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    • #27768
      Jen Cueva

      I recently had another MRI and did not react to it as I would have thought since I have already had several. In my column, this week, I share my frustration with myself with this simple MRI.

      “Tough days and tests are a given, but together, we can get through it all.”

      In my 15 years with PH, I have had hundreds of tests, so I never expected these feelings from such a simple test. Have you been frustrated with yourself after a test? Please give it a read, and let’s talk about this.

    • #27774
      Sally Hoffman

      Hi Jen, I am sorry to hear you had such a tough time with your recent MRI. MRIs in general are tough because they take so long and make such awful noises. But your column made me realize that possibly all our experience with all these tests is what is making us anxious. We know, it takes a long time, so we dread it. We know it is noisy, so we dread it. We also know that every time we take one, the news could be bad, so we dread it What do you think?

    • #27776

      Hi @jenc and Sally. I’m sorry you had such a difficult time with your mri, Jen, but YOU GOT THROUGH IT. Remember that when that word ‘weak’ comes up. At most, you had an ‘off’ day (or just an off hour) and we’re all entitled to those. I know you would tell me that weak has no place in our self talk. My brother can barely do even an ‘open’ mri because it’s too closed in for him. He’s had them give him a relaxer at times, so you’re so far from being alone in your discomfort with this particular procedure. After living with ph for 15+ years, you are anything but weak! Dealing with ph, for anyone, pretty well boots those self derogatory words we use with ourselves to the curb. Not saying I still don’t struggle with those words toward myself at times, I do, but we do what we can at any particular moment in time. And, YOU GOT THROUGH IT!!
      Sally, I think you make an excellent point. All these procedures & tests we need with ph (and any other issues we may have), for me, make me nervous before the test & during the test, then you’re left hoping it’s good news. Even when I’m feeling pretty good, I’m also concerned that any test will show something that means I’m not doing as well as I think I am. Then I feel foolish when I get the good news that I let myself worry so much. That word foolish does no more good for us than that word weak.
      The test that I get most frustrated with myself for is 6 minute walk tests. I go in feeling like I’m going to ace it, end up no where close to the distance I intended to walk. Takes me at least a few days to get past using those not exactly helpful words with myself!

    • #27789
      Jen Cueva

      Thanks, @mainegal. I do think that you are correct. Knowing what is to come or not of the outcome certainly can bring on anxiety. For me, it takes me to a time several years ago when they thought that I would not make it, and I had many MRIs then. I think since then, MRIs are almost traumatic for me. It reminds me of those times.

      I do not usually have any issues with testing, except the dentist, lol. I always say I prefer a heart cath over the dentist any day, hehe.

      I appreciate your kind words, and yes, I agree with that, all causing some test anxiety.

    • #27790
      Jen Cueva

      Thanks, @dawnt; you always kick my mind back in gear with your thoughtful posts. I think that I remind myself how much I have made it through when I have these days. This was so unexpected, so it was a bit more frustrating than usual.

      But yes, we are far from weak, and we should be proud of how well our bodies are working for us as they go through hell. We should really appreciate our bodies and love ourselves more, for sure. Thanks for this, and I hope that you are staying safe.

      -big hugs from Texas.

    • #27793
      Colleen Steele

      Oh no Jen, I didn’t realize how difficult that MRI was for you. I’m so sorry! Hopefully it will have been worth it and it will provide much needed answers. I assume you haven’t received results yet?

      I’ve had several over the years and of course Cullen has. When he had PH the MRI’s were so hard on him because lying flat made it harder to breath and the noise triggered his migraines. Don’t be so hard on yourself. You are not alone with your struggle to get through these kinds of tests. They aren’t easy to go through and I’m sorry you had to.

    • #27798
      Jen Cueva

      Yes, @colleensteele, lying flat is another issue, but they did allow me some rolled towels under my neck to try and help; that did not, so so many reasons to be anxious, I guess. Thanks for sharing the experiences when Cullen needed the MRIs. I mostly thought about the hospitalization, and no matter how hard I tried to block it out, it kept coming back to my mind.

      If I thought that it would be that bad, I would have taken my Ativan.

      Not much back, because the report says artifacts due to movements, so I am unsure of the next plan. It also says I have some degenerative changes, which I already knew that is neck and back. I am debating leaving it alone unless I have any active seizures because I feel like we are not getting much information. I am awaiting the neurologist’s advice. I thought that I would hear back from her office today, but have not yet.

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