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miocean

All Is Not Well In Sclerodermaland

27 posts in this topic

Well, I've take all of your advice to heart and here is where I am right now;

 

I have a call and email in for a consultation. I had a PFT test yesterday and was very scared because I thought I might have to go on O2 again as I have been short of breath, but my blood oxygen level was 92%, my total lung capacity is 65% and my diffusion rate is up to 45%. I discussed a second opinion with my local pulmonologist and he suggested I see a lung specialist he knows at my scleroderma center. He personally called him and discussed my case. I just made an appointment for June 3rd!

 

I made an appointment for next week with my counselor. I am holding back from the non-profit that was causing so much stress, still doing my job but not getting overly involved.

 

:thank-you-2: So thank you all, my scleroderma friends and family. :thank-you-2:

 

 

Now, if all the boxes could be magically unpacked and all the paintings on the walls...

 

miocean


ISN Artist

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Hi miocean

 

I have not had the same problems that you have had with Scleroderma but I have felt very down with lesser causes than you. I have been on prescription medicine at times to help me over a crisis. What helped me was an inspiration.

 

My father was my inspiration he used to say gardening is very therapeutic. He did the heavy stuff and I found that with his direction I had time out from my condition. I started with hairy end in and Dad helped me and guided me to have some gardening skills, I think.

 

Time out by going to the beach is a great thing and therapists are great to.

 

Beach envy back to the garden

 

Gil

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Hi Miocean

 

I am sorry be it a bit late popping in! I'm sad you've felt low and below par, but, as the others have said you have had more than your fair share of the battle..but today you are winning!. When the pressure goes and your mind and body are not in fightining mode..that's when a form of anti-climax kicks in and you feel like you are crumpling and unable to function.

 

Please do not be so hard on yourself for that "lost" feeling my love, give yourself license to feel battered and a little bruised it's normal,if walking on the beach or sitting quietly by yourself with a good book..in fact anything that gives you pleasure then allow yourself to enjoy it; it's time for you to re-charge and take stock and "heal".

 

If medications can help then so be it, it's all in your hands to choose which road you wish to travel, but we are all here to listen, help and support you were we can, never forget we share each others battles the highs and the lows and at some time we all feel as you do.

 

Keep smiling ok and here's a warm hug from me :emoticon-hug:

Lynn

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I just wanted to let you know I am doing better without the medication. :VeryHappy: In addition to the counseling session Monday and the appointment with the lung specialist at my center June 3rd, I have been able to get an appointment another scleroderma expert for June 10th! :emoticons-yes: Now I just have to gather my medical records. I have copies of all tests from 2010 to now, with the CT Scans from 2008 until now. I will be able to get copies of a few other things I need, I don't think it is necessary to go years back. I haven't kept all my records, when I was on dialysis, they kept all my tests, which had to be done yearly, and would forward them to the transplant centers so the first place I will go is my nephrologist, who has yet to computerize and I know I have 2 files about 4 inches thick there. My primary has things and so does my cardiologist.

 

Do you keep copies of everything? My blood work alone for the past year would be pages. How do you manage your files? I have a friend who kept everything, yet she was unaware of a standard test they run after a kidney transplant (BK virus), 3 years out said it had never been run on her, yet she goes to a center that specializes in that virus. :emoticon-dont-know:

 

Thanks again,

miocean


ISN Artist

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Hi Miocean,

 

That is good news that you're feeling better without having to increase your medication and also that you've managed to get an appointment with a scleroderma expert within the next 2-3 weeks. :yes:

 

I do keep copies of all my medical notes, blood tests and future appointments in a ring binder; this has the advantage of easily being able to refer to them should the doctors or hospitals contact me. Also, I deal with three different hospitals plus my general practitioner (who is always the last to be told about anything, poor soul!) and unfortunately they are all notoriously bad at informing each other of the treatment I've received. However, my notes are obviously not nearly so copious as yours and I realise that it might be quite difficult for you to cart around a tome the size of Tolstoy's "War and Peace" every time you have a consultants appointment!! wink.giflaugh.gif Perhaps you should just take the parts of your notes that are relevant to that particular consultation? I suppose even that would be a large amount of paperwork to deal with!

 

I do hope your consultations on 3rd and 10th of June go well and I'm so glad that you're feeling a little better. :flowers:


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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I'm with Sweet and want to give you {{{Big Hugs}}} too, miocean!

 

I believe it's a good idea to keep all of your records, with regard to your medical information, especially in your case. It's very helpful for the doctors, in order to help you if/when they work in a facility outside of the ones you frequent. While in the exam room, let the nurse know all that you have (with you) and she may then give the dr the information prior to visiting with you. Otherwise, you may ask the dr what he/she prefers to see. I've had doctors run copies so they can have the hardcopies for future reference. However, it seems most offices now have everything computerized, which is so great! Makes it less stressful for the patient and the dr.

 

I am SO PROUD of you...You are a shaker and a mover :terrific: ! I'm glad you have everything set up and will look forward to hearing how your appointments went.


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Re: boxes. I have moved a lot in my life and can tell you that letting boxes sit for awhile has one good result. By the time I got around to unpacking, I had forgotten the things that were in them. It was like holiday when I opened them and found so many wonderful things. The nicest part is I usually loved everything I "got" because they were just what I wanted. At least that is what I thought when I bought them originally.

And pretty material over boxes make lovely end tables. And who knows what boxes hide behind the sofa. So many options.

I'm glad you feel more upbeat.

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Hi Miocean,

 

Years ago, my doctor had me compile my medical history and showed me how to organize it. He had me break it down into major bodily systems or areas, such as Skin, Skeletal, Neurological, Surgeries, Family History, etc. with a master summary of findings for each section, plus a master summary using each of those main section sheets, plus an even shortened one-page overview of it all.

 

He emphasized getting it all boiled down to one simple overview page, with the main summary pages by system attached. After that, hardly ever did anyone ever ask to see any of the actual documentation which I had labored so long and hard over.

 

I had a binder only for lab work and biopsies, with summary sheets, because these things ended up scattered about the main album and then you couldn't see them at a glance.

 

Every section and page were numbered, for example, Skeletal (bones, joints, muscles -- things like carpal tunnel and tendonitis) being assigned Section 12 and then page numbers, such as 12-1 and if I had to insert pages later, then 12-1a. The master summary sheet would then have the page numbers for each assorted diagnosis. I would list only the date it was first diagnosed, and the starting page number, and what center or doctor diagnosed it, the treatment(s) or surgeries, along with an extremely brief remark, such as "No problem since surgery" or "Side effect of medication."

 

I also had a recap page for all surgeries because they end up scattered about the different sections; and another recap for medications, in alphabetical order, showing when they were stopped or started. To this day those summaries come in handy when I am seeing any doctor outside of my computerized clinics. Many pages would end up copied into other sections, and I'd use a highlighter for that particular remark.

 

The point of making the entire medical history with documentation is, in the end, to make it extremely easy for doctors to absorb at a moment's glance and for you to be able to pull out the relevant page(s) at a moment's notice so that you can breeze through the doctor's appointment. The more complicated your medical history, the more important it is to be able to summarize it clearly and quickly so the show can get on the road with the issue(s) at hand, rather than waste the whole appointment belaboring the history to get the doctor up to speed.

 

I've found the vast majority of doctors don't even so much as glance at the chart before seeing the patient, so it is a huge surprise to them why we are there and what we are expecting. Anyone with a complex history should beware that even the best doctor is likely not up to speed at all -- about anything -- and this can easily derail an entire appointment for those who are not on computerized systems. And even then, never assume that they've read your computer chart; they are usually trying to eke what they can out of it while we sit there.

 

The main summary sheet is especially appreciated by my doctors. They adore getting "just the facts, ma'am" and having all the important things listed plainly, clearly, and simply, helps them enormously in providing the best advice.

 

Good luck on putting things together. Let us know what you come up with, won't you?


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.

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Miocean,

 

I'm a little late in the replying, but thinking of you, none the less!! I hope all is going

better. I know there are days when I feel completely overwhelmed, time to just let

those things that are less important...stay that way for a while...Hope things are going

better!!! HUGS HUGS HUGS!!

 

susieq40

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