Feb 15, 2021
Snow, sleet, rain, ice
Feb 13, 2021
Not all questions have answers, but we have a giveaway!
THANK YOU AGAIN FOR THE UPLIFTING AND MEANINGFUL COMMENTS!!
Saturday. No doctor visits, no tests today, trying to relax. I have to say it is not easy. There are times when ridding your mind of doubts should come easily, but do not. Weeks of despair don't disappear overnight, unanswered questions and lack of confidence in information remain. Normal I suppose. But I won't feel safe in this retraction until I have blood proof that Covid is the cause. Are they sure that it is not the beginning of IPF? Am I being foolish? Cautious? Skeptical? Why didn't a doctor (not the office staff) speak with me about what to expect? Is this lung involvement at the end of the virus? Start? Does it matter? Are the ground glass particles what fill with fluid quickly and become threatening as we so often hear? Should I be looking for symptoms? Should I be quarantined if I am to be tested again? No one said Mark should be. As one crisis seemed to resolve, should I be nonchalant about the lesser? I thought the shaky and breathless mornings were from anxiety, but continued today. I feel someone should be offering answers and at the very least, informing me of changes or symptoms to be wary of. So as the fog is lifting, the questions keep coming.
Feb 12, 2021
Holy shit
Feb 11, 2021
It is what it is
Introduction
IPF is a rare, incurable disease of the respiratory system during which fibrotic tissue and scars appear in the lungs. It leads to death within 2–5 years after the diagnosis.
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I have much to do. Finish projects in order to sell the house, empty it, find another for Mark, accept leaving this good earth gasping for air, and deal with guilt of leaving Mark alone. But I cannot. I am stiff, but want to run. I am shaking, but want to rest. My voice is a mere whisper, but I want to scream. I want answers, but there is no one to ask. I don't think I will ever accept this. The days of watching my father suffocate for two weeks with anxiety levels as high as the sky, and my sister calling 24/7 for months as she gasped for air, have never left, and now it will be my turn.
I have been offered nothing to calm me, lost fifteen pounds in two weeks, have not slept. No medication for fibrosis that allows more breath, will have to carry oxygen. and the final function tests are not scheduled for five weeks. That's how long it took to go from no problem to breathless, so I am calling Cleveland and Pittsburgh recommendations, hoping to be seen sooner. My rheumatologist for Sjogrens (which may be the cause), primary care, and cardiologist act like time doesn't matter, and it may not if there is no real treatment. If any trials or experimental drugs offer hope, it will of course take our retirement fund for drugs because Medicare plans cover nothing. Irrelevant.
So my dear sweet stitching pals and blogging buddies, I don't have the focus or mindset to continue. Lots of linen and charts and samplers to offer, maybe when I find peace, I can come back for that.
Thank you for your friendship over the last ten years. I can't begin to explain how enjoyable, enlightening, inspiring, and better my life has been with you in it.
Love you.
God bless.
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Feb 7, 2021
1807 Elizabeth Clayton
by HandWork Samplers
with modifications
I appreciate and thank you all for your caring and kind comments.
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Feb 3, 2021
A break
Hi folks. I am not one to handle bad news well. Never have been.
When I visited the ER in November, I had a chest x-ray, all was good. Less than two months later, and coinciding with the Sjogren worsening, I have bad news with both the top and bottom areas of my lungs which is why I am losing my breath. If this could develop to this degree so fast, where am I headed?
Taking a break. A photo of stitching progress many show up, but I really don't want to relay my fears or anger, and this will consume my thoughts for a while. Additional tests are coming, but damage has already started and affected me in this short time.
Thanks for your concern and friendship, I'll update when I can be an adult and face this as so many of you have done with your own crises.
Love you all.
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