ET with Jak2 and allergies/fatigue

I get it!! I'm with you 100% on the frustration and loss of energy. If possible use that anger for energy. You will likely adjust to this and keep posting your feelings on here, this site has been helpful to me. Hugs.

You literally could be me. 58F. I was dx last July after seeking treatment for fatigue along with easy bruising and bleeding. I had gone to an allergy specialist just prior to that because I had a constant runny nose with congestion, developed reactions to stings, poison ivy, and iodine, and had trouble getting a deep breathe at times. I learned that I had no allergies and had the lungs of an 18 yr old (I do cardio like a crazy person.) I also have bad concentration and memory issues. This whole thing sucks and has completely changed the life that was supposed to be mine and my husband’s time with the kids grown. Nope, I’m too tired and I feel like shit all the time. I had an arterial clot in my calf after a hysterectomy in 2023 so I’m considered high risk. I decided to make things more interesting and threw in some breast cancer in September on my birthday. Apparently one cancer wasn’t enough, so treatment for ET was postponed until I finished active breast cancer treatment. My platelets have only been in the 600-700s for years so no one knows why some have symptoms and some don’t. I started HU in April and held out hope for some relief. Those meds reigned hell down on me and I was switched to anagrelide. Same. So now I’m finally off to a specialist. I just keep hoping and trying but I am not ok. And I take allergy meds every day for allergies I don’t have. Oh I am also supposed to start meds for breast cancer recurrence that block all of the hormones I pay a lot of money for. Good luck to you, all I can say is let’s keep trying and advocating for ourselves because I am not a tired person and I cannot deal with this fatigue…and allergies lol🩷❤️

@jodyjazz Wise words!

@jodyjazz I agree that the line between giving up and moderating is challenging. I'm currently struggling with bicycling. I was an avid road cyclist beginning in my 40s and until I started experiencing hip pain about 6 years ago, which has since been diagnosed as arthritis. Bought an e-bike which allows me to better manage hills but I haven't quite mastered the weight difference between my old road bike and this new bike which is twice as heavy. So, I ride a nearby trail occasionally which isn't nearly as much fun and I am tempted to just give up and sell the bike. The fatigue that comes along with an illness like ET and the medication for it also requires I don't workout as hard at the gym so moderation/modification have become my favorite words.

@debhammel
Haha, I hear you!! Moderation is one of my least favorite words; next to "waiting" my very least favorite word. The key, IMHO, is to keep putting one-foot-in front of the other until you can't.
Until I turned 75, I was taking no medication and still snorkeling and kayaking. Before that an avid horse rider, water skier, sky diver, and dirt biker. No mas! But one-foot-in-front of the other.

I, too have found that I'm so very tired a lot of the time. I have JAK 2, with ASXL1 and TET2 mutations and take HU every other day (at my insistence) and have lost lots of hair with the texture of what I now have frizzy and thin. I get easily depressed. But here's what changed all of that: My husband had an emergency colon resection a month ago due to a complete blockage which showed adenocarcinoma and due to complications with the resection, he had to have an ileostomy pouch. We both hope they removed it all of the cancer but we'll be visiting with MY Oncologist in August. We have to wait until his ileostomy is reversed in a few weeks and he has healed from that. I have become the only one who can lift, mow, drive, take care of our home and yard and change his ostomy pouches every 4 or 5 days? He has lost 20 lbs and I have lost 5 due to the change in our eating habits and of course-stress. I found out this: I can deal with my blood cancer. I am grateful that HU works to lower my platelets. I am strong enough to do what I need to do and I can be a support to my husband in his trial. Yes, I get tired especially in the afternoon, so we both retire early every night. He is awake every couple hours to drain his ileostomy pouch and I am checking on him every 2 hours as well, hoping the pouch isn't leaking and that he can actually catch more than an hour of sleep. Each day now is a gift. Each day I am renewed in ways I thought impossible. I am stronger than I thought and can do more than I thought I could and still handle ET and Hydroxurea. My mindset has definitely shifted to doing the best I can in spite of things I can't control.

@mumblipeg

You are a ROCK STAR!!! I salute you!

ET is not a walk in the park, but your experience reminds us, other things are much worse.

Sending love and prayers for your husband, and for his extraordinary wife.