I know I'm preaching to the choir yet it's nice to have a listening understanding ear.
Just had my 16th and 17th malignant skin cancer removed since receiving FCR in 2018 despite following all the recommendations
My back pain that became radicular pain is due to some severe spinal stenosis and a large herniated disc. As a surgeon who has done these surgeries I know it's the only long term answer. But unfortunately I was not uMRD in April and after a recent rotator cuff repair with nerve decompression on the same elbow and wrist I have so much selling and bruising I've decided to put the surgery off until a few months after completion of the 2 years of V on the V + O R/R protocol.
The injections and meds only help so much so
after 4 years of waiting on my dream ski year, snowshoeing PR feats, and hiking/kyaking goals and records to conquer are all on hold again and looking like it may never happen at all
Then learning that my urinary retention with the embarrassing frequent trips to RR, leaking etc are not due to a treatable condition but to an S3 nerve root problem and need for MRI and possible nerve stimulation implantation
And my ever deteriorating teeth
A retinal bleed
And 6 of 8 months of non covid viral infections with the 6 week episodes of post-viral syndromes plus secondary bacterial infections
and recent bout with influenza (all of which could have been avoided had I not been faced with the choice of living alone or putting myself in harms way to be with my wife)
and constantly trying to find shoes, making inserts and proper padding for my feet so I can hike and walk
the battles to stay positive and active are becoming continually more difficult
Yet I want to praise God for all of his goodness, mercy, love, and plan for all our eternal Glorious opportunities in the world to come.
I want to praise him for all the strength and help he has given me every time I have felt that I could no longer face it or go on.
I want to praise him for peace and comfort he brings, and all of the lessons that I have learned through all of these challenges.
and I want to be grateful to him for the ability to get every day and at least do something that brings peace and solace to my soul among his beautiful even though what I'm able to do is far less than what I would like to do and hope to do and have done in the past.
I want to thank him for all of you on this site that have offered words of comfort, support, and who have answered questions that I've had
I think I'll share a few pictures of things that have lifted my spirits of late.
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skipro
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You are strong and an inspiration to many of us. And please don't forget your wonderful pictures you always share with us - GOD gave you your many talents too.
Amen ! Even in our trials he is there and the beauty of his creation is a comfort and inspiration. . Ty for always being so open about your struggles while somehow simultaneously still being able to encourage others. Your pictures always make me smile ! Prayers,
It’s clear that your beliefs offer you sustenance and support at the most difficult of times. Religion is a touchy subject on here and it would be extremely unpleasant if members started to disagree on it. Could I direct you to our posting guidelines on this subject for your guidance;
12. ‘Whilst religious well wishes are permitted, please do not proselytise or use religious text or quotations in your posts. Likewise do not post content of a political nature. Doing so is always divisive and contentious and everyone on the site must feel welcome regardless of their religious or political beliefs. Do not post links to religious or political sites. Such content may be removed at the discretion of the admin team.’
Skipro, I so enjoy your positive outlook no matter how difficult things can become. You do search for joy in each day. My strong beliefs in God has carried me through some rough patches in my life also. Your lovely photos are always appreciated. Stay strong. 🙏Sally
Dear skipro, I found your post to be very encouraging with all you have been through and are going through. I am my husband’s caregiver and rarely post on here but today I must. It breaks my heart that with all you just shared someone could take the focus off that, not say a kind word and then belittle your faith. I did not feel like you were pushing your religion on me at all. You were just showing thanksgiving which is something you would think most people in your and others on this site would be doing at least from time to time. At the risk of being shunned by this group I have to say: you will be in my prayers for Gods healing touch. May God Almighty look graciously upon you and give you His peace that passes understanding as you go through some difficult times.
I can so relate to this post, I imagine this is true for almost all of us. Having other health issues that become tougher to deal with when you also have a disease that likes to rear up at any given time!
Thanks for the amazing pictures and the uplifiting thoughts. I do hope those who posted here read Newdawn's reply also. Although I am certain they are all well meaning we need to be cognizant of what we say about politics and religion in our posts. Just a friendly reminder and I appreciate Newdawns position.
skipro, your sharing that no matter what you are going through, you seek strength from your beliefs in hope and peace. Our beliefs should be positive to build us up. It's so easy to slip into a miserableness. I've received much building up from reading the positive messages on this forum of overcoming the bad times by one going to their beliefs. We may come from different thoughts to find hope, but I sure appreciate all who share. Thank you to all! And thank you, Newdawn for reminding me of our guidelines. 🙂 Sandra
Such a tightrope we must walk. Hang in there. You are doing it right for you. So sorry about all the “other” medical problems going on. Muscle/skeletal problems can make you miserable. People don’t always understand how hard it is to live with pain on a daily basis. Pain that won’t go away without another surgery and even then you don’t know if it will go away completely. This kind of pain will not kill you but at times you wish it would! I so appreciate your positive attitude about it all. Thank you and God bless!
I purposely seek out posts that incorporate the spiritual which is why I was glad you included His name in the post title. I would think someone not being spiritual could then choose not to read that post. My belief in the name of Jesus has healed me many times and given me strength to stay positive through all, knowing I am set for the eternal. Why wouldn't I want to share. God bless.
Dam, dam, dam that’s alot. Thank you for your transparency & praises through it all. I decided after my last visit with my Cardiologist that I would stop feeling sorry for myself because of the 50lb weight gain. The doctor did a 180 degree turn basically telling me that a Pericardial Effusion was a normal finding while I am still having chestpain. That any doctor could order Lasix, that Lasix would not take off 90lbs & that he could not do anything more for me. He was just the level of rudeness I needed to snap out of it.
I came & I conquered, I got what I needed; my lasix with appropriate instructions & the potassium & magnesium with it. I can not be a sore winner🤷🏽♀️ He felt guilty that he recommended to increase the Zanubritinib after the original Echo showed Right Atrium & IVC dilatation. Which meant early signs of Congestive Heart Failure & now Pericardial Effusion is signs of the progression. I wasn’t there to blame anyone because that’s counter productive but he was so wound up. I was so proud of me because I cut through all that bs, didn’t get rattled but stayed firm on my request. He felt my +2 Pedal edema & we stopped talking & he wrote my prescriptions.
I decided then to listen to this awful truth that they can no longer help me. I am off of Zanubrutinib & 6 weeks since, my labs are great. That day I got home & worked out for 90 min, low impact & broken up over the day. And guess what, no chest pain. I got out of my own head, stopped talking about what I could, what I have done & just did it! My brain is even working better. I am sore but icing, elevating & using my multiple massagers. I GOT THIS🙌🏾 Everyday since 90min of low impact Cardio, Resistance Training & now more Abd work💪🏾 I refound my MOJO…
And yes thank you GOD for it all because I have really learned to enjoy everything in the moment. I had a great family reunion July 20th & looking forward to my 40th HS Reunion Labor Day Weekend 2024🥳
Prayers to you Skipro, you keep us together dude. Just your fighting to ski reminds me of the strength we still have despite it all. So sorry for your struggles but just know that we are right there with you fighting the good fight!!!👊🏾
Yes thank you I am enjoying my growth too. I was so naive to this side of Healthcare. Its a harsh bitter pill to swallow at times but thank GOD for my medical background, my new found humility & my desire to be whole & healed. I don’t waste my energy on stuff that doesn’t serve me anymore. And I still listen no matter how awful the messager is because sometimes that is how your blessings are delivered 🤷🏽♀️
I just can not believe how much I missed my long consistent workouts with all these awesome benefits; strength, flexibility, stamina, confidence, decreased pain, better sleep, decreased appetite & even my brain functions better. I can solve problems that I once found irreconcilable before. I truly believe in all honesty that I was right about my cardiac issues & so was the cardiologist. The discussion boiled my blood just to the right level that & I hit the Homegym running. Slow & Steady is still my mantra & I feel really good. I have many friends & family going through far worst so Gratitude is definitely my Attitude.
Its funny though because doctors love to challenge me & I don’t give them anything anymore. I may have to remind them that this is a paid consultation & in the end, its what I want periodt. But I stay monotone, on track, firm & use the available data to get my point across. I can even decipher better who is really working in my best interest. My Aug 5th Cardiac Rehab appointment just came through from my June 11th request. Victory is mine🙌🏾
I always keep in mind what this site reminded me of ‘what would you suggest if you were your patient’. I was always taught to be overly cautious & that way patients don’t die. I handle me with kid gloves. I am a hope for the best but prepare for the worst type of person in real life lol.
I love your pics & stories so keep them coming Skipro. Stay Well & Stay Blessed🙏🏾
over the last few days have come to realize that none of my new medical problems are emergencies that have to be solved overnight. It's taking a lot of pressure off.
it is a new mindset that there aren't many doctors like I used to practice who or card to get people what they need very quickly.
That seems to be a lost art in the medical world today and sometimes it frustrates me to no end so I end up more stressed than I need to be.
Anyway, thank you for all of your kind words and all the best to you.
Great post Skip. I had Synovial Sarcoma around 71/2 years ago in my hand and I thought I would not see my sons 21st birthdays after being told how serious it was if it spread. It was my first thought. Well, Saturday night it was my son's 21st and while doing the speech I had a flashback to that repressed memory. Keep pushing on. It's worth it. I have now started my I&V treatment and just try to be positive day by day. Thank you to a few of people on this site for keeping me calm on my CLL journey. I read and take hope from your posts.
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