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Stressed over diagnosis...need some advice

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idreamofcushions

Brilliant_Rock
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Sep 30, 2008
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I will try to keep this as brief as possible and get to the point of this thread.

For the last 6 months or so, I''ve been waking up every morning with swollen and numb hands. At first I thought it was because I was sleeping in a weird position, but the problem never went away. Then a few months ago, I was grocery shopping and one of my fingers went completely white and numb. I mean, it looked the the finger on a corpse. I figured I was just really cold, like always. Of course it freaked me out, but I sort of ignored it. Well the problem has persisted and only gotten worse. Now everyday, whenever I''m cold (which is almost all the time) my fingers turn from white to blueish purple and go numb off and on and the swelling hardly goes down.

I finally decided to see a doctor about a month ago. He ran a ton of blood tests and then sent me to a Rheumatologist on Friday. I was diagnosed with a rare auto-immune disease call Scleroderma. The chances of getting this are one in a million. (Sheesh, maybe I''ll play the lotto this week) It causes a harding of the skin (mostly in the hands and feet) but can also affect the organs. I will be "high risk" when I try to get pregnant (the baby won''t be at risk, but I will be...something to do with the kidneys). There''s no cure yet. Anyway, I don''t know much about it since I just found out two days ago. I also have a secondary disease called Raynaud''s Disease which causes the body to over-react to cold, so it tries to conserve the core heat by narrowing blood vessels to the extremities (which is why I wasn''t getting any circulation to my fingers). Then to top it off, I also have arthritis. Fun. The crazy thing is I''m only 25 years old and have always been extremely healthy! It was quite a shock but my family and SO have been extremely supportive, so that''s a huge help.

Ok, so now to the point.

SO and I are going shopping for an ering in 2 weeks. Obviously, with my hands being swollen all the time I''m concerned about the sizing. I asked the doctor if there''s a "magic pill" to make my fingers go down to their normal size. She said there''s no quick fix but I can get an adjustable ring (???) My question is...what the heck is an adjustable ring? Would it look weird? Can you make any setting adjustable? SO says he will just have to get me an ering in every size! He always knows the right thing to say to make me feel better


If anyone can offer any advice on this, I''d really appreciate it!

Thanks for listening...
 

neatfreak

Super_Ideal_Rock
Joined
Feb 17, 2007
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14,167
There are a lot of options and most can be applied to many many ring designs. There's one the opens at the bottom and then snaps shut (people with big knuckles/arthritic knuckles use this one often), there is a horseshoe sizer, etc. A knowledgeable jeweler should be able to take you through all your options-or else your doctor might be able to advise you about local places to check them out too.

Best of luck, it sounds like you are handling things well and your FI is one smart man with a great solution!
 

idreamofcushions

Brilliant_Rock
Joined
Sep 30, 2008
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736
Thanks, neatfreak. I didn''t know there were so many options! I''ll definitely ask the jeweler about them, especially the horseshoe sizer (heehee...mostly bc it sounds hilarous and I''d love to see his expression if he has no clue what I''m talking about


But, yeah, I like SO''s solution best
 

blondebunny

Brilliant_Rock
Joined
Feb 18, 2008
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1,580
Oh No Im sorry... that doesnt sound like any fun :( Its weird you mention the turning blueish thing... I have the SAME thing... randomly my toes or finger will go numb and turned a reallly blueish white color like a corpus.. I dont think I noticed them swelling.. I always just thought it was me really cold.. but its weird it always happens and no one else gets as cold as I do!?!? Geez got me wondering If I should go to the DR now!!!

I definitely know how frustrating it is to have something wrong and it not be able to be fixed :(

defintely take your FI up on his ring for every size.. i like that idea!!! :)

Hopefully you can find something you like and will work for you!

Your in O-town right?? What jewelers are you going to go too?
 

daydreamer

Rough_Rock
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Feb 22, 2009
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57
I have no advice, but wish you well and hope your symptoms come under control quickly.
 

idreamofcushions

Brilliant_Rock
Joined
Sep 30, 2008
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736
Thanks blondebunny, and sorry to freak you out about your hands! I''m sure you''re fine but if you''re interested, check out this site...

http://www.mayoclinic.com/health/raynauds-disease/DS00433

I''m actually in Melbourne so about 45 minutes from O-town
We''ve never gone ring shopping there (unless you count last weekend when we went to the Florida Mall and stopped in to see what the mall jewelers had
) We''re going to Naples, FL because SO''s family lives there and they have an amazing jeweler (his sister got her ering from him).

In addition to the multiple ering suggestion, SO also said I absolutely have to get a new shoe collection since I need to keep my toes warm and I own mostly flip-flips and open toed shoes. That made me happy in ways I can''t describe!


Thanks, daydreamer. I''m just hoping the symptoms don''t get worse! But I have an Rx that''s supposed to help with pain and swelling...so we''ll see
 

ladypirate

Ideal_Rock
Joined
Jul 30, 2007
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4,553
Hi IDOC. One thing you may want to do is contact your local Arthritis Foundation--they will have information on Scleroderma and Renaud''s and may even have support groups in your area. I''m sorry you''re going through such a tough time.
They also have a drug guide and a supplement guide that will have information that may help.

As far as the ring goes, they do have arthritis shanks that work kind of like certain watches in that they get bigger to fit around the knuckle then clamp down to fit your finger. I''ve considered doing that for right hand rings because of a joint injury I sustained to that hand. *Hugs* Again, I''m sorry about the diagnosis, but I hope they are able to get it under control now that they know what is going on!
 

Kaleigh

Super_Ideal_Rock
Joined
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29,570
Date: 2/22/2009 9:23:26 PM
Author: ladypirate
Hi IDOC. One thing you may want to do is contact your local Arthritis Foundation--they will have information on Scleroderma and Renaud''s and may even have support groups in your area. I''m sorry you''re going through such a tough time.
They also have a drug guide and a supplement guide that will have information that may help.

As far as the ring goes, they do have arthritis shanks that work kind of like certain watches in that they get bigger to fit around the knuckle then clamp down to fit your finger. I''ve considered doing that for right hand rings because of a joint injury I sustained to that hand. *Hugs* Again, I''m sorry about the diagnosis, but I hope they are able to get it under control now that they know what is going on!
I am so sorry IDOC. ladypriate gave you great advice, she works in this field. Best of luck, will be praying all goes well for you.
 

misskitty

Brilliant_Rock
Joined
Aug 20, 2008
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1,691
Oh, IDOC, I''m so sorry. I have Raynaud''s, too, and I whine about that, but I can''t imagine the rest on top of it
. I hope the Rx helps you out, and that you find a good solution for the ring!
 

LtlFirecracker

Ideal_Rock
Joined
Feb 29, 2008
Messages
4,837
I am so sorry to hear that you got diagnosed with this.

I really think neatfreak gave you some good ideas about rings, more than I would know about.

I have primary reynauds (meaning that I have reynauds without an associated autoimmune condition), so I feel you on that. The reynauds itself will not effect your ring size (but the scleroderma might). I avoid cold as much as possible (i.e. I don''t ski, or do other snow activities). When I am in a cold environment I always wear one extra layer than most people wear. I always wear a hat if it is less than 32 degrees because you loose most of your heat from your head. Gloves are a must in the winter (the steering wheel takes forever to warm up). I do wear sandals during the summer, but I always wear shoes with socks in the winter. The thing that most people don''t think about is that reynauds can be triggered by a change in temperature. This comes up for me a lot in the summer when it is hot out side and I walk into a place that has the AC on at 65 degrees. Therefore, I always have a sweater even if it is 90 degrees outside. Also, there are medications if your symptoms get really bad.

If you have somewhere nice to go, and you want to minimize the blue fingers, a manicure might help. It at least covers the nails which is what most people notice on me first.
 

mrscushion

Ideal_Rock
Joined
Nov 15, 2008
Messages
3,309
IDOC, I am so sorry to hear of your triple diagnosis. At 25 and perfectly healthy, that''s indeed hard to swallow! I hope your meds to their job and keep your symptoms at bay. All my best to you.
 

gryffindor

Shiny_Rock
Joined
Nov 21, 2008
Messages
156
I don''t know about adjustable rings, but I want to wish you the best for your health. Your FF is so supportive, that is great!
 

jcarlylew

Ideal_Rock
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Jun 27, 2008
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3,899
i am so sorry to hear about this - but your guy sounds like an absolute sweetheart!!
 

idreamofcushions

Brilliant_Rock
Joined
Sep 30, 2008
Messages
736
Thank you so much, ladies. Your kind words and advice mean so much to me!

Ladypirate: Thanks for the useful information. I just found out there''s a support group in my area so I will definitely check it out.

Misskitty and Ltlfirecracker: Sorry to hear that you also have Raynaud''s. Thank you for sharing your experiences with this disease, it certainly makes me feel like I''m not alone
. Since I found out about it, I have been much more cautious about exposing my hand to the cold. Fortunetly I live in FL, but this also means I have to deal with blasting AC. Hopefully nobody will think I''m too weird when I bust out my scarves, mittens, and fuzzy socks!
 

Dreamgirl

Ideal_Rock
Joined
Mar 25, 2008
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5,070
I don''t have advice for you but I''m sorry to hear about all of this trouble....
 

LabRatPhD

Shiny_Rock
Joined
Jan 30, 2009
Messages
448
idreamofcushions - I am very sorry to hear about your diagnosis! Your SO sounds like a total sweetheart!
Best wishes to you!
 

rainwood

Brilliant_Rock
Premium
Joined
Mar 29, 2005
Messages
1,485
I''m so sorry to hear of your diagnosis. My niece has all three of the diseases you''ve been diagnosed with as well as a number of other auto-immune diseases. She was diagnosed at age 10 and is now 27, and soon to graduate with a teaching degree. It''s not always easy for her, but she''s doing well and I''m sure you will too. Best of success in your e-ring search.
 

goodfun7580

Shiny_Rock
Joined
Aug 9, 2007
Messages
120
IDOC, I''m sorry to hear about your diagnosis! I hope things improve for you! I hope you enjoy Naples, its beautiful here right now!
 
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