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Low T-Cell - Bone Marrow Biopsy
Blood Cancers & Disorders | Last Active: Nov 15, 2022 | Replies (162)Comment receiving replies
I guess it is time for a long reply. .can't help it as there is so much going on. Getting off the subject: The temperature will continue to do as it will. Of course we the people must be the caretakers of this planet. We do not do well with our polluting of the air, the oceans, inlets, cannels, etc. AND what we do with the habitats of the animals and the animals themselves who share this planet with us to me is a disgrace. Shame on all of us. So many of us worry and work hard to bring together the research to help to the many ill and dying humans and animals and then there are the others who destroy the advances we work so hard on.
Anyway getting back on to my little but many health issues: The fingernails on my right hand have been brittle, completely destroyed and revealing the nail bed. Painfull. BUT GOOD NEWS: I started taking hydroxychloroquine about five weeks ago. GUESS WHAT? After seven years of this nail horror the nails are healing. Much of the pain is gone and you can see the smile n my face around the world. Still strugeling with the pain of three autoimmune diseases and other medical problems. My time is almost up with the Pancytopenia. The osteitis pain is horribly painful so why do I continue on? Again, the will to live is very strong. To enjoy a delicioulsy good meal, an interesting and exciting movie, a good and interesting conversation with another human being, to watch a bird, a sunflower grow so fast, to see the most glorious morning glories, to watch the clouds roll by as I lie outside t get some twenty minutes of sun (vitaman D). And all this done with the great pains that come with the Psoriatic arthritis, rheumatoid arthritis, diabetes, hypothyroidism, copd, sleep apnea, ground glass on the lungs, chronic venus insufficiency, A-Fib, kyphosis, osteitis, chronic kidney disease, (also quite painful) Cannot do much about this as there is a MONOPOLY in my county. A monopoly of nephrologists and they do take advantage of this. Cannot be bothered to look up the rest of my afflections. So if my time does not come soon enough then? Sorry, I am feeling very sorry for myself. Some times it helps. To go to a self help group would be a good help but not being able to drive with my now "Low Vision" (Yes another health problem) The most frightening one of all blindness a horror to me.. I am trying to stay strong but it gets harder and harder. Dear God I am waiting for you whenever you are ready for me. Please excuse me.
Replies to "I guess it is time for a long reply. .can't help it as there is so..."
@peach414144
As a mentor with this outstanding forum centered around caring, empathy and hope, I’m moved and humbled daily by the stories and journeys fellow members share. I do my best to respond with compassion, honesty and factual answers. I freely admit, there are times when I’m reduced to tears and overcome with emotion. This response from you is one of those times. I simply want to reach through this computer and hug you.
I don’t know how I missed your previous post in this conversation and for that I’m genuinely sorry. Reading through several of your responses in other groups, as well as this one today, I can feel your despair with the overwhelming number of medical issues you have happening at this time. And I can feel you’re also carrying the weight of the world on your shoulders with concerns for longevity of our planet, its population of people, critters, and resources. No wonder you feel helpless and hopeless.
You’ve been in the Connect family for many years and obviously have helped numerous members with sharing your stories and experiences. Since I’m not often in the groups where you’ve posted, I don’t know a lot about you. Do you live alone in your own home? Are you in an assisted living community? Would that be an option for you?
Any family members, friends or neighbors who call on you regularly?
With your eyesight failing it’s understandable to be frightened and I’m saddened to think that you’re alone. You’re obviously in a great deal of discomfort daily and have some critical medical issues. I’m encouraged that you have this inherently strong sense of survival. In our house we call it “the spirit of endurance”. To enjoy those seemingly small moments of pleasure, such as sitting in the sunshine, indulging in the colors and beauty of nature around us, to share contact with another human being or a beloved pet, is so important and leave a huge positive impact on our psyche.
Since you enjoy nature you might like our group https://connect.mayoclinic.org/discussion/whats-outside-of-your-picture-window-today/
We leave the medical world behind and post photos of the beauty around us. It provides a wonderful distraction and helps boost morale.
As I close this lengthy message it is important to address the pancytopenia. Your bone marrow is deficient in producing red/white blood cells and platelets, which directly impacts your immune system.This sets you up for the continued threat of infections and autoimmune responses. I’m so sorry for what you’re having to endure with your list of medical diseases.
Have you spoken with your primary care provider regarding palliative care? Palliative care is not an ‘end of life’ or hospice situation. Palliative care (known as palliative medicine) addresses symptoms directly to improve how the patient feels regardless of the cause. It’s specialized medical care for people living with serious illness and focuses on providing relief from the symptoms and stress of a serious illness—whatever the diagnosis. The goal is to improve quality of life for both the patient and the family.
We’ll be speaking again. As you can see, I’m long winded. 😉 Hugs, Lori
@peach414144 I selfishly was looking for information on side effects people may have experienced from hydroxychloroquine and came across your post. i was moved to tears and feel so selfish as i don't have half the issues you do. My prayers and deepest care go out to you. I too feel marginalized by the system but Lori brings up some good points I need to keep in mind. I hope to see more posts from you and I apologize for any extra work I may cause you by reading this post. I am in danger of losing my eyesight and am scared to death. I don't know how you deal with it. You are an inspiraton!
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@peach414144 I’m so moved by your reply and in the process of writing a longer message to you and will talk to you tomorrow. I don’t know how I missed your last posting and for that I’m truly sorry. Praying you have a peaceful evening. Hugs, Lori.