Jump to content


Did you know that exercise increases inflammation in systemic sclerosis?


Photo

Losing it!


  • Please log in to reply
15 replies to this topic

#1 Karenlee

Karenlee

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 381 posts
  • Location:Long Island, New York USA

Posted 30 April 2008 - 11:33 AM

Just needed to get that out. I'm lost in a sea of doctors, appointments, tests, opinions and unanswered questions. I know you all know the feeling, and I'm not trying to say I have it worse or anything like that. I just needed to let that out. :(

Anyway, it's a great feeling to know I can come here and whine to my friends. You are all awesome in your own ways and thanks for letting me get at least some of that off my chest.

Karen

#2 truman

truman

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 625 posts
  • Location:NJ

Posted 30 April 2008 - 11:44 AM

KarenLee:

If at all possible, take a break from doctors for a couple of weeks. You need the rest. I postponed my skin graft from Monday to 5/12. I need to get over these hives first. We all need a break every now and then.

Postpone a couple of non urgent visits and get away for a long weekend with the husband. :)
Tru

It is what it is...........

#3 Snowbird

Snowbird

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,008 posts
  • Location:Canada

Posted 30 April 2008 - 12:35 PM

Yup we like whine....and cheese too! I agree with Tru...run away with your husband for the weekend and try to get lost in some fun... :)
Sending good wishes your way!

#4 peanut

peanut

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 738 posts

Posted 30 April 2008 - 01:12 PM

Hooray for Cheese & Whine. Me too. Me too.
Is there time for fun like Snowbird suggested? Maybe a pedicure.
Do something for yourself to give yourself a big hug.

Hug from me,
peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#5 omaeva

omaeva

    Silver Member

  • Members
  • PipPipPipPip
  • 161 posts
  • Location:CA

Posted 30 April 2008 - 02:28 PM

*BIG HUGS*

#6 Karenlee

Karenlee

    Senior Silver Member

  • Topic Starter
  • Members
  • PipPipPipPipPip
  • 381 posts
  • Location:Long Island, New York USA

Posted 01 May 2008 - 01:54 AM

Thanks everyone! I love the whine and cheese idea :P
I fell pretty bad this morning. I woke up at 4 am last night, fell back asleep around 5:00 and had some pretty crazy dreams. Then I woke up with my "friend". :(

Tru I cancelled my blood work appointment that I had today. Thanks for the advice, because that is something that I can put off for now. As for the other 10000 appointments, I'm going to spread them out over the next month. I made the mistake of booking back to back appointments yesterday, just trying to get them out of the way and it knocked me for a loop. That and stopping by to see my Mom. Our relationship is strained to say the least so I think the stress level was code red yesterday Lol

Hubby will be away this weekend but our 2 year anniversary is in June so we are definitely going away somewhere. And we are vowing no talk of illness that week.

Love you all!!!
Karen

#7 Guest_Sadie_*

Guest_Sadie_*
  • Guests

Posted 01 May 2008 - 09:25 AM

Hey Girl, I'm so sorry to hear that you're having a rough time. Glad to hear that you are going to do the blood work another day. Take it easy today. Maybe find a book that you want to read or rent a funny movie. I know how you feel about having so many appts. It can really tire a person out! Email me if you want to talk.

Sadie

#8 Gidget

Gidget

    Silver Member

  • Members
  • PipPipPipPip
  • 201 posts

Posted 01 May 2008 - 01:08 PM

Be glad your doctors are interested. My first rheumatologist told me to take Advil. He couldn't even be bothered to run an ANA test as my physical was great and even when I finally told him I had a diagnosis of sclero, he couldn't believe it. Top 10 rheumatologist in CT - What an idiot. Gidget

#9 smac0719

smac0719

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 377 posts
  • Location:Tampa, FL

Posted 01 May 2008 - 01:18 PM

Hugs and kisses to you Karenlee. :D I like the previous advice. I too get overwhelmed with appointments and I have to try to schedule them around work! Find yourself a good comedy to watch.
I may have Scleroderma, but Scleroderma doesn't have me!

#10 Karenlee

Karenlee

    Senior Silver Member

  • Topic Starter
  • Members
  • PipPipPipPipPip
  • 381 posts
  • Location:Long Island, New York USA

Posted 02 May 2008 - 01:12 AM

Gidget: I am grateful that I have a crew of good doctors looking after me. I just have so many of them I can hardly keep up, but I'm managing. Even though I have each sending reports to eachother, (after repeat requests by phone to the NA's that assure me that they sent them, but had not) they all seem to be ordering ones that have already been done plus some new ones to boot. Again, this thread was just to blow off some steam and not to seem ungreatful. I am sorry you had a doctor that was un-interested in your care and just blew you off. I hope you have found a better doctor to take care of you. Every one of us here deserves the best care.

smac: thanks for the advice. I was watching cartoons all night. I know it's juvenile but it takes me back to my young vibrant healthy days and I get lost in it :P

And a big hug and thank you to everyone who posted.

((((HUGS))))

Karen

#11 Peggy

Peggy

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 635 posts
  • Location:Minnesota

Posted 02 May 2008 - 05:06 AM

Good for you for watching cartoons and doing what you have to do to feel better. I find that I need to do something that makes me feel good about myself or what my life has become or I start getting depressed. Each day is a struggle and I tell myself to find the good in it and not dwell on the bad. If watching cartoons does that for you then great!

Warm hugs and I hope today is a good day for you!!!!!

Peggy

#12 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 02 May 2008 - 06:46 AM

Karen...
Back atcha... All the support you were showing me... is definitely there for you...only posting a bit late... reasons on previous posting :rolleyes:
I'm so glad we all have each other to "talk to"... that's the GOOD part!

Oh boy.... I'm late for the whine and cheese party :o It IS Friday though, if that's of any significance to anyone! lol

tru, I agree! Great idea... about cancelling non-urgent app'ts...
My saving grace... is the doses of grandsons I'm getting on a regular basis. The 3 mo-old, Brayden... is really talking and so badly wants to get up and run! He just popped through a tooth last Friday and it looks like that other tooth is going to break through today! His mama brought Papa mini muffins to snack on... oh how she knows the way to HIS heart!


Hugs,
Susie
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#13 Karenlee

Karenlee

    Senior Silver Member

  • Topic Starter
  • Members
  • PipPipPipPipPip
  • 381 posts
  • Location:Long Island, New York USA

Posted 02 May 2008 - 06:53 AM

Thanks Peggy. I am a kid at heart so it's fitting that cartoons mellow me out :P
And yes, there are many things one can do to cheer up. I went and had a spa pedicure last week and it was amazing. The massage alone was well worth it. Not to mention having pretty pink toes :D
I went and got my blood work overwith today. I counted 13 vials by the time they were done. I'm surprised there's any blood left in me now. You'd think Dracula had his way with me Lol

Karen

#14 linda lou

linda lou

    Bronze Member

  • Members
  • PipPip
  • 19 posts

Posted 03 May 2008 - 02:12 PM

i took time out with my 70 year old mother and sister we went to halifax, shopping...we had lots of fun and we didn't talk about scleroderma. my mother tired me out shopping,she has more energy then myself these days,,,it was a break we all need that at times, hope you and your hubby get lost in fun when you go away...linda lou

#15 linda lou

linda lou

    Bronze Member

  • Members
  • PipPip
  • 19 posts

Posted 03 May 2008 - 02:21 PM

all the blood test,hard to get blood out of me as my arms are solid...they use the butterfly and it is still hard to get blood.i feel like im made of wax.they took that much blood out of me as well I was starting to get worried as well.didn't see any black outfits in the room so I felt ok .linda

#16 Karenlee

Karenlee

    Senior Silver Member

  • Topic Starter
  • Members
  • PipPipPipPipPip
  • 381 posts
  • Location:Long Island, New York USA

Posted 04 May 2008 - 02:22 AM

Linda lou,

Thats great that you got out with your mom and had fun. It's a good idea to drop the illness from the conversation and just not focus on it 24/7. I can't really do that with my mom, its all she wants to talk about when we're together and it starts to make me more nervous than I already am. I know shes worried and means well but I can only handle her in small infrequent doses if ya get my drift :(

Glad you didn't notice any black outfits in the room. I think I'll bring a garlic necklace with me next time Lol. The nurse that drew my blood had to write my name on all the vials she took and turned around and said to me "thank goodness you have a short last name" Hahaha! If I were still using my maiden name we would have been there all afternoon :D