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barefut

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About barefut

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  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 I was probably just stressed, overweight and out of shape. After years of carefully taking note of my symptoms, and seeing people more overweight than I was able to move more freely and without pain, I went to my family physician for an explanation of my pain and fatigue. Again I was told I was stressed, overweight, and out of shape. I kept going back with every new symptom and finally got blood tests that resulted in a positive ANA indicative of an autoimmune disease. I was told I had "probable lupus". After my fingers started going cold, I went back and was told I had "Buerger's disease" most commonly found among "Middle Eastern men who are chain smokers". My doctor was tired of dealing with me and was making stuff up at that point. Apparently he never heard of Raynauds being related to autoimmune disease and the possibility of scleroderma - he probably had never heard of scleroderma, yet he was content to look up "Buerger's disease" right in front of me and diagnose me with that. The next time I went back to him, I mentioned lupus and he said, "Who told you you have lupus?" and he called me a hypochondriac. That's when I asked a different doctor if he could see me. He was the doctor who delivered my second son. But I was told he was not taking new patients. I told the receptionist that I was desperate and that I was technically not a new patient since he delivered my son and they agreed to take me. After telling him my symptoms and how long I had been experiencing them, he referred me to Dr. Buckner at Virginia Mason. He knew then what Dr Buckner confirmed with a simple examination of my nailfolds and the scl70 antibody blood test. I had diffuse systemic scleroderma. After years of pain, fatigue and humiliation, I was finally diagnosed. It was both a relief and a nightmare. The date was January 2, 2006. My marriage had been on the rocks for years and in March the same year, my husband left. Actually a blessing. That same month both my boys got chicken pox. At the same time I was having trouble breathing. I couldn't even read them a bedtime story due to shortness of breath and chest pain. I called Virginia Mason and the ER doctor on call, who happened to also be the pulmonary specialist there at the time, insisted I come in because I could have a lung infection contracted from the boys' chicken pox. I had never experienced so much anxiety in my life. I left the boys with a sitter and headed to Virginia Mason ER. It was the longest 2 and a half hour trip I had ever taken. My sister met me there. I was a complete wreck. From what I had read about scleroderma, I knew there was no way of knowing if I had 3, 5 or 10 years to live. And with this possible lung infection, I was scared to death. I sat in the waiting room with my sister, sobbing. All I could think about was who would take care of my boys? My ex was abusive and no role model. Not only that, he was in no position to take care of them financially. My emotional state exacerbated my physical symptoms. And the ER was a nightmare. All alone, waiting on a gurney in the hall, among screaming, moaning drug addicts before I could get test results was like being in a very bad place. Finally I was told that there was no infection and to follow up with Dr. Buckner. I went home feeling only mildly relieved. Dr Buckner started me on immunosuppressant medication as well as prednisone and a medication to treat the Raynauds. She was not able to give me any prognosis. It was simply just a wait and see...If I was still here after 5 years then chances were good that I would be here another 25 years. So in those first 5 years, I took a medical leave of absence from work, applied for disability, eventually got SSI in lieu of disability, and then quit my job. I focused on my kids, my health and my home. It took me 3 years to finalize my divorce. When I was about to lose my home due to foreclosure, my dad stepped in and paid it off. It's been 13 years since those first few very scary months/years and in all that time I have learned to appreciate every little thing. I know what is important and what is not. I have had to give up a lot of myself - of who I was. There are a lot of things I can no longer do and I grieve those losses every day. But I also know how lucky I am. I know what really matters and I know that even living with scleroderma, I am living the best life I can and I appreciate every little thing just a little bit more. Especially the blessing of being a mom.
  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 taking a supplement. Major depression never really goes away. It just abates for periods of time and requires medication, professional therapy and lots and lots of perseverance and effort. Basically, there is no 'cure' only treatment. There are varying degrees of depression that can change daily, even hourly. People who suffer with depression can feel when they are about to fall into the abyss. Meaning, that black hole where one becomes virtually catatonic and even moving is a monumental effort. All that being said, there are things we can do to help fend off a depressive episode. 1. Get up. Move around and get your blood pumping 2. Change of scenery. Go outside and get some fresh air 3. Sunshine. If the sun is out, go sit in it for awhile 4. Eat something. Comfort food. Just don't make it a habit 5. Aromatherapy. Spray on your favorite perfume, light scented candles 6. Ambiance. Open your blinds and let the light in. At night, use string lights and light candles 7. Distraction. Watch your favorite comedy/sitcom/sports on tv, do a crossword puzzle 8. Write. Keep a journal of your feelings. Write down how you feel in the moment 9. Cry. Just have a good one. Let it all out. 10. Cook. Or bake something that makes the house smell good 11. Take a shower or a long bath 12. Snuggle your pet 13. Color or draw 14. Chocolate. Need I say more? 15. Force yourself to clean/pick up the house. Something that takes little effort but makes a big impact 16. Go for a drive 17. Pull weeds. Very satisfying 18. Talk to a friend/online support group. 19. Music 20. Shop. If you have money. Just don't make it a habit I hope these strategies help someone. They are also good for beating the basic blues or temporary sadness.
  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 surrendered and just sat in my recliner all day, staring at the walls, napping, and staring at the walls some more. It's called depression. I take medication for it but it's still always there, lurking in the shadows, waiting for a chance to jump out and take over mind and body, leaving me in a near catatonic state. I become one with the chair upon which I sit. A piece of furniture. At least for today. Because like depression, optimism and hope are always there too. Lurking in the shadows, waiting for their chance to jump out and strangle depression. At least for a day. Probably the hardest thing I've had to do in fighting scleroderma, is fight the depression that goes with it. To tell yourself, in your darkest hour, that tomorrow is another day and you won't feel like this forever, takes faith. And my faith comes in knowing that I've been here before and I've survived. Time and time again, I've survived days of despair. And I remember what optimism and hope feel like. Even though they seem so far away right now. Tomorrow is another day. But for today, I let scleroderma, and depression, win. Because sometimes we need a break from fighting. And it's okay to surrender - to rest your body, mind and spirit - until optimism and hope come out of the shadows to help you fight - and win again.
  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 work done and how did it go? I remember one of my doctors telling me I will need to go on antibiotics but don't remember why - maybe it is because I take max dose of Cellcept?
  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 because if they do, they will start hollering for their alfalfa and they won't shut up until they get it. . They should know by now my coffee comes first! And that they never get to eat before 7am. As I lay there, going over what day it is and what is going on with my boys - does Braden work? Does Henry work after school? Will I have to make dinner? Do I have an appointment today? Did I miss another appointment? ! I have to report household income changes to DSHS. Is my prescription ready YET? Who do I have to yell at about that? What fresh kill will the cat have brought in for her kittens today? I don't wanna get up. I don't have to get up. But I do anyway....
  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 good for me was to come back here and reconnect with you all. I think about my Scleropeeps often and how lucky we are to have this forum. I look forward to reading the forums and catching up. Many Spoons to All, Barefut
  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 denial, mowing the lawn, weeding the garden, babysitting 5 kids in addition to my own, and generally knocking myself out with housework, laundry, grocery shopping, cooking, and being chauffeur to play dates, sports practices and games, I realized that if I was going to try to keep up at that pace, then I was going to have to ask for help. Since I was (and still am) not good at asking for help, I had to let some things go, beginning with my yard. It saddens me since I have always loved gardening and enjoy the feeling of a hard day's work and seeing the before and after. I take pride in my home's landscape. Now I had to watch the weeds grow, let my dream projects go and try to not let it bother me. I have not given up on my gardening. I just do what I can, when I can, and try not to stress about what's always left to do. A garden is never reallly "done" anyway. But here is where that grief comes in. I will always long for the days when my body allowed me to do pretty much whatever I wanted. And I still grieve for the loss of what once was. I still have a tendency towards denial, or "functional denial" as I like to call it. Sort of a healthy denial if you will, in which I do acknowledge scleroderma; I've taken my doctor's advice on treatment; I have made adjustments in my life to accommodate my limited abilities and I continue to go about my business of living life to its fullest without even thinking about scleroderma for the most part. So, I suppose you could call it acceptance. Making adjustments was and is hard. Really hard! When you've always been one to do it yourself as well as for others, it's just not in your vocabulary to ask for help. I still have a hard time asking for help and won't unless it's absolutely necessary. Making adjustments has been a real learning experience. I have had to learn to look at a scrappy yardscape and not care (too much). I have had to learn to be able to relax in a messy house. I have had to learn to not feel guilty for feeding my kids instant oatmeal for dinner two nights in a row and for having to dig dirty socks out of the hamper for them to wear because I just couldn't get around to doing the laundry. (Incidentally I solved this problem by buying more socks. Lots and lots of socks!) Replacing the word "lazy" with the word "pacing" was helpful. If I was a healthy person, you could call me lazy. Since I have scleroderma, I am pacing myself. Most days I can get up and clean the house for 20 minutes then I need to take a break for 20 minutes. And that's okay. Things take longer to get done and I don't get near as much done as I would like to, or as I used to, but it's just one of those adjustments I've had to make and I accept it gladly in exchange for being able to do it at all. I also learned that accepting help was almost as hard as asking for help. It does take a bit of pride swallowing and with my esophageal problems.....well you know. After learning more and more about scleroderma and its tag along friends like Raynaud's, interstitial lung disease, the GI business and more, I decided I was going to take a proactive approach to my treatment and care. I noticed some loss of range of motion in my hands. I dread losing any function in my hands. So I went to hand therapy as a preventive measure. I learned a lot of great stretching exercises and bought myself a parafin wax bath as well as a small hand massager that helps to keep my joints flexible. I use it on my tight face too and it helps a lot. Since getting any kind of outdoor exercise in the cold months is aggravating to my Raynaud's, I bought myself a treadmill with the gift money from my dear ol' dad. Now just finding the discipline to get on it regularly is another story. But hey, it was a proactive move! I also finally started making multi-vitamins, probiotics and glucosamine a regular part of my "pharmaceutical food group" as a fellow sclerodermian in my town refers to her handfulls of daily pills. Massage is also something I would like to make a regular part of my care but it ain't cheap! Our town has a school of massage and offers student massages 3-4 times/year at a great rate, so I try to hit those. It feels good taking charge of my body and my care and treatment. I feel empowered and determined to not let scleroderma rule me but for me to rule scleroderma. I have two very active young boys who need me and too much life left to live to let sclero get the best of me. Next: Gratitude, Acceptance and Peace
  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. 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
  13. barefut

    Scleropoetry

    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
  14. 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
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