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barefut

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Everything posted by barefut

  1. Not long after my first son was born I started having a lot of unexplained muscle pain and fatigue. The year was 1997. Soon, my hair started falling out - by the hand fulls. Not in clumps but overall thinning, at an alarming rate. I went to a dermatologist and he said that since I was nursing it was probably a lack of vitamin K. So I took vitamin K. I was having lower back pain and since I had been diagnosed with a bulging disc from a work related injury when I was 5 months pregnant, I went to a back pain specialist. He said since I was a new mom and carrying around a 1 year old, that
  2. It seems like chronic illness and depression go hand in hand. As if we don't have enough on our plates, chronic pain exacerbates depression and depression exacerbates chronic pain. It's a vicious circle that's hard to get out of. I was diagnosed with major depression when I was 19 and have been on and off (mostly on) antidepressants most of my life - especially after my systemic sclerosis diagnosis in 2006. Major depression isn't something we can wish away with 'mind over matter'. It's not going to go away by 'changing our thinking', exercising, eating healthy or ta
  3. Thank you Margaret, and so good to connect with you again! I hope Gareth is doing well. I recently started a new anti depressant which is supposed to help with my fibromyalgia too and I believe it is helping for both. I started on low dose so am going to kick it up a notch now. I am feeling better this morning. Taking life one day at a time :) Love and Hugs! Barefut
  4. I'm tired. So tired. Tired of nausea, of living in the bathroom, of pain, of this dreary weather. Tired of being tired. Tired of scleroderma. Today I gave up. I let scleroderma win. And it felt good. Sometimes I just don't have any fight in me. Some warrior I am. I don't even have the energy to be angry. And you know what? I don't care. At least for today, I don't care. Sometimes we need a break and we never get one from Scleroderma but at least we can give ourselves a break from fighting. It's exhausting. Physically, mentally and emotionally exhausting. So today I
  5. Hi Scleropeeps, I have not been to a dentist since I lost dental coverage when I could no longer work. That was 12 years ago. I know... So NOW I have a cracked tooth on my right AND a filling came out on my left. I have never liked the dentist but am even more fearful now, with my small mouth and tight jaw. I made my appointment and "warned" the receptionist to warn the dentist about me. A new dentist to me, and I live in a small town, so I doubt he has ever seen anyone with scleroderma. I am just wanting to know if anyone else has had to have any major dental wor
  6. I awaken and for the 3-4th time, it takes me at least 30 seconds to get my head straight and realize I am not in my room at the home I grew up in. As the fog lifts from my sluggish brain, my dream comes shooting back to me in bits and pieces - different dream but same place and same theme as always. Maybe I should mention that to my therapist? Gauging from the light and the weather outside, I guess it's probably 5:23 am. I look at my phone, it's 5:25. I'm never more than 10 minutes off. I peek through my curtains at my goats in their pen, being careful that they don't see me beca
  7. Hello Scleropeeps, I've been away from the site for awhile, trying to pretend I have a normal (healthy) life I guess. It worked for a little while. I was feeling pretty good physically, was staying busy, felt like I had a purpose and was able to push through the bad days. These days, not so much. I've been battling my depression again. It has slapped me down hard this time - harder than I have ever felt it before. Every day is a struggle to get out of bed. BUT I DID manage to get myself to our local mental health clinic and am seeing a professional. One thing I thought might be
  8. barefut

    Stages

    There are stages we go through after diagnosis that go something like this: 1. Diagnosis 2. Shock 3. Denial 4. Adjustments 5. Proactivity 6. Gratitude 7. Acceptance 8. Peace At least these are what I have experienced, along with an underlying grief that tends to resurface now and then. In my first blog entry I talked about my diagnosis and my shock. When I was done freaking out, I moved in and out of denial for awhile. I figured as long as my symptoms weren't bothering me too much then I could just pretend that scleroderma didn't exist in me. And while I was busy in deni
  9. 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
  10. National Angst Day?! In honor of ME?! I LOVE it! Perfect Shelley! :thank-you-2:
  11. Wow! Been awhile.... What's new with me? A teenage driver (and all the angst associated with it) A new (used) car (and all the angst associated with that). Dating (and you guessed it - more angst) All angst aside, I have missed this place! I hope everyone is doing as well as can be expected. I am status quo for me :) Need to do some reading and catching up and then will get back to you all with my usual wit and humor ;) Spoons to all! XOXO Barefut
  12. barefut

    P1010563

    From the album: Barefut

  13. Hard dry skin that cracks and bleeds Sausage fingers do impede Whose hands are these That so betray me Stiff and clumsy Oh how they fray me And in the cold turn white then blue Not to mention painful too Whose hands are these I don't recognize Fingers swollen twice their size I lay them in my lap to rest Before I put them to another test
  14. Telangiectasia are red My fingers are blue This disease feels like Always having the flu Sometimes I do well Other times I do not It's not just my body My attitude is shot So when I am angry And I don't give a care I come to this place For my feelings to share I know I am safe here With my scleropeeps For they understand This awful disease
  15. I think we gastro issue sufferers could use a little humor today. Here's a past blog entry on a day in the life of me. :happy-dance: A Slice Of Sclerolife
  16. 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
  17. 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...
  18. 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 (myco
  19. Contrary to what I know you all think of me, I don't have it all together. Nope, I'm not the calm, cool, collected supermom with all the answers that I appear to be. ;) But make no mistake! I USED to be! (if only in my mind). :rolleyes: That could be why I suffer from the occasional anxiety attack today. Just talked myself out of a full blown, chest crushing, hyperventalating, finger tingling, arm numbing, dizzying panic attack - well with a little help from my doctor's nurse, bless her heart! The first time I had a full blown anxiety attack was on a hot, stuffy, crowded plane. I m
  20. 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.
  21. 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 ju
  22. 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
  23. barefut

    Humor

    "Humor is the sword with which I battle this disease" ~ Barbara Lowe Whether you are battling a chronic illness or just life itself, humor is the sharpest, most effective weapon we have at our disposal. It's free, easy to use, you don't need a permit or any special training and you can't accidentally kill anyone with it (at least I don't think so). And the best part? You can open carry. So where can we find this thing called humor? Well besides all of the obvious places like Comedy Central, your spam folder and the sheriff's log, it's everywhere. You just have to look. There is a
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