Sign in to follow this  
Followers 0
marsha

Back from the Rheumatologist

41 posts in this topic

Hi Marsha,

 

Hmmm....I see several things going wrong from your post. For one, your "sclero expert" appears to not be getting the message that your illness is currently progressing. Blaming it on your weight, when your weight has been stable for a decade, just plain doesn't make good sense to me.

 

If he wants to motivate you to lose weight, that's fine, but it should be discussed separate from your scleroderma issues. My doctors always mention my weight (as they should) however all their harping and all my efforts and many diets, and even my fancy electronic BMI scale didn't budge my weight one iota (until a recent gain/loss, see below).

 

I'm not sure if you also have Hashimoto's thyroiditis, but most of us do, and that alone can make weight a never ending battle, just to stay the same weight, not to mention lose it. (And if you don't have it, you should be thoroughly checked for it, including tests for thyroid antibodies even if your TSH is normal.)

 

On top of that, many of us are on medications that cause weight gain, and if you are, you should be highly commended for managing to not gain, under the circumstances and under the stress of illness, too. Check out all your prescriptions with your pharmacist. Common offenders are meds for depression, pain, high blood pressure, and even for migraines. At one time, I was on FIVE meds that all had weight gain as a common side effect, and my doctors hadn't warned me about any of them. I was recently on one (gabapentin/neurontin) that caused a 30-lb weight gain in 4 months (after being stable for 20 years) and I still have a few pounds to go on losing it all.

 

The normal course of scleroderma is for it to wax and wane; in other words, for it to get worse, and then to get better, even without any treatment at all. My general impression is that many of us have gone through repeated waxing and waning, getting better in some ways but worse in others (much like Janet's description). Sometimes the illness mysteriously reverses itself, with even all the skin hardening disappearing, however, we are usually left to deal with whatever internal organ damage and disability that has already accrued.

 

The thing is, there is no way of knowing either if or when any of us will stabilize, or even improve. It's not like there's a specific calendar of events, and there are certainly no guarantees for any of us as to which way things are going to go. I'm sure you remember Sherrill Knaggs? Before she passed away, her skin tightness had started relenting, from her head right on down, and she was doing so much better. And then she up and died (and we all miss her to this day). Whereas others of us have reached a plateau (generally not a pleasant one, but a plateau nevertheless) and others have experienced relentless progression (reference Amanda again) despite doing everything humanly possible to quell the illness.

 

I'd recommend that you visit your primary care doctor, pronto. Tell them MY concerns (print this out if you want and take it with you) about your expert not listening to you and ask them for a referral to another scleroderma expert.

 

Also take the time to review your medications with them and change any (if possible) that might have weight gain as a side effect. Ask them what a realistic weight goal is for you, considering your health and your meds. It can be terribly challenging for even totally healthy people to lose weight and keep it off. Ask for a referral to a nutritionist if you think that might help. Sometimes a tiny change (tea instead of coffee with cream, for example) can be all it takes to move the scale in the right direction.

 

Also make sure you have optimum sleep and no sleep disorders, since sleepiness and fatigue are a huge culprit for weight problems, and quite common in scleroderma, too.

 

For a good laugh...one of my doctors (years ago) said I had to go on a diet and gave me a sheet for a 1200 calorie diet. I couldn't believe she would let me eat THAT MUCH food and calories, as I just maintained my weight by eating a lot less than that. My eyes got great big as I looked at the delicious menu and I said, WOW, you mean you'll let me eat THIS MUCH?! Whereupon she grabbed the diet form back from me, and wouldn't let me see how much I could have been eating, with her blessing and encouragement. <LOL>

 

Marsha, I know it's very hard but you absolutely must pick yourself up from this and dust yourself off, because if you do nothing and collapse into depression, they will almost for sure put you on another med that will cause weight gain!

 

So a better plan would be to deal with it all, and with us by your side, you CAN do it, right? I know it's disappointing to have to start over with another expert, but I also think you need to because it does not sound to me like you are stabilized, yet. And yes, I am not a doctor, I have no medical training at all, but this should sort of be in no-brainer territory. From your description, it sounds to me like you should be partaking of occupational therapy for your hands, at the very minimum.

 

So yes, you probably are going to get better. You probably are going to get a better scleroderma expert (yes, there are bad ones, and even good ones who have a bad day, but I don't recommend you chance it again because this has put a big dent in your usually chipper style.) You probably are going to get better care for your hands.

 

You MIGHT find a way to lose a pound or two, but if you have dieted your way up to this weight, don't let sadness or worry over this pack on a few more. Resolve to change the things that you can change, and not worry about things you can't. You CAN change your scleroderma expert. You CAN work with your primary care physician and review your meds, your thyroid and your sleep. You CAN get referred for occupational therapy by your primary care physician.

 

:emoticon-crying-kleenex: Cry it out., too. It's okay to be upset by this turn of events -- anyone would be! And then use this as a sterling opportunity to improve your health, and your healthcare team.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

Share this post


Link to post
Share on other sites

Marsha,

 

Just know that me, a newbie is watching your struggle and fight. I admire your plunk and ability to keep on keeping on.

 

Learning lots too.

 

Karen

Share this post


Link to post
Share on other sites

Oh dear. I read over my last post to you Marsha, and feel like I came on too strong. My heart just ached for what you are going through, and how your new concerns were not addressed (at all) by blaming it all on your (stable, even if high) weight.

 

What I'd like to know is, how your appointment would have been handled if you had been at a normal, or even low, weight? I guess I still feel perturbed by this.

 

I just want you to know that I didn't intend my message as a way of telling you how to handle it. I should have phrased it more in the manner of, how I would have handled such a situation, or more as a gentle suggestion of a possible way to handle it.

 

Anyway, I just want to give you more warm hugs, and to let you know that we all care how you are doing....and especially, me. Let us know how things work out, okay, even if it isn't according to MY ideal plan.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

Share this post


Link to post
Share on other sites

Shelley,

 

You did not come on too strong!!! My best friend who went to the appointment with me said the same exact thing. She said I don't think he was truly listening to you and I agreed. As soon as I get home I am making an appointment with my rheumatologist and seeing what can be done. And Karen I am glad that I am still giving you some inspiration... Thank you all.

 

The fight goes on!!

 

Marsha

Share this post


Link to post
Share on other sites

Oh whew! Thanks for letting me know, Marsha. I sure hope your rheumatologist is able to be more helpful.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

Share this post


Link to post
Share on other sites

Hello Marsha

 

I have just read your post and I am so sorry and so angry. At your best eh? Then why are your hands getting worse etc?

 

I have said this before and because I have a bee in my bonnet about it I'll keep repeating it, when I first joined the scleroderma community I heard that scleroderma could plateau within 3 to 5 years but that's not my experience and I don't know anyone who has experienced that timetable. I know of people who have had major flares after 12 years, had total tight skin for 8 years and so forth and then there's me, worse at year 5 than year 1. I call this plateauing thing a medical myth, my opinion as a layperson of course! I know it can wax and wane as in get better, get worse but this 3-5 year thing? No.

 

Make the appointment with your rheumatologist and I am sure it will go much better but you might want to write to the offending rheumatologist and ask them to explain, in layman's terms, how weight affects hand dexterity and how you can be improving if your skin score isn't?

 

Too many times doctors get away with rubbish and if we choose not to complain we could always challenge what they say. I currently have complaints on the go against 2 doctors, not something I enjoy but I just had to stand up for myself. The outcome for me is almost irrelevant, it's that I stood up and said NO!

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Amanda, darling, why don't you tell us how you REALLY feel? (Just kidding!)

 

I'm relieved to see I'm not the only one who turned hopping mad about Marsha's unfortunate doctor visit. Marsha, I'm hoping your rheumatologist appointment goes a little better.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

Share this post


Link to post
Share on other sites

Amanda & Shelley,

I am still ripping over that whole ordeal!! I wanted to prove a point to myself, so I have really limited the amount of sodium intake and guess what... Yup my hands still ache!!! The other thing I was curious about, my scleroderma doctor had told me that I could NOT give blood or be a organ donor; the "specialist" I use that term loosely, told me go ahead I can? But I just read on this site that you can't? I have always been a donor and it is on my drivers license, should I take it off? I am still on vacation visiting my Mom but will be headed back to Maine at the end of this week and Can't wait to go see My rheumatologist. I will def let you all know what the outcome is.

Love to all

Marsha

Share this post


Link to post
Share on other sites

Marsha, my understanding is that having systemic scleroderma excludes you from being an organ donor. I can't imagine many people queuing up to get my heart can you? I also understood we can't be blood donors because of medications we take, here in the UK if you so much as take an over the counter pain killer you can't donate so that rules me out and you (if you were in the UK) and just about everybody else! Well that's how I understand it anyways!

 

Shelley, yup I have a way of making my feelings clear...sometimes too clear without realising it! :emoticon-dont-know: :emoticons-yes:

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi Marsha,

 

On our page, Tattoos and Blood Donation, I quote: "People with systemic scleroderma cannot donate blood." Period. End of story.

 

Body or organ donation is a little trickier. See our Organ Donation section. Basically, anyone and everyone can sign up as an organ donor and leave it up to the transplant team to decide whether or not they can use any of your various parts.

 

To keep it simple, I've signed up as an organ donor, however, odds are pretty great they wouldn't want any part of me. But I figure, that's their problem (not mine) and if anything is usable, I'd like them to feel free to use it. Of course, this is an issue near and dear to my heart, since my husband is a lung transplant recipient.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

Share this post


Link to post
Share on other sites

Marsha and Amanda, I should like to add that having systemic scleroderma I am quite sure would disqualify anyone from being a "living organ donor", which is when you give away a body part (like that extra kidney) while you are still alive.

 

In the first place, we are already very ill and shouldn't be going out of our way to doing anything to further jeopardize our health, and in the second place, with scleroderma we may eventually run out of even the spare working parts. I'm sure Miocean will second that!

 

For those reasons and more (like, we shouldn't even be donating blood), I have trouble envisioning any situation where a person with systemic scleroderma would qualify to be a living organ donor, although I suppose we should never say never.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
Sign in to follow this  
Followers 0