I am glad you joined us. I do have a diagnosis, but still get alot of questions answered right here. I just don't want to go to the doc for every new symptom I get, because there are alot of them. When I post a question here, I get alot of responses, saying " yeah I have the same symptom". When I hear that, I make the call, if I should see the doc or not. Of course, nobody here can give you a dx, but when you hear, that so many people have the same symptom you have, you kind of know.
09-09-2009, 11:29 AM
Tamy, the level of your symptoms does not exclude you from our family. Some of us fight every day and some of us have several days of feeling ok, and some of us can go extended times without any symptoms.....anyway, everyone fits in. We do not judge, we all have a chronic illness that has changed our lives, we are all traveling down the same path, some of us encounter more obstacles along the way.
As Debbie said, when new symptoms surface, this is a great place to educate ourselves about that symptom and then we can make the deicision to call the dr. I always receive so much comfort here....whereas i would lie awake all night worried, i can sleep at night after posting my questions here.....
so, my new friend, just enjoy the fun we have here (or start your own), and whenever something scares you, just ask....i promise someone will be around. You will probably find some us around during all hours of the night. We all know too much about sleepless nights.
09-09-2009, 06:22 PM
Glad you found this site! I'm really new here, too, and it was such a relief to find such caring, understanding people.
I hope you can get a definitive dx soon. My grandmother has scleroderma, and it's been over 12 years since she was diagnosed. She is this adorable, tiny, full of personality japanese lady (related to me by marrying my widowed grandfather when I was a baby). It's been hard to watch her go through it.
09-09-2009, 08:57 PM
Welcome to this site!! Although I am so sad that others are going through some of the same stuff as myself, it comforts me to know I am not alone. I am not nearly as well versed as others on this site, but I can share what I have been through and what I have done or learned to help combat this disease.
09-10-2009, 04:41 AM
Welcome to the site.Im sorry you are going through this but as you can see you are so not alone.I too have no diagnosis yet but am getting a little closer.Keep posting and know we understand you.
Thanks for all your welcomes! It's sad to see how many people there are struggling with autoimmune diseases, however, it does make me feel a liitle better to know that I am not alone. One thing which I have learnt from this site, is how different each symptom can be. It's amazing how we all suffer from the same thing, yet symptoms can vary so differently...and it's endless. I don't think there's any other disease out there, which carry the burdon of so many symptoms. When I read all your stories, I realized how strong and courageous you all are. It gives me streghth, and hope, and makes me believe, that if you guys can manage this illness, then maybe I will to.
09-11-2009, 06:10 AM
Yes you can Tamy!!! Im so glad you found us as it does help knowing that others have a similar symptom if not all,cause then you know you are not going mad.You can get through this ...we will help you!!
Love n hugs Amanda.xxxxx
Just logged on to see how you guys are all doing? Not quite sure what to do from here, i'm just making myself at home, and replying to any posts that get my attention. Well, hope your all feeling fine, take care, and keep smiling
09-15-2009, 05:27 AM
Yes thats what i do too.Just take it slow.How are you today? Hope you are a little better.If you click on community you can click on pictures that people have posted and comment on them.Or click community and then social groups,some of us post in there also.OR go n play a game in the Arcade,so much fun.
Love n gentle hugs
09-15-2009, 06:04 AM
hi tammy,you are doing great....just keep exploring around the forum, and jumping in on posts....i am so happy that you joined our family.thanks for your compassion.....struggling with lupus required a tremendous amount of courage...we are truly facing this beast, and we must stand strong for ourselves.