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Getting To Know You - Archives

255 posts in this topic

Hi Lizzy!

 

Welcome back! It is so good to see you join us here on the forums! We have missed you. I am sorry to hear about your mother-in-law. I am glad to hear that the IV Remodulin is working for you. That is great news!

 

I hope you will come and post often.

 

Warm wishes,

Heidi

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Hi I live in south La.I think I'm probably the oldest on here as I am 61.Was diagnosed with diffuse sd in 1998,also have had ulcerative colitis for 24 years now.I also have osteoporosis,sjrogens,mild raynauds,hiatal hernia,herniated disc,peripheral neuropathy and other stuff.Take lots of meds.I'm a grandmother of 2 boys,and 6 girls,but we're waiting for another girl any day now.It shows on here that I'm a newbie but I'm not have been around since 2002.Have 2 boys and 2 girls,husband of 42 years that I'd be lost without especially now,and he is on Aricept for dementia.He does work however and its helped him alot.I don't know what I'd do without him as many days he has to do everything for me.We also have pets,3 cats 2 dogs (small ones) a teacup chihuaha( spelling) and a little mixed breed one.I have just finished wrapping all the grandkids gifts for the holiday.Can't wait for the new baby to get here her name will be Kourtney Nicole.I try to stay positive about my diseases and know there are pople worse off than I am.Right now I'm fighting fatigue and it seems like I've been fighting it forever.Took our flu shots Monday of last week.Hoping to do something about my weight gain after the new year,I want to indulge in the holiday foods and goodies before I have to give it up.Well thats my little dialogue about myself,its interesting to read about everyone,where you're from etc,I am enjoying this.Take care everyone and my favorite saying is to SMILE. Mary-La.

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Hi Mary,

 

It is so good to see you posting on the new forum! And, of course you are not a newbie to us.....just to the forums!

 

Wow! Another new grand-daughter. I am sure you are so excited. Please keep us posted and let us know when she is born.

 

Warm wishes,

Heidi

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Hi, my name is Jody and I've been reading this board for a while, but decided I needed to post. My husband was diagnosed with diffuse scleroderma 2+ years ago at the age of 46 and we've been on the familiar roller coaster since then.

 

We live in the Twin Cities, Minnesota and as we both work at the U of M, my dear husband started seeing a rheumatologist at the U. We felt it was important to see a specialist in scleroderma and after some research decided to visit Dr. Wigley at Johns Hopkins. We made our first visit at the beginning of 2005 and it was a big relief for both of us to talk to someone who really knew the disease and had ideas for possible therapies.

 

My husband was put on Cellcept and a number of other medicines. Our sense was that the disease process slowed down through 2005 but continued to march forward. His symptoms included the hand tightness, which spread up into his upper arms as well as tightness on his torso and into his face. He continued visits to Baltimore approximately every 3-4 months.

 

We visited Dr Wigley in April of this year and he was concerned by the continued progression of the disease. He encouraged us to consider IVIG therapy. My husband started exploring the feasibility of this with our insurance company and once he got the go-ahead from them began treatment in June.

 

He had monthly treatments for the 1st 6 months and is trying to stretch it out to every 2 months. It has truly been a miracle drug for him. We have seen the symptoms slowly decrease and the tightness in various parts of his body lessen. He has gained back some weight and has energy to pursue his usual activities. He still suffers from Raynaud's fairly badly and although the tightness in his hands has become less, he still has limited flexibility.

 

We know that you can never know what scleroderma might throw at you next, but at the moment we're more hopeful than we have been since he started with the disease.

 

I see that a few others are receiving IVIG treatment and wanted you to know what a great thing it has been for my dear husband. I feel very lucky that it has not been questioned by our insurance and hope that with more documented success that more insurance companies will cover it and make it available for more patients.

 

I've blathered on for long enough but wanted to share our story with you.

 

Jody

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Hello all,

 

It has been quite some time since I wrote a post on this thing. I have been SO busy keeping up with my son who is now a toddler. He is 13 months old and the light of my life. His name is Eli, but he is also called mouse.

 

I am a teacher and worked for four years as a subisitute teacher in special needs classes and for a year as an ESL kindergarten teacher.

 

My husband and I have been married for almost four years now. He is my best friend, except when he gets on my nerves-lol.

 

I am Canadian, and just moved to the US-Seattle speifically, just six months ago. It has been afairly major adjustment. I have travelled a bit, done some hiking in the Candian Rockies, been to the maritimes and Egypt.

 

I began having health issues just after my son was born last year. It started with chest pains and body aches. Then I got sceritis in my eye that has been ridiculously stubborn and then worsening body pain. I am undiagnosed as yet, but the eye thing is enough for me to deal with really.

 

I have been told everything in the past year. I have been told I could have RA, lupus, eye cancer, vasiciltis, Sorjen's syndrome, and even post partum depression! Nothing firm yet in that area though. As of now it is scleritis, celiac disease, undifferentiated autoimmune disease and I am obese from massive doses of prednizone. Has been a scary ride! Anyway that's a little about me and how I ended up here...should I even be here? I do not have slceroderma- but the people are so nice!

 

I am going to celebrate the holidays at home in Canada soon, and in the new year I will be attending a very intense weight loss program avaliable in Seattle so I will be busy getting at least one of these diseases ( the obesity) knocked off the list!

 

Have a Happy Holidays everyone. It has been great reading your posts. If you have scleritis, uveitis, or another inflammatory eye disease please contact me.

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Hi Jody,

 

Welcome to the fourms! I am glad you found us, but sorry it is because of your husband's scleroderma. I am so happy to hear that the IVIg treatments seem to be working so well for him. That is wonderful news! I hope you will come here and post often and let us know how he and you are doing.

 

Hi Sarah,

 

It is good to have you joining us here on the forums. It does sound like you are quite busy.....hard to believe Eli is already 13 months! I hope you have a wonderful holiday as well and the treatment program in Seattle is all you hope it will be. Do keep us posted.

 

Warm wishes,

Heidi

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Hi Hazeltree,

 

Now I don't feel like the only weirdie out there (lol). It's funny that I always enjoyed painting my face and did a tree growing up one side and the branches and leaves spreading across to the other side. I could never yell at my kids for writing or drawing on their clothes--or even on walls--since they got it from me. There are some ways that we'll never grow up, but at least it's in a good way!

 

Best wishes to you,

Elehos

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Hi all,

 

I see that we have had a lot of new members join us since the last post on this thread. I hope all of you "newbies" with think about posting here and letting us all get to know you a bit better.

 

Warm wishes,

Heidi

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Hi All,

I haven't visited the forum very much recently because I was finding living in denial to be so attractive! Now, with some tendon rubs, and lessening range of motion, its tougher to deny.

 

I was diagnosed in 3/2006, 6 months after I had my daughter and 2 days after I had my carpal tunnel release surgery. I was living in Portland, Oregon at the time but have since trucked across country to live closer to family in upstate NY. We found a great farmhouse on 10 acres where our Golden Retriever and Burnese Mtn dog can run free. My husband is a middle school teacher and I, an at home mother for the moment. I am really enjoying the time to spend with my daughter, Libby and now that I live closer to relatives, more time with family. I was hoping to get started on selling some of the artwork I have been working on while at home (I'm always into something artsy), but with the recent hand mobility issues, I am hesitant to move forward on it. We'll see....

 

Anyway, thanks for starting the thread so we could get to know one another and thanks for all the great posts.

 

Heather

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Hello everyone! I've been reading everyones postings, and finnally decided to post. My daughter is the one with systemic sclero. She was diagnosed 2 years. ago. She is 18 now. The only reason we found out was her finger was bothering her for about a year. We were seeing an orthopedic dr. and he couldn't fix it, so he sent us to a Rhemuy. Who then did blood tests...and a diagnosis. She has Raynauds, this finger thing, hypothyroidism and a hiatal hernia. The only thing physically that bothers her is the finger. Mentally, that's another thing! My father passed away 6 mo. after her diagnosis, she was very close to him. My best friend 3 mo. later, she was her friend too. So trying to keep her on a up swing is a constat factor in our lives. I also have a 13 yr. old son and a husband that works out of town a lot.

 

We live in sunny So. California. With 2 dogs, 3 birds, and 2 cats. Both kids are active soccer players. We have very supportive family and friends. Though no one knows better about what's going on than all of you. This is such a great site. I read often! Thank you!!!!!

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Hello to all! Still a newbie but I have posted on a few forums and I thank you all for great feedback. I live in Escondido, CA, San Diego County. I began having symptoms in May 2006 and was diagnosed in September 2006. I have two kids a daughter 19 and and son 13. I am still working. My husband and I have our own company and provide software and accounting consulting. I also complete my training and testing as a real estate appraiser in June. I have a mentor and am persusing that as well.

 

My daughter is in her second year in college and doing spectacularly. We are very proud of her. She is planning a semester abroad in Ireland, spring of 2008. We are planning to meet her when she completes her semester and have a holiday. It's an exciting trip to look forward to.

 

My son is in his first year of high school. He tried to join the cross county running team but his body had other plans. He grew 4 inches in one month. Then, after a month off to strenghtened muscles that were causing knee problems, he grew a few more! He passed his dad in height so has been grinning for months! He expects to tryout for baseball (his love) but also wants to swim, golf and run track. Just to many sports during spring. He has been my greatest help thru this. Began by him opening my water bottles but now we have meal prep times together as I can't use a knife well. It's giving us conversation time in the middle of a hectic schedule.

 

My husband has been extremely supportive thru this. He travels a few days a week, but takes over all the cooking when he is home. We had plans to retire on a sailboat in Caribbean after seeing our son off to college. We may need to speed that time table up now that we have this diagnosis. I have let him know he will need to be crew, because I can only be captain! He has taken this suggestion? with good humor. He takes the time to attend some of my doctor visits and will make time to go with me to UCLA when that appointment is confirmed. It's great to have an extra mind and pair of ears. Sometimes he hears things I just didn't get and asks about things I haven't thought of.

 

I didn't realize, until reading this forum, how lucky I have been in my doctors. Although my reg. doc wanted to pat my on the head and continue the prednisone, I wanted to find/treat the problem. I just KNEW something was wrong. I called the insurance nursing advice line and they suggested I see a rheumatologist. the first one I chose assured me he would keep looking until we found what was wrong. He kept saying he BELIEVED me, when I described my symptoms. (they weren't always visible). After about a month of testing and weekly visits, When I dropped in one morning, without an appointment, he took the time to see me and immediately said (I know what you have!). Although not a happy result, I was relieved to have a direction to focus on.

 

Well....guess I had a lot to get out. Have a Happy! Laurie


Laurie906

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Hi Laurie and welcome!

 

I am so glad you posted on this thread and told us more about yourself. You sound like you have a very active life and it is always good to hear when a person's family is as supportive as yours sounds. Your seemingly positive attitude is sure to carry you far!

 

Warm wishes,

Heidi

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Hi Everyone....I am the Mom of a DS/Autistic son, Gareth, who is 18 years old and being worked up for sine Scleroderma. We live in Lancaster Co., Pa. Our 'adventure' started last Oct. when a swallowing study showed esophageal dismotility. Followup Anti-RNA Polymerase 1/111 blood work was positive, his ANA was positive.....along with his high sed rate. Other issues we are having include the 'zoning out', loss of voice or weak voice at times, fatigue, sloooooowwwwwww walking (evolution goes faster!!!) esphageal/throat pain, and drop in cognitive abilities at school over what he had been able to do. Personally, I don't think it's a drop in ability, I think it's because he just feels so badly and doesn't want to do the work!!! So far, X-rays have showed no Pul. fibrosis and we are still waiting to get in to see a pediatric cardiologist to r/o any problems there. His ped rheumatologist wants me to take him to Pittsburgh to Dr Medsger. He is having another series of blood work the beginning of Feb to see if the test results show the same. He's living on OTC pain meds....the only thing the rheumatologist wants him to have....for now. I have learned so much from this site and appreciate the friendliness of everyone.

Take care, Everyone.

Margaret

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