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Biomarker for Diffuse Scleroderma skin has been discovered!


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Saw my scleroderma doctor yesterday and not good.


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#1 quiltfairy

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Posted 10 March 2016 - 12:02 AM

I had emailed my doctor about 3-4 days before yesterday and they got me in right away.

 

I have red streaks going up my fingernails that is a symptom of either heart or lungs or something. The last time they did other tests they found little nodes in my lungs, so now I have to see pulmonary doctor then they do the regular cast of everything but this time they want me to see the pulmonary doctor first and then they want to scope my throat. I didn't know this, but my doctor said that part of my falling dizziness and muscle strain could be caused by lack of oxygen.

 

I have a nurse with this new health place, but she is not a very good nurse as she was supposed to send my stats down with me to the doctor. I don't know what she was thinking but she took my med list instead of my stats. I will have to talk to the head of nurses today about that time the doctor was pretty upset when he didn't get what he asked for. What my doctor thinks is that microbes have gone into my throat and my lungs and I don't know what to do about it, although he said there were medications that would help. After I see the lung doctor then they're going to scope my throat and do a bunch more tests on me; it just doesn't sound like a lot.



#2 Joelf

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Posted 10 March 2016 - 09:18 AM

Hi Quiltfairy,

 

I'm very sorry to hear that you're having more problems and I do hope that your doctor will be able to prescribe some medication to help you and improve things for you.

 

Best wishes,


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#3 Amanda Thorpe

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Posted 10 March 2016 - 12:40 PM

Hello QF

That don't sound good, for sure. The up side is tests=answers (mostly) and answer=treatment (mostly).

Please keep us posted and take care.
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#4 greypilgrim256

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Posted 15 March 2016 - 02:53 AM

Hi quiltfairy. Sorry about your recent complications.  Can you explain more about your fingernails.  I occasionally get these little black lines that look like splinters under my finger nails.  Is that what you are talking about or are they different than that? 



#5 quiltfairy

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Posted 15 March 2016 - 08:30 AM

My scleroderma doctor did not say much about it but could be signs of lack of oxygen.    

 

I see a lung doctor next month.  

 

He also said it could be splinter haemorrhages.   He also said I should watch the color, because they can develop small blood clots.

 

I suggest you see your scleroderma doctor.

Good luck



#6 Shelley Ensz

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Posted 16 March 2016 - 01:30 PM

Hi Quiltfairy,

 

I'm sorry that you are having additional health problems. Here's an interesting article on Nail Abnormalities: Clues to Systemic Disease.

 

I hope you can get some quilting done...between doctor appointments.

 

:hug-group:


Warm Hugs,

Shelley Ensz
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#7 quiltfairy

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Posted 16 March 2016 - 02:54 PM

Shelley, thank you for the link; it was most interesting.

I am working on a baby quilt; I am going to be a great aunt in September. It is going slow but I am determined to get it done and sent off by then.

#8 Joelf

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Posted 16 March 2016 - 08:38 PM

Hi Quiltfairy,

How lovely that you are going be an great aunt in September.

May you have lots of pleasure with your new great nephew/niece.

:hug-group:

Best wishes,

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#9 quiltfairy

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Posted 19 March 2016 - 03:08 PM

That is just the beginning and I am going to be a grandma.This is number five; the first four were adopted.

It is a long story, but I am going to do everything in my power to help my son and his girlfriend stay away from DHS.

#10 quiltfairy

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Posted 20 March 2016 - 05:02 PM

Yes, Shelley. I just finished a baby quilt top. After the first I will get the batting and backing.

I think the flannel against baby's skin; what do you think?

#11 Shelley Ensz

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Posted 21 March 2016 - 10:49 AM

Hi Quiltfairy,

 

Flannel sounds delightful!  Did you know research shows that babies prefer to look at purple and blue? So if you figure out a way to incorporate one or both of those colors, it will probably be their blankie-of-choice forever, besides the fact that it will of course be made by the best great aunt of all time!

 

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Shelley Ensz
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Hotline and Donations: 1-800-564-7099

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

#12 quiltfairy

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Posted 21 March 2016 - 01:21 PM

Ah, yes there are many colors in the quilt. It has 16 blocks and each of them are different. There are green, purple, blue, red, orange, pink and on and on. So I think the baby will enjoy it but thanks for the color suggestions. Oh it is going to be a girl. Her name will be Elizabeth Lynn. I think that is a lovely name.
We do not know the gender of the grand baby yet. I hope for a boy but a girl would do just fine.

Thank you and bless you.
PS When I figure out this new computer I will post a picture of the quilt.

#13 quiltfairy

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Posted 09 April 2016 - 04:23 PM

Sad and happy news makes my emotions go wild.

First sad, my son's fiancé lost the baby. Now the good news it is not cancer but sometimes it is so hard to be happy with this strange disease. I did find further news as to what the polyp might be; my older brother had TB as a young child and it might also mean that I also had a mild case. My scleroderma doctor is going to do some further testing.

My dad and older brother have been going with me; dad was not able to for the past year as mom was so ill. She passed in August and I think dad is enjoying getting out of town. The thing I want to say though, is when the doc said it was not cancer he had the biggest brightest smile on his face that I had not seen in a long time since mom got so ill.

With that bless you all and may you all have a great weekend.

#14 Joelf

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Posted 09 April 2016 - 08:08 PM

Hi Quiltfairy,

I'm so sorry to hear about the loss of your son's fiancé's baby.

That is, however, excellent news about your results; obviously it would be better if you didn't have any problems with your lungs at all, but at least it isn't the dreaded cancer and you must feel incredibly relieved.

Thank goodness for small mercies!

Best wishes,

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