For just one day

gummyAlthough I’m in avoidance mode, I still have so many things to say. Last week’s daily post “Freaky Friday” got me thinking – oh and how I wish I could swap this whole situation with someone who actually deserves to understand it (why am I being so nice?).

For just one day, if I could, and since my daughter and I are one in her illness (she would have to be included) – I would swap her health with that of all the doctors who did not listen and told her and still tell her she needs to start exercising and attending school again, or the ones who say there is nothing wrong with her and that her condition is “normal”.

I would hope for a day like yesterday; a day where she could not get out of bed, not only because she was in such pain and so weak, but because her body was literally like gelly – like that of a gummy bear who was left in the sun for a little too long.

And I would sit in their chair and meet with all these now sick doctors and show them how I use my knowledge and compassion to determine why they are feeling that way.

For just one day and maybe they would actually learn something for once and know how to make a difference.

21 thoughts on “For just one day

  1. Sheep,
    Very nice post. You’re in the bargaining stage of the 5 stages of grief–not a great place to be in. I mentioned it in my Swap Meet post. I was there for a long time; a big rut for sure! No need to confirm, but have you tried counseling? I go to a not-free-free-clinic as I call it–siding fee scale place, so super cheap for me. It’s a pretty nasty place–my neighborhood and mainly court-appointed drug addicts/wife beaters, but I force myself to go and even have an evening appt. We talk about my frustrations with doctors, my health, coping skills, and whatever else is at hand! Just thought I’d mention. Sorry for the delayed response–deleted you by mistake as mentioned and had no idea you were blogging. Glad I checked!

  2. I think that’s a great idea A. The counselling I had when I had in Montreal revolved around what I was doing wrong – trying to figure out why my child couldn’t attend school. I think I was a little deranged by the whole thing and it made it worse for me at the time. Perhaps if I went in there on another foot it would help. I actually feel like I’m slowly sinking. Perhaps I’ll look into that today as I’m in school and I know we have help for the teachers and staff there and it’s through the health center.

    Thank you for the advice – sometimes it’s so easy to “not to” know what to do anymore.

    • I hope something works out. It is hard to find that right person you click with and I have very few (like 1) options due to the free-clinic and all the funding going to substance abuse/domestic violence in these parts. Sometimes I think I’d get better care if I became an alcoholic (damn those ulcers!), but I just got shifted to a new counselor again as they’re post-graduate interns and tend to come and go and so far, all is well. It’s hard to keep starting over with such complex issue, but I just force myself to go. Give it a thought as at least it’s a place to vent and hopefully gain some new tools for the ol’ tool box. 🙂

      • I so agree with you. It’s frustrating to know that more common illnesses or affectations get better care and that many of them are not as cripling. I used to be jealous of the care kids with cancer had when my daughter was suffering and not receiving any kind of support or care whatsoever. I suppose it’s always so much easier to deal with what we know or understand – the human mind is a complex thing and unfortunately not enough people are curious. I will definitely speak to someone. Ironically, it may even put things into perspective at the clinic. Unless I talk about or vent to influential people, no one will ever know how difficult and cripling this all is. Thank you!!!! I hope you have a good sun night. 🙂

      • There you go! Maybe it will help with the rut too, but learning about the five stages of grief is a good thing, if not familiar. When I was in that bargaining stage forever, as mentioned. Totally skipped over the denial stage as I had level 10+ pain (hard to deny that one). I can’t truly say I’m at acceptance, but think it’s more of a cultural/family of origin thing for me. I just think having a place to vent and get good feedback in return is critical. I do remember what you said about those other mothers (in a post I think?). I get frustrated that the breast cancer crowd gets free everything, including good, free counseling, but I really don’t want that disease so I try to shut up about it! It’s not fair dealing with rarer diseases, but what can we do about it? Finding those like us in this world helps! 🙂

  3. Oh I have wished for this too. When I had lyme disease, there was a particular doctor who was so cruel to me, I kept praying he’d have a tick encounter. No luck. Instead, one of the nicer docs got it and got it bad. Seems that sometimes life is unspeakably mean. I’m nearing getting back into therapy myself. I know I need it, desperately. the idea of another provider try out though, it fills me with dread. I know it’s worth it to find a good one, but the process….can’t we just fast forward to the good part?

    • It was funny until I read the part where the good doc got it really bad. :S

      Finding a good provider is definitely overwhelming – in our cases at least (note how I’m including myself?). It should go like this: we should post a “therapist description” (you know, like a job description).

  4. I wish I would’ve seen this earlier! I’m 19 years old and live in B.C. Canada. Your blog and story sound so much like my own.

    After a very long battle that started with me having to leave school at 13 because I was in unbearable pain – which the doctors told my mom was either in my head or just me trying to get out of school – I now have a connective tissue disorder diagnosis. It took four years before they finally diagnosed me at 17 and it never would’ve happened if it weren’t for my mom’s willingness to fight for me and us doing our research.

    Now they think I either have Marfan Syndrome, or Ehlers-Danlos, or maybe even something in between. I’ve read a bit of your blog and will read more as soon as I’m done typing this.
    It makes me so mad/sad to see that they told you she couldn’t have EDS because her heart is fine and the skin on her chest is not stretchy. You probably already know this but that is absolutely 100% incorrect. Not everyone with these disorders presents the same!

    They told us the same thing when I was 4. My lenses were dislocated which is indicative of a tissue disorder but they checked my heart, which was fine, and said that I didn’t have a disorder and that was that. They sent us on our way with no recommendation to keep an eye on my heart with regular echos or watch for other symptoms. I come to find out years later when all these other symptoms started appearing (the pain, joint dislocations, cysts etc.) that they can not rule out a tissue disorder that easily (especially on someone so young because many symptoms might not appear until later).

    My story is very long and complicated with many facts and steps to get from beginning to end – which I suspect your’s is also. I would really love to get in touch with you, maybe by email.

    Hang in there.

    P.s. you sound like an amazing mom – just like mine. Your daughter is lucky to have you, I would never have survived the years of pain, frustration and unanswered questions that lead me to here without that support.

    • Hello Katie,
      Thank you so much for writing! I’m away for a few days and will get in touch with you soon. Also, if you don’t mind i would like you to speak with my daughter. So far she is refusing any type of interaction but your story sounds so similar i’m sure it would do her a lot of good. 🙂

  5. Hi Sheep,

    I’ve been chatting w/an amazing, older teen with Marfan’s in BC (or they presume MFS and not EDS). I mentioned your ordeal (hope OK) and she said this place helped her a lot, but I know your daughter won’t go online: She and her mom were able to go there and travel is a huge ordeal for them, too (money/health/whatnot).

    You may want to check her out as they are on a tight budget and get some resources to travel. I gave her your link (hope OK!!!) as I think she could be a very good resource–very smart young woman and a Canadian! Wise beyond her years and great blog.

    Link to her blog on WP:

    Hope all is well (and if you don’t want me to carefully mention you on WP, let me know–should have asked–yikes!). I felt I could trust her and am *usually* a good read (lol).

    A 🙂

    • thank you so much A. I’m away for the weekend. Just got a note from this wonderful girl because of you. I’m touched beyond words. Will get back to you s soon as i can. Xo

      • Yay and no worries! I was worried you’d get mad I shared your story on WP out of utter desperation (problem-solver here). Still getting comments on this post so I saw Katie contacted you–so hope you 2 can help each other w/all your research and her 19-going-on-40 brains! Made my night/day! Have a nice getaway–you need a break! 🙂

        A xo

      • Finally, A. We have a diagnosis that includes her hypermobility. Gen suffers from OI because of her connective tissue disorder is how he put it. There is a plan to get her walking again and also he said she has intracranial hypotension… No wonder she can barely hear and her vision is all over the place. Will write about all of this when i get home this weekend. All of this means we can get help for her at home and that no one can any longer ignore her physical state or condition. It feels like a 7-year load of brick has been lifted off our shoulders. We feel so happy! What an amazing feeling. Please feel free to share this information. Xo

      • Great news (well, you know what I mean)!!! I didn’t know you guys were out of town seeing a doc. So happy you finally got a Dx–all making sense in my mind. I know about OI vs POTS from what I’ve read. Will wait for a post with all the details…. YAY!
        A xoxo 🙂

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  7. Beautifully honest post. My youngest has an as yet undiagnosed underlying disorder (thought to most likely be mitochondrial). We’ve been on this journey for 8 years. She has many medical issues as a result, most are invisible to the untrained eye, and the most debilitating (once we got her seizures better controlled) is crippling fatigue and muscle weakness.
    Wishing you and your daughter the best,
    Mrs Fringe

    • I’m sorry to hear this as I know all too well what it’s like. I also know it can be very confusing for doctors who are for the most part used to dealing with common issues. Yet, after years of reading and putting the pieces together my daughter’s illness is really straight forward – it’s simply not recognized.

      It takes only one doctor to make things so much easier although I know the condition will not get any easier.

      I hope a diagnosis comes your way very soon as it makes all the difference in the world (at least it does to us given that she looks fine but suffers tremendously – fatigue and weakness also being the most crippling component here as well).

      • I have several friends whose road to dx was/has been long, I’m glad you have your answer.

        Thank you for your good thoughts.
        Yes, I still hope for a name (dx) and relief for my sweetie.

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