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Posts (6)

Wed, May 20 3:46pm · Husband has Essential Thrombocythemia (ET) & MCI in Blood Cancers & Disorders

Ty for the link. Having a good day. Hubby is happy & simple to care for. I took a couple hours break for myself& did some baking. Since our apt. Is quite small i can be in my little kitchen, keep eye on him, & he has comfort knowing where I am because he can see me & chat when he wants to. Works ok

Wed, May 20 3:39pm · Husband has Essential Thrombocythemia (ET) & MCI in Blood Cancers & Disorders

Ty Ty ty…I downloaded the manual& am reading through it. So far it is spot on with me, daily life, challenges, and education. This will get me up to speed on what to do. We don't have family near us & have a few casual friends where we live in retirement community. Really I am on my own figuring this out until now. Some days I am on verge of melt down, no trigger just daily stuff catches up & am emotionally drained.. I am now encouraged to see i am on the right track & will learn from this manual how to care for both of us. I try to be strong, successful most of the time. My go to place is in the kitchen today. Couple hours of baking and all is well again.

Mon, May 18 1:51pm · Husband has Essential Thrombocythemia (ET) & MCI in Blood Cancers & Disorders

Please share any more tips to ease daily life & caregiving

Mon, May 18 1:35pm · Husband has Essential Thrombocythemia (ET) & MCI in Blood Cancers & Disorders

Ty!! Haven't heard of this, will check it out. Very helpful Indeed

Sat, May 16 12:00pm · Husband has Essential Thrombocythemia (ET) & MCI in Blood Cancers & Disorders

Ty for of your input. Habit sounds great,but travelling its no longer an option. Discovered this the hard way. But I am learning allot from the many posts & have implemented a couple tools mentioned. Successful& useful. I am eager to learn from these testimonials. Simple item of daily calendar to track days&make notes. Also a wrist watch that shows time,date&day of week in large numbers has been very helpful. Now knowing I am not alone&have this forum is quite a relief. So many Dr thought i was just a nut case, or overbearing spouse who was just making up stories. Geez! So many test with little results. But platelet Dr confirmed MIC & move forward. I informed d r at appts that info hubby provides cannot be counted upon as true or accurate. I know this now too. The answer to a question can change multiple times in 5 min. I feel relief having this forum to discuss it. Ty!

Thu, May 14 1:28pm · Husband has Essential Thrombocythemia (ET) & MCI in Blood Cancers & Disorders

My husband has both, some days good, some not so much. ET is managed with hydra & aspirin MCI is a learning curve for me daily. Some days it is overwhelming. Some days almost normal & this pandemic has made life challenging . Anybody???