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  • Column: I Wish That Living with My Complicated Kind of ‘Normal’ Were Easier

    Posted by brianna-albers on July 1, 2019 at 7:00 am

    Happy July, everyone! I can’t believe how fast June went. I always expect a nice, low-key, no-pressure summer, but instead I get chaos and fatigue. Oh well!

    I really enjoyed Alyssa’s latest column. About a year ago, I was experiencing some debilitating headaches with no obvious cause. I’d never really dealt with chronic pain before, and I struggled to make space for it in my everyday life. I didn’t know how to communicate my situation to people. I was healthy. I didn’t have pneumonia or anything like that. But something was wrong, and I didn’t have the words for it.

    Alyssa puts it well: sometimes you wish things were easier. Easier to explain, easier to fix, easier to cope with. But, of course, that is rarely the reality, as much as we wish that wasn’t the case.

    Is this something you can relate with? How do you explain your health issues when words are hard to come by?


    deann-r replied 5 years ago 4 Members · 4 Replies
  • 4 Replies
  • kelly-miller

    July 1, 2019 at 3:31 pm

    Brianna, I think your link to the column didn’t work for some reason. I found the article you were talking about of Alyssa’s, so here’s the link:

    Lately, the thing I’m having trouble expressing to others is the frustration & fear I’m going thru regarding finding a new set of doctors. I just moved from Houston, Texas to Saint Augustine, Florida, and I have to start from scratch with my medical team. I thought it would be easy to begin with a PCP & work outward from there on pain mgmt., G.I., urology, pulmonology, cardiology. Well… no. First, no one’s taking new patients who are on Medicare; second, no one wants to touch me with all my issues & meds. They hear about the morphine & hydrocodone and run for the hills!

    I’m sure all of you can relate to the fear that is gripping my mind and slowly squeezing until I have a never ending headache. My husband is very supportive, but deep down he doesn’t know what this feels like. Right now, I only have one new friend here, who I would never dump these emotions on at this early stage of our friendship. I’ve tried talking with my aunt (she’s like my 2nd mom since my mom passed away in 2007) and a friend from back home, but unless you actually experience the possibility that you may not be able to receive your meds that have been the only ones to work on your weird body, the only ones to hold off the chronic pain that kept you totally away from a social life at one time, the only ones that help you breathe normally so you can at least carry a conversation out in public, the only supplies that keep your nutrition up and your bladder eliminating waste with no infections, you cannot imagine the feeling similar to your car heading at breakneck speed for a cliff at which it will go careening over the edge to tumble to the bottom where it will smash on the rocks waiting below.

    I don’t know how to explain this to my friends and family, much less the doctors who continually turn me down over the phone without even knowing my true situation.

    I’m not usually this depressing sounding, but I am in a very scary place right now when it comes to finding doctors who will prescribe my meds & help me get my supplies. I know it will work out – I just wish it could be like every other “normal” person sometimes! I’m sure y’all can relate to that 😏

    • deann-r

      July 1, 2019 at 6:17 pm

      Kelly, sorry to hear the move has become stressful in this way. There’s so much more that we have to consider and deal with when we do things. It’s probably one of the big reasons I haven’t taken the plunge and moved. I have a pretty good setup where I’m at an just don’t have the nerve to rock the boat. Good luck with everything. I’ll say a little prayer things will fall into place for you.

  • ryan-berhar

    July 1, 2019 at 6:04 pm

    Normal for us is different than normal for most people. Most of the time, I deal with it ok. But there are definitely times when I wish it were easier. Everything is so difficult.

  • deann-r

    July 1, 2019 at 6:27 pm

    It does seem like life should be easier on so many levels. I figure nobody really wants to hear that my feeding tube port just leaked through my t-shirt or that my foot is killing me because I wore the wrong shoes, so my go to is, “I’m good, how are you?” but for some reason that opens me up to all their drama. So I listen as my eye is tearing up from sunscreen because I can’t reach to wipe it.

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