fjperry

Newly Diagnosed - Possibly CREST

33 posts in this topic

Thanks again, Joelf!

 

I guess my main concern is how it will affect my children (18 year old daughter and 7 year old son). I just imagine my health deteriorating and making my daughter either not do well in school or needing her to help me with her brother. I don't want to put that on her. I've heard so many stories about children putting off their dreams to care for their parents. Although commendable, I don't want to put her in that situation.

 

And, of course, I think about the worst case scenario of dying and leaving them here by themselves. If it was just me, I could accept that better. But it's not and it terrifies me! :crying:

 

I will continue to be involved in the forums, because you guys have been great - very helpful and inspirational.

 

Thank you again, Joelf!

Felicia

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Hi Felicia,

 

Not all medications are all that toxic, although with many of them the doctors like a monthly blood test or two, just to make sure everything is going OK. If you feel that you should be getting other treatment you've always got two courses of action: 1) explain your concerns to your doctor and ask for a clear explanation why you are not being treated at this time or 2) seek a second opinion and if you think it is warranted change doctors. wink.gif

 

Now, about this dying business - sure, some of us do, but not nearly as many as some of the research articles, etc. would have you believe. There are a lot of us here on the Forum who have beaten the reported statistics and continue to do so quite nicely. One of our members knows another scleroderma patient who is in her 90's. I'm soon to be 63, have both pulmonary fibrosis and pulmonary hypertension and believe that I am incredibly healthy. I keep telling my doctors things like "I'm the healthiest person you'll see today" or "I plan on attending your retirement party (they're mostly about 20 years younger than I am)."

 

In dwelling on all the negative possibilities you are causing yourself a lot of stress (bad stuff, that, & really toxic) and wasting days you should be enjoying. Worrying is like buying insurance on a house you don't own.

 

I'd recommend that every time one of these frightening, negative thoughts intrude into your mind, say firmly to your self "NO!" and go accomplish a task you don't like (in my case it's usually cleaning the bathroom). I found my mind was a bit like a Border Collie puppy - it needed a lot of training, a lot of positive reinforcement (I'm going to live to be as old as my mother (89) and as wrinkly, stubborn, and independent as she is) and a lot of distracting (the bathroom's clean, what's the fridge like?!) For a while there I had the house so clean my kids thought I had been body snatched! Now I've got myself calmed down and accepting that while I will die, because everybody does, I could just as easily be run over by a bus as die from scleroderma. I'm often obnoxiously cheerful and the house is back to its normal untidy state.

 

So, Sweetie, get a grip (as my husband would say) and go bake some cookies for your kids. Even better, do it with them. Baking cookies with a 4-year old is wonderful medicine!


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi Felecia,

 

My Rhuematologist, gave me Plaquenil on the first day he saw me. I had symptoms of Raynaud's, GERD, and fairly bad joint pain, along with significant blood work showing that I had scleroderma. Plaquenil can cause problems with vision so I have to have regular eye exams. I've been on it 10 years and no problems!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Felicia ,

 

I want to welcome you to the group and comment on the fact that your doctor doesn't want you on other meds because of your bipolar meds. My own son was on meds for OCD (Lexapro) and Risperdal (for SIB - Autism) prior to his diagnosis of sineScleroderma/UCTD. He was started on Plaquenil and it did not interfer with his 'brain meds', as I call them, and his symptoms subsided after several months. Also, the same autoimmune response that is attacking your body can mess up the chemicals of the brain --- causing autoimmune depression. I would strongly suggest that you see a Sclero doctor and a Psychiatrist that is familiar with autoimmune diseases.

 

Take care, Everyone.

Margaret

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Hi Felicia,

 

Welcome to our world. Please don't be scared. I was just like you, we all were. I was given the diagnosis last year, and like all who have replied earlier, I totally agree with them. But one of the most important things is to get a good rheumatologist. If you're not happy, see your family doctor and tell him your concerns and ask for another opinion. These relationships for us are not counted in months but years and are VERY important. I've been put on immune suppression early, as was advised earlier the sooner treatment is started the better the chance to prevent further damage to our delicate bodies. Take control of YOU and what YOU NEED. It's your body and your right to ask for the best care available for you.

 

Hugs and warmth,

 

Lynn :emoticons-yes:

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Hi Sweet, Lynn, & Margaret -

 

Thank you for your thoughts and information on the med issue.

 

I had an appointment with my rheumatologist yesterday. He evaluated me and looked over my labs and said that my disease does not appear to be progressive right now. However, we need to continue monitoring for internal organ involvement.

 

I told him about this forum and the information I received about the meds. He told me if I wanted to (but he wouldn't recommend it at this time), we could look into some meds. He just doesn't feel it's necessary at this time. I guess I'm okay with that, for now. He is very thorough and I don't have any complaints about him. He's okay with me talking to him openly and frankly. He always addresses my issues and concerns.

 

I only have skin involvement right now. It hasn't really gone past my hands, if that makes sense. My skin is getting really tight there but minimally everywhere else. I have darkened skin on my right shoulder and a little on my right. My forearms are darkening a little but not so noticeably. The skin is not tight.

 

He was a little thrown when he saw how much my skin tone has changed since my last visit. He said he didn't expect that much change. I went from a little spot on both my back and chest. Both places have expanded greatly. My chest is splotchy (I'm dark, so the spots are tan) almost to the entire width to my shoulders. My back is a different story. It went from a little butterfly look right below the nape of my neck to my entire upper back a consistent tan color - no splotches.

 

I'm not sure what this means and was afraid to get an answer from my doctor, so I didn't ask. :unsure:

 

Any thoughts?

 

Felicia

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Hi Amanda -

 

Thanks for the information, if I haven't already thanked you.

 

I had an appointment with my rheumatologist yesterday and told him about the study. He listened but also said there are some studies that show that statistic, but he always works on the premise that no matter what race or ethnicity, he takes into account the possibility of all internal involvement. He doesn't treat anyone more aggressively than the next.

 

He also said that if I wanted to do more tests with that in mind, he will do it - whatever I'm comfortable with. He wants me to come in for follow-ups every 3 months or so. He also ordered a chest x-ray and I'm waiting to hear back from him on the results. Based on the lab work and my letting him know that I'm not having any trouble breathing, he thinks I'm safe. I told him I was comfortable with his decision as long as we are diligently keeping watch over it.

 

What do you think?

 

Felicia

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fjperry,

 

My scleroderma doctor is at Johns Hopkins. He too says the sooner you get treatment the better. I could hardly walk when I started seeing him. My disease was progressing so fast. He started me on Cellcept which slowed the systemic scleroderma (SSc) down and put it into remission and has reversing most of the past damages. I have now been on it for 7 years. and in fact have tried to come off of it and the scleroderma comes back. So I am on it for life.

 

All of this is to tell you, there is much hope, just find a good Scleroderma Specialist....

 

alice

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Hi again... I'm keeping an eye on your post felicia and in reply to the last one after your visit to the rheumatologist,and the reply that he gave, oh we could look into treatment if you want to, am sorry but if you've had symptoms for probably 7yrs and you've skin tightening and other problems,how many more symptoms or severity of them is he going to let you have before helping you! If it was me, I would be asking /pleading for medication to try and halt it now, I don't mean to be alarmist here but seriously, how bad do you have to get before he says oh well, I think we should treat you now, please don't be fobbed off felica, ask for the help you deserve. warm hugs lynn x

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Felicia, it sounds like your disease is progressing.

 

From my experience with doctors/health care you must be proactive about your care. Don't be afraid to ask questions and don't be afraid of the answers you'll get. If you know, then you can deal with the issue. If you don't then you just worry.

 

I went to 3 specialists before I received a correct diagnosis.

 

Good luck!

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Hi Felicia,

 

The world of scleroderma does seem a very frightening place at first, until you find a forum like this and you realise you are not alone and you are not about to die. I was diagnosed with systemic sclerosis about fifteen years, at the time my General Practitioner dismissed it as something that would affect my skin when I am older and left it at that. Last year things kicked off a bit and the S word was mentioned again and the rollercoaster ride started. At first I was frightened when I realised for the first time what I had really got, (I didn't have access to a computer in the 1990's) but then it suddenly struck me that I had had the disease for at least fifteen years possibly longer. With acceptance comes some sort of peace of mind, I have it and I can't change that fact, so learning to live despite it, is the key.

 

As to dying, I seem to remember reading somewhere that more women get this disease, but more men die of it, so on a positive note you are in the right gender group, (as if we didn't know that anyway girls!)

 

You take care and try not to worry, worrying will not make it go away, it will only make you feel worse. So chin up and kick butt!!!

 

Cotton wool Hugs

 

Sandy B

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Hi Lulu -

 

When you say that you saw 3 specialists, what kind?

 

I've been to a number of specialists and they all came up with the same diagnosis, scleroderma. But they all had different specialties (e.g., GI, dermatologist, endocrinologist).

 

Thanks!

Felicia

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Hello Sandy B - :)

 

Thanks for the inspiring words.

 

I've read either on this forum or other websites I came across during my research, that scleroderma can go into 'remission?'. I'm not sure if that's the correct term or not. Is that what happened to you? I just wonder what was going on during the time your doctor said it was only your skin to once you were finally diagnosed.

 

It's hard not to worry. I still haven't told my 18 year old the real story of the disease and what I'm really going through. I'm picking her up from college for the weekend and wonder if I should give her the complete picture. Or should I just update her when things start getting bad and I Have to tell her? I just don't want her worrying needlessly when she needs to focus on school. She has a full academic scholarship and has to keep her grades up. I feel knowing this may not be such a great idea right now.

 

Thoughts?

 

Felicia

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Hi Felicia

 

I really agree with all the others on here who are reccomending that you press your doctor to go onto medication. I also think it is really important to find a Sclero specialist.

 

I am not a medic but I hate to think of you fiddling while Rome burns.

 

Keep your chin up and get on the case.

 

Vanessa

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Hi Felicia,

 

My son went off to university in September. Like you I didn't want to tell him too much, just in case he decided not to go and I didn't like the idea of that happening as I want him to live his own life and not put it on hold because of me. I told him what I thought he needed to know as matter of factly as I could, I assume I fooled him because off he went.

 

May be you could put off giving her the full picture just a little bit longer (or dilute the facts down) until you have got your head around it all and you feel strong enough to deal with it yourself. If she can see that you are strong and coping with it, then hopefully she will worry less. But like us our children also have access to the internet, so there is always the danger she may do her own research and come across all the scary stuff anyway, so it is a difficult call to make and the flip side of the coin is, that it is important to have family and friends on board so that you get all the help and support you need with this.

 

I'm sure you will find the right words and the right time, so good luck and take care.

 

Sandy B

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