emmie

Met My New Docs

8 posts in this topic

Hi friends,

 

I thought I would post an update. I'll warn in advance that it'll be long.....

 

Anyway, I've met my new rheumatologist and my new neurologist twice now. I think we'll be able to work together. I've met my new endocrinologist; he'll do fine. I meet my new pulmonologist next week; time for the pulmonary function tests, CT scans etc. The rheumatologist referred me to a gastro because I've been having tummy problems for several months. She also referred me to a dermatologist. She wants some skin biopsies and I have some fingernails that are growing strangely so she wants the dermatologist to look at them. I meet them in July.

 

I see the neuros for the Hashimoto's encephalopathy. That is the very rare neurological complication of hashimotos thyroiditis. (some researchers want the name changed to SREAT: steroid responsive encephalopathy associated with autoimmune thyroiditis). Anyway, some of my symptoms have gotten slightly worse; one of the symptoms that bugs me the most popped up again; I hadn't had trouble with it since Oct. And a couple of the symptoms have gotten worse.The neuros also monitor the seizures. (the seizures are a result of the encephalopathy.) So, the neuros are going to try to get the insurance company to agree to cover 5 days of IVIg infusions. I'm not too optimistic because this disease is so rare and it's an off label use of IVIg. I had them once over a year ago and they helped. Then the insurance quit paying. I haven't had any since. We have new insurance now so it's like starting all over. If I respond well like I did last time, we'll try for maintenance infusions.

 

Our daughter was supposed to be getting married this weekend...well, the wedding was called off 4 weeks ago. So, she and our 14 month old grandaughter are moving in with us. Our daughter has applied and been accepted to a university nearby. She will be returning to get her teaching credentials. Can you say stress? Did I mention that one of my symptoms with the encephalopathy was a much lowered threshold for coping with stress? Another symptom is that I need a ton of sleep or I simply melt down....

 

ok. sorry to turn this into the saga of my life. I didn't mean it that way. I actually just figure that for some reason I have been given a very interesting life. (there's lots of other "stuff" in it as well, of course). So, I believe that my job is to live it the best I can. I get angry, I get sad, I miss the me that used to be both physically (I was very fit and active) and mentally (encephalopathy can do strange things to your brain , I miss my work more than I can say, I miss being able to drive, I have a fear of socializing now and I hate that, I have pity parties etc etc etc. I do allow myself to feel these emotions. They are legitimate. But I don't wallow. Mainly because I enjoy laughing and being silly and fun and ridiculous and naughty more. :P

 

This post took a lot of brain power. I'm glad to be part of this group. I may not post much--actually, I seem to go in fits and starts. Must have to do with how I'm feeling or something. However, I always read. And I always keep everyone in my thoughts and wish the best for all.

 

xoxo emmie

 

PS Barefut, if you read this, yes, by all means, I have times of feeling alone, scared, isolated etc. But I guess you picked up on that :rolleyes:

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Hi, emmie. So nice to hear from you and especially to get such a thorough report. Glad you are settling in with your new set of doctors. It took me two years to get changed over when I moved. Wow, the encephalopathy sounds like a handful all by itself without all the other stuff. It must be incredibly frustrating to deal with. I wish you boatloads of patience with your returning family members. Not sure how well I could cope with that. Please stand your ground when it comes to carving out quiet space for yourself and let them know your limits. It is so easy to do just one more thing until you are doing it all.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi Emmie,

 

I second what Jefa said. Please take time to rest with your new family on board. I am so sorry the wedding fell through but better now than later. That will be quite an adjustment for you. I am glad your doctors are really paying attention to you. You have alot going on. Good luck with everything. Susie54

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Hi Emmie,

Thank you for the update. It will take some time to really get to know your new doctors but they do sound like they are willing to work with you and help you. As for your new living situation, you definately need to set limits and put yourself first! You know you the best, so please take care!!!

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Jefa, Susie, Lisa and Sweet,

 

Thanks for your encouragement and advice. You are all right; and my daughter and I agree that we need to get some limits and boundaries in lots of areas understood. She's 27 and been "on her own" for almost 6 years now; if you count the years away at college, she's been out of the house the better part of the past 10 years. This will be an adjustment for all of us, especially since she is returning as a mom!

 

My daughters are pretty good in regard to recognizing that I'm not the mom of yore....and I'm getting better at reminding them when they forget :-)

 

Onward, girls and boys! Tomorrow is another day.

 

xoxo emmie

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Emmie,

I was wondering where you had disappeared to. You've been busy in every aspect of your life! WOW! I'm glad you've got some new doctors. It sounds like they are taking a fresh look at things. I hope you get approved for those IVIg infusions. You and I both know how valuable "physically" those are.

 

As the others have said - family or no family living with you - always find time for yourself and don't let people take advantage of you. You are helping your daughter out by letting her move in with you, with your granddaughter. So in return, she needs to help you out. You certainly don't need the stress of taking care of a daughter again and her baby. So stand firm. We'll be thinking of you and you know you can always come here for some venting and lots of hugs.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hey Janey,

 

You bet I'll be doing my best to hold my ground regarding self-care, etc. And we'll work things out in regard to household "chores" etc. I really appreciate the reminders in that area! I guess we all need to be reminded of that from time to time.

 

I'll let you know if/when the IVIg gets approved. Many thanks for the words of encouragement and support!

 

xoxo emmie

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