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    • #32067
      Colleen Steele

        @jimi shared an update and I am posting it here to make sure everyone gets a chance to read it.

        I am back, I have really missed everyone on this forum, I had forgotten , people suffering with the same CB or similar ailments, can discuss the ups and downs of this disease. My diagnosis keeps changing, my labs seem to point to many ailments. I still have shortness CB of breath, I have moved from CPAP to BIPAP, started dialysis this week, and I do not know if they are trying to let my kidney heal or this will be my new normal. My vision is still changing and bouts of depression is finally under control. Finally got my hearing aid after 3 years and I take steroids for my frequent gout flare-ups.

        Life is still good and getting better everyday , I found that worrying over those things you can control and change is powerful. Putting the other things in a higher power is comforting. I hope everyone has CB made a decision on whether the “covid” vaccine works for you or not, there is no one size that fits everyone. Let’s all come together and pray for our combined healing

      • #32068
        Colleen Steele

          @jimi Jen and I have been worried about you my friend! There is never any pressure to communicate here but I have to say, I am relieved to hear from you. We knew that you were going through a lot and wondering whether things have improved or not. It sounds like a mixed bag but that you have a good attitude in dealing with it all.

          I’m sure none of this is easy so please know we are here for you on good days and bad. Share any emotions you feel the need to express. We will always be ready to listen.

        • #32071
          Jen Cueva

            Hi, @jimi,

            Last night when Colleen texted me that you posted, my heart was full of joy and relief. We have been so worried that you have so much on your plate in the previous post.

            It sounds like things are up and down for you. But, for me reading your change of mindset makes me grateful.

            While struggling through your issues, you continue to offer love and support to others. We are so happy to have you back with us.

            As Colleen mentions, we are here anytime you want to voice your concerns. Good and bad days happen; we all can relate and support one another.

            Hugs are coming your way from Texas, buddy.

            Speaking of Texas and worries, @texas2018, how are you doing? I have been thinking about you and forgot to reach out. Please let us know how you are doing.

          • #32076
            Jimi Mcintosh

              Thanks to all of you.  “Angels” get there wings before they get to heaven. What you do is huge , while suffering with PH, you can still give to others.  My spirit is getting better and I am almost past the “ Why Me” , I am waiting to get back into PTSD therapy.  I now know where my brain scan looking for a tumor , never got delivered to the VA, try were on one of the pallets in the basement. LOL.   I wish it was by legal to share the drugs we depend on those members that cannot afford them.

              How many people on the forum are planning to get the Covid booster? I am getting the flu shot next week and the booster inn2 weeks. It is great to know that with chronically ill people have survived and are thriving.

              • #32082
                Colleen Steele

                  @jimi that is horrible how your important medical information was placed in a basement and forgotten. Found now and in the proper hands I assume?

                  I hope the PTSD therapy helps you and that you can get back into it soon. It’s good to hear that is offered and an option for you.

                  My family needs to get the flu shot ASAP and considering the booster shot.

              • #32088
                Jen Cueva

                  Oh No, @jimi, that isn’t good. Your story reminded me of some diagnostic testing pre-PH while trying to get a diagnosis, lost in a flooded basement. Therefore, they had nothing to prove those tests results.

                  I am hopeful that your records are now where they are needed.

                  PTSD is challenging, I am certain. My hubby, a Navy Vet, has some PTSD, and in the last few years, it has been challenging for him to cope. I hope that your PTSD therapy will help. Already changing your mindset, will help although I know that certain things easily trigger PTSD.

                  I am receiving my flu shot next week. Because I had my vaccine later, my PH team wants me to hold off a bit on the booster.

                  Sending you much love and thanks for such kind and heartfelt works, buddy.

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