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barefut

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Posts posted by barefut


  1. Hello Friends,

    Many years ago I posted the best, brief yet comprehensive layman's description of diffuse scleroderma that I have ever read. It was just a few paragraphs long, easy to read and understand and included every symptom we suffer with. It was great for sharing with friends and family and I remember it getting raves and people printing it to share.  I cannot find it now and I need to share with someone.  I could probably write my own but this one was special.  If anyone remembers or has the time to help me search for it I would give you a huge cyber hug!

    xoxo

    Barefut


  2. Oh wow gals, In reading your posts I realize I really need to find myself a new gastro doctor quick and get busy on myself. I had no idea internal hemorrhoids could cause that or there was a thing called rectal prolapse. There could be more things going on down there than I even knew about. And just yesterday I had an accident as soon as I stepped out of the car and had to step right back in and go home. As mad as I got, I tried to make myself feel better by thinking of all the 'could-haves', and 'at least's'...

     

    At least I was close to home. I could have been in the grocery store! I could have been going to an appointment. At least I didn't have anyone with me. I could have had the kids or a friend with me! Hard not to think of the 'what-if's' too though. What if it happens in a meeting?! At a baseball game?! On a date?! I gottta get fixed!!!!! I'd rather go to the gynecologist or the dentist - ugh ! Ya know, I'd trade in this problem for more muscle and joint pain anyday.


  3. Thanks ladies - Susie - so sorry! :emoticon-crying-kleenex: ( I've not seen that emoticon - I think it is my favorite one now !)

     

    I am scheduled for Feb 7th but I am going to have to reschedule for next month because I can't afford the gas, ferry and parking this month :emoticon-crying-kleenex: nearly $100! :emoticon-crying-kleenex: It's insane! :wacko: And aparently there is no one on THIS side of the water who accepts Medicaid :emoticon-crying-kleenex:

     

    Will keep yall posted...


  4. Hi Poojarakhia,

     

    Welcome! I'm so glad you found us. You came to the best place on earth! I was diagnosed 7 years ago and my onset sounds a lot like yours. Besides my muscle pain and fatigue, Raynaud's was the first clue that what I had was not lupus. My diagnosis is diffuse systemic scleroderma. I have mild/moderate lung involvement and my skin tightening has been limited to my hands and face and is also only mild/moderate. My biggest issues are with muscle pain, fatigue and gastrointestinal issues.

     

    My symptoms have remained stable for many years now. I started on Cellcept (mycophenolate mofetil) an immunosuppressant, right after my diagnosis. The main purpose of that medication was to protect my lungs. After 4 years on it I was able to go off it and I still have remained stable. It sounds like your doctors are being very proactive, that is good to hear! Is your rheumatologist a scleroderma specialist? Don't write off being able to get pregnant. There are medications that are safe to take during pregnancy - your doctor will know best.

     

    I hate to hear people worry but we all do, especially in the beginning. So I'm not going to say, "try not to worry" as I know that is easier said than done and I actually feel stupid telling people that. Just know that you are not alone and you have come to the right place for support and answers. Also know that there are no dumb questions here.

     

    Hang in there and keep posting!

    (((((Hugs!))))


  5. No surprise that the first topic I visit in the Fun and Friendship Forum is "Sick Humor" (Is it no surprise that Shelley started it? Just Kidding! LOL!)

     

    I may have shared this before in a blog but it fits so well here I must share again...

     

    Last year I started seeing a mental health counselor again. I left myself an appointment reminder on a sticky note by the computer that said, "Head Shrinker 9:30 am Tuesday". My oldest son read it and thought I was having plastic surgery.


  6. Has anyone had a nerve conduction study? I went to the doctor to find out why my left arm keeps tingling and going numb. I assume pinched nerve of course but where and why and let's get it fixed. I expected (and wanted) a referral for a deep tissue massage - ahhhhh just saying it out loud makes me breathe deeply. :wub:

     

    No such luck! :angry: I was referred for x-rays and a nerve conduction study! Yikes! :o They are going to shock me! :blink: (I love these emoticons! :wacko: )

     

    My x-ray showed "moderate" disc squashage (nice layman's term :) ) in C4, C5 and C6 but no way to know just from the x-ray if that is the cause.


  7. Hi Amber,

     

    I'm so glad you are heading to see a gastro doctor (like how I avoid spelling it there ;) ). The gastro issues have been one of my biggest complaints. And even though I don't embarrass easily, I too am hesitant to talk about this issue, if for no other reason than not to gross everyone out! :o

     

    Buttons and Judy - thank you for sharing about the SNS. I've never heard of it and may be heading in that direction soon. :unsure: First I need to find a gastro doctor I can trust who accepts Medicaid. I am relieved to know there is successful treatment! I thought I'd just have to suffer along with it.

     

    Off to do some research!


  8. "But the main part of what astounded me was that I didn't even have a canned answer for it, because nobody -- not even my doctors -- had asked me that before. Or maybe it was the thoughtfulness behind it, and that she appeared to be expecting a thoughtful answer, not a trite one. I wasn't the 100th patient with complaints that day to be glossed over and ushered out the door. I wasn't the relative who is always sick. I wasn't the disappointing friend who couldn't handle a big outing that day. If I had been able or willing to regale her with my woes that day, they would have been met with a fresh mind; with a real caring. Or at least, it seemed that way."

     

    Shelley ~

     

    :emoticons-yes: :emoticons-thankyou: :you-rock: :wub:


  9. Yes, Shelley - I think I am a little bit insane! :wacko: I will have lots of help though and I have a mom who said she'd take care of the dinner part, I'll just have to head up the auction which means soliciting dontions from the community and making sure each team contributes a gift basket, I think it will be less stressful than selling candy bars and making sure people get their mnoney turned in - there are still people who have not turned in their money from last year! *sigh* Thanks for the spoons! I'm going to need them.

     

    Now accepting spoon donations - no amount too small! :spoon: :spoon: :spoon: :spoon: :spoon:


  10. Hi Nick ~

     

    So nice to meet you! And congratulations to YOU for going to counseling. It's hard enough to make the decision to finally go and do it, then you have to actually get yourself out of the house. And I imagine it would be harder for a guy ;)

     

    Thanks for the reminder/advice to do something meaningful for myself, even if it is small. Being a single mom I find that hard sometimes but when I do it is oh so rewarding - even if it is just splurging on a mocha.

     

    I had something else in my head I wanted to say but now it is gone - sclero brain and constant interruptions from a 7 year old - I can't wait until school starts back up!

     

    I WILL ask about CBT! Thank you! Looking foward to getting to know you better and sharing coping strategies.

     

    Margaret ~

     

    I know I've said this before but I have to say it again - Gareth is SO blessed to have you for his momma and even though he probably cannot express that to you, I know he knows it becuase you make him feel it. You make me wish you were MY mom!


  11. Thanks for the update on you Barbs. I am so glad to hear you are doing so well and loving your radio job. I cannot believe it has been 5 years! I am looking forward to hearing more news about you, your family and your farm critters, not to mention the infamous hole in the wall (for those who have not read Barb's blog - the 'hole in the wall' is not a wild west gang but is nearly as famous.)

     

    Hope you find some time in your busy life to bless us with more blogging!

     

    Love you!

    :you-rock:


  12. Thank you so much for your advice and warnings regarding hypnosis Shelley. I would have never thought about some of that. I will ask my counselor for a referral to someone experienced.

     

    Another thing I do to help myself is make "Ta-Da" lists at the end of the day instead of "To Do" lists at the beginning of the day. It feels much better to see what I HAVE DONE - even if it is just taking a shower and feeding the boys - rather than look at an overwhelming list of all I have to do and will never get done. Mind tricks work for the feeble minded! Ha-ha!

     

    I also try my best to keep perspective and a sense of humor and let myself have a good cry when I need to. Letting go of what I cannot control is important. And the number one thing that helps me the most is being able to openly share my feelings with all my loving, caring friends here who make me feel hugged when I am feeling down.


  13. Hey Everyone ~

     

    I have coped with depression off and on for most of my life but as you can imagine it got much worse since having to deal with my scleroderma. It is one of my most challenging hurdles. I am seeing a mental health counselor and am on antidepressants and I've been using my "happy light".

     

    Other things I've done and or tried to help beat the blues:

    Music

    Forcing myself outside

    Petting my dog and cat

    Meditation

    Baking

     

    Does anyone else suffer from major depression? What do you do for yourself? I am wondering if hypnosis would work and how expensive that might be? What about self-hypnosis?


  14. Hi and welcome Kadi ~

     

    I have experienced the same thing you are - with my finger tips splitting and bleeding - it is very painful! Everyone has given great advice - I LOVED my hot wax bath! I would use Aquaphor as recommended by my doctor - slather it on and then use the wax bath. Very soothing! Also drink lots of water to help with your skin's hydration.

     

    Feel better soon!


  15. Hi Julie ~

     

    I am in your exact same boat! I switched Gastro doctors once becasue he was unbelievably rude and disrespectful to me. Were we seeing the same guy?! And then the guy I switched to seemed okay at first but I could tell he had no experience with scleroderma. Then when I went in for an endoscopy with a dilation he FORGOT to do the dilation! That was the MAIN reason for the endoscopy! Now I am looking for another guy and yes it is hard to find someone you trust and feel good about.

     

    I also had to switch all of my 'ologists' that I have had since my diagnoses (7 years ago) since Medicaid came under managed care in our state (all states?) *Sigh* It's a pain! And I don't think it's fair.

     

    Hang in there - I hope you find someone you can feel confident in. And I hope your dilation makes you feel better!


  16. Oh I love everyone's ideas! I have turned into a minimalist decorator during the holidays too. I use the cards I receive in the mail and hang them on a ribbon strung across my picture window. Sadly this year I only received 3 cards! Compared to the 50 or so just a few years ago - might have something to do with the fact that I didn't send any out - my gift to myself. Although I usually love writing a holiday letter, taking a photo of the boys and making a card, I let this tradition slip away 3 years ago when I was feeling stressed and overwhelmed. Makes me sad but it did get expensive too when I found myself sending out 70+ cards!

     

    I have a fake tree and hate putting it up and taking it down each year. It takes me an hour just to fluff the thing! I think I'll just put it in the shed all strung up with lights and decorated. How easy would that be to just pull it out next year and plug it in? Ha!

     

    I hope everyone had a peaceful relaxing holiday and wish everyone a happy pain-free and prosperous new year!

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