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High red cells and tired constantly.

I have morphea and a spinal malformation, constantly sore points underneath each morphea patch, muscle spasms, tiredness and watery vision. I have a high red cell count, it's at the high end of being normal. I take 1500mg gabapentin daily and 50mg morphine sulphate twice daily everyday. I drink 2 litres of diluted water everyday and eat healthish. Anybody else have similar symptoms?

  1. Each season brings challenges as I am a stumbling barometer. My biggest obstacle is many disolacations when I am moving.Every Spring with the help of a friend I have modified my own container garden. It's like my own "Secret Garden" the book memory.

    1. , oh gosh, that's terrible! I hope the vegetables respect the effort and bring you an amazing crop! - Warmly, Donna (Team Member)

  2. when pain and fatigue get really bad i work on a jigsaw puzzle. that way at least i am exercising my mind. i also have one of those under the desk exercise wheels. i can do half an hour while sitting and caring for the pain and fatigue.

    1. i have never given my cats eggs, but that's a wonderful idea. how do you prepare them for cats? glad you are still accumulating lots of eggs. you and i can never have too many! i keep looking online for dogs up for adoption. i hate walking alone because it makes me miss my last dog even more. i did have a cat who loved the harness. he would mostly want to hide under my hostas and sleep. i did try walking with him, but all he wanted to do was lay down and roll around on the sidewalk. i used to tie him out with a very long leash so he could walk around. however, i would keep an eye on him and i would run out of the house screaming when i saw he had a creature hanging out of his mouth. i usually was able to save those little lives, but my cat would wonder what the big deal was. totally off the subject, but my neighbor had a wonderful pitbull, and that dog and i had a close bond. i would go visit him when he was in his yard. he would gently put his mouth around my hand and walk me all around the yard. still reorganizing when my illnesses allow!

    2. , very true! Especially when they are still so expensive here, but not in other places. My cats enjoy them scrambled, one enjoys them sunnyside up, with a runny yolk, lol

      Have you ever seen videos of dramatic cats, going stiff, legs in the air, having to be dragged? That is all of my cats when we tried a harness (and a Santa hat one year!)

      That is so sweet about your neighbor's dog. Pit bulls are so sweet! I saved a baby bunny from a cat once. Sooooo tiny!

      Do you have much more organizing to do? I am glad that you're being gentle with yourself, and doing it when able, and not unduly pressuring yourself. - Warmly, Donna (Team Member)

  3. Rest


    1. Thanks Donna for the comment.
      It will be two years in July since I was diagnosed. I was 79 and very angry for a couple of weeks that my life had changed. It has been a process to get to where I am today. I have a strong relationship with Jesus and believe all things happen for a reason. I started looking at the positives. I could have had ALS, as my symptoms were similar. Myasthenia Gravis can be managed, and I can live out my life. I accepted that fatigue did not mean I was lazy and embraced quiet activities on those days. I have a supportive family, church family, and friends. I still live life to the fullest with some changes. I have no other health problems. At almost 81, that is a blessing. I have a great team of doctors. I have no complaints.

    2. , I'm so glad to hear all of this. I am glad that you have come to acceptance, and to giving yourself grace on the hard days. It is wonderful that two years down the line you have found peace. Thank you for sharing <3 - Warmly, Donna (Team Member)

  4. I listen to gospel music.🎶🎶 I pray to God every day. I drink water all through the day. 🙏🙏❤️❤️❤️💜💜💜


    1. Listening to spiritually uplifting music and spending some time in prayer are lovely ideas.
      I have a coffee mug I will use on days I feel especially challenged... it says, "Pray more, worry less." Even just seeing it helps me at times.

      And, hydration is SO important!

      Thank you for sharing here!

      Gina Miller,
      RareDisease.net Team Member

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