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    A better day today

    So while I normally wake to much pain and stiffness in muscles and joints, abdominal discomfort (liver ?), and in a fog due to my oxygen levels yesterday was much worse. Ended up in ER. Stones,cyst,and a UTI! Explains a lot but between my hips that cause pelvic pain and my low back discs I was suspicious of a stone but just wasn’t sure. Now I know. Drinking lots of water and taking my antibiotics. Self diagnosis becomes more justified. My blood cells are not normal size and the #Mayo clinic Jacksonville Fl they have done labs and confirmed my suspicions that the HCV 3a I had along with the treatment consisted of Sovaldi/Ribavirin for six months leaving me anemic and with AVN bilaterally, bone marrow reconversion (fatty marrow rather than rich RBC factory) and so many other symptoms like emphysema, RA, Fibromyalgia, Sjogrens Syndrome, etc I thought it’s gotta be connected somehow?? My cells are not functioning properly like carrying oxygen (binding capacity) proteins also labs and UA show high levels. UA had blood and proteins. Deficiencies in vitamins and other nutrients or molecules? The fatigue, the temperature sensitivity, light sensitivity, blood clots, necrosis, just nonstop pain, swelling tissue everywhere especially connective tissue and on and on and on. Hope I pass the stone before I have to drive two plus hours to Mayo on Monday for labs and rheumatology consultation much needed. So tired of it all. Meanwhile my Dad is hanging on by a thread fighting his cancer and being ignored as if they don’t want to care for him, afraid he’ll die when under their care. It’s madness. He was abandoned by his urologist. No reference or help while the stent he put in was due for removal. New guy takes him on does a cystoscope looks at the stent (I gloved in and assisted as a former surgical technician) then he pulled it out? I was like why didn’t he remove it ? I had to be his advocate and even then after the doctor told me my Dads bladder was distended and backing up urine is causing the UTI. I had to show him the piss all over the OR table and the floor with wet diapers?? It’s the bacteria encrusted STENT!!! He finally agreed an put orders for surgery in. That was two weeks before Nicole hit. They didn’t call for over a month and we had to request a meet with the higher ups. Now scheduled for the 14th each day he is getting weaker. He’s on Bactrim which is weak compared to what they had him on in the teahab. UTI’s are way worse than I ever knew. Caused my dad to go into A-fib. Loose all muscle strength and visceral muscle loss as well. Mentally changed the man. So 3+ months to get a stent removed and now he has a fibrous mass popping in and out of his inguinal hernia. Really sad medical system we have. We can do so much better. I worked my whole life in the field and we can do it for sure. Like the implementation of the time-out right before your surgery in the OR with all staff silent we go over a process that is simple and assures it’s you and the surgery about to begin is correct and all details are checked one last time to avoid any mistakes like doing surgery on the wrong side or getting patients mixed up. The Mayo Clinic in Jacksonville Florida, I must say , operates with much more success and it’s obvious once you go. I feel heard and I have a care team and they all communicate. Their website portal is amazing and works. Just thoroughly impressed by the quality and difference of all the many many doctors I spent years trying to get to help me. I’m on the right track now. Back to drinking and passing this stone. “Dragged down by the stone stone stone stone stone (ruff ruff ruff) stone stone “. Who can tell what song or band is connected with on the lyrics? Hav Ra good day peeps. I don’t pray but truly hope your pain and suffering in any form is less so today than yesterday and lessened more tomorrow Forward we go. Thank you all for the support you given me👍👍👍👍👍O share a picture of one of many in my collection of the only hobby I still can enjoy to some degree. Enjoy Lambis Lambis spider conch -X-Large beauty from Philippines ❤️

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    Happy 2 Year #Migraine to me!

    Happy 2 Year Migraine to me! It's not deadly, just debilitating & soul sucking!
    I have amazing Doctors taking care of me. In fact I would be at the #Mayo in Scottsdale if #COVID19 hadn't happened.
    So how do I get through the daily? Some days I was able to get up & exercise immediately. I found if I walked right away, the endorphins would give me a 4 hour window of "health". I was even looking into going back to work in some capacity.
    But most days I'm a vampire. I hide from the light, live in near silence & try not to move.
    I have lost count of how many Occipital Nerve & Sphenopalantine Ganglion Nerve Blocks I've had. At least #botox is included.
    I am thankful to not be in the group of #Migraineurs that have had an episode lasting 20 years. My jaw fell open when I was told that they survive on 900 mg of morphine/day. Most days I would kill for 10mg of #morphine or even 1 #tylenol3. I can't get either bc of the #OpioidCrisis . Maybe it's a blessing, but most days it's a curse.
    I've been able to do some shows while heavily medicated. You just don't see what a mess I am afterwards. That my Brother has to help me at the airport bc I can't check myself in.
    I wear sunglasses all the time, not to be cool, but bc that's how I deal.
    So what keeps me going? I have had so many health struggles, both physically & mentally. I want you to know that our will to survive is WAY stronger than our will to die. & I've wanted to die! I literally have the #Suicide headache!
    So, I've just taken my second dose of #Emgality . Fingers crossed it works! But even if it doesn't, I want you to know it's gonna be OK! I have a Husband who loves me, a roof over my head, no food insecurity, & clean water to drink. We also have 8 Nieces & Nephews growing up fast & we need to be a positive example for the kids.
    I know most of us grew up thinking it was shameful to talk publicly about personal problems. I am so happy to be in an era where feelings are to be expressed & not suppressed.
    I am thankful that there are people who will love you as is even if getting dressed & leaving the house isn't an option most days.
    So I leave you with this....Bad times don't last!💋 #ChronicIllness #Spoonie #youdontlooksick #InvisibleIllness

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