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Everything posted by barefut

  1. Awe Kamlesh - So sorry you are having to deal with this. I hope you find relief soon!
  2. Best of luck with your situation Amberjolie!
  3. Amanda - thanks for the PAH info! It is a scary thing and I don't know enough about it yet to ease my mind about Pam. I can only imagine how she feels but know she is educating herself and staying on top of her doctors and her care. She is an inspiration to us all regarding being our own advocates and an inspiration to me in so many other ways as well.
  4. Well yes, finally! You were kept waiting too long. I am so relieved that none of it is anything urgent. The beginning of PAH does worry me a bit though. How do you feel about it? What did the doctor say about it? Love and hugs Missy!
  5. Thank you ladies :) My head is swelling (OH NO!)
  6. Oh Cayla, I am so sorry for your loss. Condolences and best wishes to you and your family.
  7. I am grateful for my good days. You know the ones - when body parts seem to be cooperating or at least not giving you too much grief. You are cheerful, productive, grateful and optimistic! You think, okay what am I doing right today? What did I eat yesterday? Can I repeat everything so I can have these good days all the time? Then BAM! You wake up the next morning and wonder how many cars were on the train that ran over you last night. If you can get out of bed, you can barely move and everything hurts. And if the pain and fatigue itself is not bad enough, you are crabby, helpless, bitter and mad. You don't even want to be around yourself so you know you'd better stay away from friends and family. Ironically, this is the exact time when you need friends and family the most. And so the story goes day in and day out. You never know when you go to 'sleep' at night (and I use the term 'sleep' lightly - pun intended) how you are going to wake up in the morning. Will you be at the top of the roller coaster full of energy and optimism? Or at the bottom of the roller coaster looking up at the hill you must climb? Psychologically this makes a perfect recipe for bipolar disorder. If your physical pain does not drive you crazy the emotional highs and lows surely will. Subsequently, I find that on my good days I am probably overly cheerful, grateful and optimistic (nobody wants to be around that either) so I tend to think I can conquer the world. Play catch up for all of my down days and solve the world's economic crisis at the same time. Then, you guessed it - crash and burn. Finding balance is especially hard when dealing with chronic illness. Our highs are higher and our lows are lower than your average healthy person. Pacing ourselves is crucial to finding balance. As well as paying very close attention to our bodies and our moods. It is recommended and I know a lot of us do keep a health journal. Writing down what we eat, how we feel and what our day consisted of can be a helpful tool in learning how to pace yourself as well as find balance. This doesn't have to be time consuming. It can be as simple as using a calender to assign each day a mood and/or pain marker on a scale of 1 - 10. Keeping a separate food diary where you record what you eat and time of day can also bring insight into what makes us feel better or worse. Paying close attention to our bodies is especially important. With chronic illness, we tend to ignore so much. It's innate; I think it's a survival mechanism. We don't want to be constantly focusing on every single body part that squeaks but I think we do need to set aside some time in our days to sit still, be quiet, close our eyes and take inventory of what is going on in our bodies. Write it down and then move on. When I have done this and then gone back and read past entries I have been surprised by a lot of what I wrote because I had forgotten about this or that - these being recurring things that are worth mentioning to my doctor. We also have to give ourselves a break. Not only physical breaks but mental/emotional breaks. First of all NOBODY is perfect even healthy people, so if your house isn't as clean as you'd like it (my hurdle) or you have to give up some things and/or give in to others, tell yourself it's OKAY. Just don't fall into the trap of doing it all the time and becoming truly lazy. We can give ourselves breaks but we also have to know when to get up and PUSH! Think of PUSH as Persevering Under Sorry Health and ask yourself, "Can I PUSH today? Or do I need to lay low?" One last thing - chronic illness and depression go hand in hand. Be aware of the signs of depression. These include: prolonged sadness, apathy, social isolation, lack of motivation, and a feeling of hopelessness. Please don't be afraid to ask your doctor for help. You deserve to feel better.
  8. Hi Bleev ~ I was diagnosed with ILD in 2006 at the same time as my diffuse systemic scleroderma diagnosis. My pulmonary doctor prescribed Cellcept (Mycophenolate), an immunosuppressant. My lung function has gone up and down over the years but has remained generally stable with my oxygen diffusion hanging around 60%. I have never had to be on oxygen and my pulmonary doctor told me he has even seen slight improvement in his patients taking Cellcept. Best wishes to you with your treatment.
  9. You have been in my thoughts everyday. I wish I could make it all go away. For you do not deserve all of that stuff Enough is enough is enough is enough! I am wishing you good news and peace of mind That you can leave all of this testing behind And look to a future healthy and bright Where you can shine your virulent light
  10. The cursor sits blinking in sync with my heartbeat waiting for me to grace the blank white space with words of wisdom, hope, empathy, humor or a share of despair. But who am I to think I can write? Who am I to think I can change a life? The cursor mocks me. Dares me. Laughs at me. Yes, who are YOU? I am just a girl. Just a mom. Just a person. Just swimming. Breathing, seeing, listening, breathing. Experiencing, learning, evolving. Stepping carefully and sometimes not so carefully - sometimes on people's toes - but always learning. Paying attention, making mistakes, paying my dues, and making progress. Slow by some people's standards but still progress nonetheless. Careful not to judge others and yet judging myself by standards set on high. Who am I to think I can write - change a life with my words, or just make someone think, or laugh, or feel better for just a moment? The cursor IS my heartbeat. The words are from my heart.
  11. Robin, I remember your mom and the warm support she gave. I am so sorry for your loss. Peace be with you and your family
  12. It is with great pleasure that I am able to tell you that our Sweet Pam is just as Sweet IN PERSON as she is here in the forums! On Saturday August 20 Pam, her hubby Brian and their little fluff ball Pomeranian arrived in Port Townsend, via their way cool speed boat, to meet me. Little old ME! Yes, there were tears. I met Pam online when I joined ISN back in 2006. For awhile I was a support specialist alongside her. I have always wanted to meet her and thought it would be possible ‘someday’ as she lives just a hop skip and a jump over the Cascade Mountains from me. I am so grateful that she and her wonderful husband, Brian made the effort to make it happen. We had so much fun! After the boys and I picked them up at the marina we went out to visit my sister and brother-in-law at their mini farm. After a short tour we sat on the covered porch of the barn, enjoyed the cool breeze and talked while my youngest son Henry brushed Bob the sheep. We came home for an easy dinner of pizza. It was so great to have her here in my home. I wished she didn’t have to leave. Just before dusk we drove them back to the marina. I think my boys asked Brian for a boat ride and before I knew it we were speeding along Port Townsend’s bay at dusk, looking at the lights of town and enjoying the delighted looks on my boys’ faces. Braden got to drive the boat, Henry was too afraid he’d wreck it, but was happy to sit next to Pam and I and enjoy the wind in his face and the speed of the boat. I enjoyed seeing my town from the waterside, a view I have only seen from the ferry so it was nice to get a closer look. We boated out to the lighthouse. On the way back, as we approached the marina, I started to feel a lump in my throat as I knew I was going to have to say good-bye in a few minutes. It was almost dark once we docked. There were hugs all around, more tears as I choked back that lump in my throat and then we were on our way back home. I felt like I had known Pam all my life. She and Brian felt like family. They ARE now my family! The boys and I are planning the trek over the mountains next summer to visit them. And if my evil plan works they will be moving to Port Townsend soon!
  13. barefut

    Head Shrinker

    "Daily, hourly weeping feels good because at least you are feeling something. However, it does sometimes get in the way when you are pumping gas and you start bawling for no apparent reason." I suppose crying at the gas pumps these days is probably not all that uncommon.
  14. Sweet! Thanks Sweet! Do you know if that applies to SSI or just SSDI or both?
  15. So my oldest son, Braden (13) had never heard the term "head shrinker" before and when he saw the note I wrote myself reminding me of my first appointment with a mental health counselor, he thought I was having plastic surgery. I have not seen a counselor since my diagnosis 5 1/2 years ago, though I have struggled with depression off and on all my life. Lately, and by lately I mean since I quit working a year and a half ago, I have been struggling with it again. For those who suffer with depression or are close to someone who does, I don't have to tell you what an insidious monster it is (hey, kind of like scleroderma!) Social isolation, lack of motivation, prolonged sadness, apathy and hopelessness take over and on a good day, you feel like an extension of the couch you lie on. When you DO care about anything, the feeling is guilt for not being, doing, accomplishing what you think you should. And then more sadness for being AWOL on your kids, and other loved ones and feeling like you are losing/wasting precious time, precious life. All the things you once loved doing are now chores and all the chores you once hated doing are absolute impossibilities. Daily, hourly weeping feels good because at least you are feeling something. However, it does sometimes get in the way when you are pumping gas and you start bawling for no apparent reason. The last thing you want is complete strangers asking what is wrong and if you are okay. So, I am seeing a head shrinker now and if she really could shrink my head that would be great because between my weight gain and the prednisone, I am pretty much hating my chipmunk face. She, we'll call her Deloris, gives me homework assignments. The first week's assignments were geared towards getting back to doing the things I love and reducing stress. So #1. Write. Just keep writing. Even if it's just a line or two just write. #2. Let my boys work out some of their squabbles (nice word for it) with each other, on their own. #3. I don't remember #3 but hey! 2 out of 3 ain't bad! At today's appointment I cried about feeling guilty and like a loser when my sister comes over to do her laundry and then always cleans my house when she's here. So, we are working on getting rid of the guilt. My assignment: Repeat, "I have an illness, I AM NOT THE illness." whenever I start to feel like a worthless loser. However, I cannot let myself use scleroderma all the time for my lameness. Finding balance is hard.
  16. Well that calls for a happy dance! :emoticons-line-dance: (I just love that) Congrats! And you GO girl!!!
  17. Hi Queenie, So happy for you! Better days ahead for you girl! :emoticons-line-dance:
  18. Another great one - are you reading my mind Janey? Thank you!
  19. Since reading this article I have become cyber friends with the author, Diana Weber. We have A LOT in common! Just want to say thank you again Janey!
  20. Money in the bank. Bills paid. What a relief! :emoticons-line-dance: So tired today - must go nap. Wanted to spread the good news first. Everyone take good care!
  21. Hey Lady - Better late than never in a reply? Thank you for your precious support!
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