barefut

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About barefut

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  1. 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
  2. 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
  3. National Angst Day?! In honor of ME?! I LOVE it! Perfect Shelley! :thank-you-2:
  4. 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
  5. From the album Barefut

  6. 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
  7. 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
  8. 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
  9. 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.
  10. 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...
  11. 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!))))
  12. 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 managed to talk myself out of that one too. The fear of embarrassment and causing a scene was greater than the fear of what was happening to my body - even though all I wanted to do was rip off all my clothes and jump out the window. :o The next one came in the middle of a meeting where as secretary, I was taking notes. I had to excuse myself and go home. The worst one was about 2 years ago here at home in the middle of the night. I thought I was having a heart attack and it may have been triggered by an esophageal spasm. I had to call 911 before I passed out. My youngest son is still traumatized by the EMT's taking me away. Today, I just couldn't stop my mind from racing. I started fretting over - well, everything! The foremost in my mind - getting my son and his friend to their driver's ed class on time (I'd better be careful here or I may relapse). My mind flooded with what-ifs. What if the bridge opens for marine traffic and makes us late? If we're late they will charge us $15. What if there's an accident? What if WE are in an accident? I should not let my son drive... From there it just went on and on until my stomach was in knots and my chest was so tight I couldn't breathe. I envisioned the medics coming again and I sure did not want that so I called my doctor's office and my nurse helped me to breathe regularly again. She consulted my doctor and he advised me to have someone drive me to the walk-in clinic and get checked out. I told them I could have my son drive me there when he got home in an hour but after I felt a little better I decided not to go. I really, really do not want to worry him, or my youngest, plus I have to be here to babysit a 7 year old when the elementary bus arrives. I seriously considered asking my dad or my sister to drive my son and his friend to driver's ed but I don't want to put them out. So again, my fear of worrying others or having to put someone out of their way for me, overcomes my anxieties. I know that is wrong. But I cannot help it. My nurse said turn on the tv for a distraction. Too annoying! Writing to yall here is a good distraction for me. I made an appointment to see my doctor first thing in the morning to discuss what to do with me. Here comes the high school bus - time to suck it up - again. *Sigh* I'll be alright - nobody worry about me! I mean it! Later.... You - will - not - be - lieve - it! :blink: The bridge DID open for marine traffic! We were about 20 cars too late to make it across. I - do -not - be - lieve - it! I have not gotten stuck on the bridge in well over a year! Marine traffic is not a regular thing - maybe a couple times a week? And on the very first day of driver's ed class, the very thing I was fretting about, happened and made us late. Thankfully not too late and as it turns out more than 1/2 the class (9 out of 14 students) all come from our side of the bridge. It's normally only a 1/2 hour drive but if you get stuck for a bridge opening (thus a closing) then you can add at least another 1/2 hour to your travel. The instructor didn't charge anybody for being late. I don't think that's fair anyway. Well once there, the kids hurried in and I had brought my crossword puzzle book to occupy myself for the next 2 hours but there was a nice break in the rain and the night air felt good so I went for a walk. I had not walked through this olde part of this cute Scandanavian town in more than 15 years. It looks a bit like Santa's North Pole only without the snow. The shops are precious and the bistros and restaurants were warm and inviting as was the famous bakery which had all their wares in the window - taunting me. It was a nice, peaceful walk, a good distraction. I got back to Betsy just as it started to rain again. I just sat and enjoyed the sound of the rain on the roof of the suburban. Before I knew it, the kids were coming out and we headed home. They have their first drive tomorrow! I can't believe my baby is driving. Well it's off to bed now. I have an early doctor appt. Going to be pretty embarrassing. I hope he can fix me. 4:18 am - I'M UP! In browsing some info on anxiety attacks, I found this from helpguide.org: "A panic attack may be a one-time occurrence, but many people experience repeat episodes. Recurrent panic attacks are often triggered by a specific situation, such as crossing a bridge or speaking in public – especially if that situation has caused a panic attack before. Usually, the panic-inducing situation is one in which you feel endangered and unable to escape." Ha-Ha-Ha!!!
  13. 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.
  14. :emoticons-yes: :blush: :wub: :D
  15. 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.