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Polycythemia Vera: Just been diagnosed

Blood Cancers & Disorders | Last Active: 2 days ago | Replies (400)

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@wendy517

I couldn't agree more, Lori has and I know will continue to be a huge support to all of us, thank you Lori!
I was a blood donor for YEARS and when I found out I had the good "baby blood" it motivated me to give as much as possible. About 5 times a year, it was easy peasy for me, I'd fill the pint in less 10 mins and had no probs with walking out 10 mins later after a juice. That had kept my PV in check, who knew? Then we head to covid...no blood drains as I called them or now, jokingly, Vampire Visits 😉
Prior to the PV diagnosis, I went through a horrible gastrointestinal few months, lost close to 40 pounds and finally diagnosed myself with the help of my health coach with SIBO - ALL the years of goastro docs telling me I had IBS. Nope, had SIBO which is the #1 cause of IBS and here's the kicker - curable! I was kind of furious, I've had these issues since a kid. One bout of food poisoning can cause it, if you have IBS - research, read and I can give you books and podcasts to follow etc. I educated myself. Apparently gastrointestinal docs don't tell us this because most don't want to do the work involved to fix it, they want a pill. It's not easy but I had NO doubt I was putting in the work. I've healed my gut and can actually enjoy a cup of coffee now and then. Well worth the work to me, not for coffee at all, but for having a normal life.

Sorry for novel, moral of the story is, do your research, get in tune with your body, don't expect doctors to "fix you" but you need their guidance and advice. Push back with questions, ask them and be your own advocate.
I've been dealing with the fatigue and other not great side affects of PV, next BP spiked and it's looking like because I need to be more active....like I used to be and LOVE. I'm on a plan (thanks to my best friend) to build my endurance back up to go out west and ski for 2 weeks this winter. Of course that comes with not skiing like I used to ski and may need to get CBCs done and blood drawn, easy peasy. I will not give up what I love to do if at all possible and continue to live life to its fullest! I'm a young 60, my Dad is 88 and mom 83 (who ski's with me) and they don't run like they used to but kudos to them to always wanting to do the right thing health wise and keep active - body, mind & spirit. That's key.

End of novel....ps, I'm not reviewing so I'm sure tons of typos 🙃

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Replies to "I couldn't agree more, Lori has and I know will continue to be a huge support..."

Good morning, Wendy. We are all part of a big family here in Connect, aren’t we? Some days I feel like that elderly auntie who sticks her nose in everyone’s business…just like my favorite Aunt Charlotte. But she was a fount of information, using her experiences and knowledge to help family, friends and community members. I learned a great deal from her and my mom. They were both helpers.

I remember watching an interview with Mr. Rogers.(Mr Roger’s Neighborhood) His mother told him in times of crisis or when you get scary news, 'Look for the helpers’.

So many members join Connect because they might be frightened of the unknown after receiving a diagnosis, they may need a shoulder for support or just to be able to talk with someone who has ‘been there’ and understands what they’re going through.
All the members in Connect can be helpers for each other. By sharing our stories, medical experiences, personal perspectives, coping skills, etc., we all play a vital role in supporting each other. We can offer hope to each other.

So thank you for sharing your story about perseverance in finding an answer to your health issues and what you’re doing to continue pushing forward each day by adapting and rolling with the punches! You never know how many people you may have helped or uplifted today…me being one of them. ☺️
Keep up with your endurance training! I hope you get back out west to ski this winter! I’m blown away that your mom, at 83, still skis!! I see where you get your tenacity!