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We all struggle sometimes, right?

Thursday, May 02, 2013

So it's been a little over a week since I blogged last. emoticon

I've been struggling...

so 1st I'm sorry for not sharing it more with you
and 2nd I'm sorry for letting myself, and others perhaps, down in any way

Last Friday I finally got myself in to see my primary doctor. It's been awhile. My kids have needed more medical visits lately and I can only manage so many long trips in so many days.
(My "kids" are over 18, but their own disability type issues mean there are many things they still need my help with - med appts in only one of those)
So, my purpose was to request PT (physical therapy) to help heal my right knee that I twisted some back in January (maybe) when I slipped and almost fell on icy sidewalks. It's still more unstable than I'd like so I've been using 2 canes - for the last 3-4 months and that's now causing pain issues with joints in my arms/hands.
Doc wants x-rays! UGH!
She's not fully onboard with the EDS (connective tissue disorder) in my case and doesn't yet understand my body's weird thing with injury or with pain. But she's the best of what's available here in town. I just have to work at educating her on most visits.

Results: hmmm - we didn't get them Friday - it was late afternoon by the time I left there. emoticon
She did order the PT - and that office actually called me before I got home to set the first appointment for 7:30 Monday morning! She also set up a referral for an ortho-doc. One will begin visiting our town in a few weeks - and at this point we were fine with waiting it out.
So... Monday morning, after my PT appt, I had to bring one of my girls into the clinic - it was a more urgent issue w/her ears so we were seeing whoever had a spot... turns out it was a NP who was unsure about something she saw so she called in an MD, who just happened to be my doc! (duh-duh-dummm) After seeing my daughter she turns to me and says: "WE need to talk!"
She informs me that my x-rays looked REALLY BAD and it's imperative that I get in to the ortho people ASAP which means driving into the city and not waiting until the new guy comes here! emoticon
After we left the clinic I check my phone - the clinic in the city has called and I have a new voicemail! Their message is short: "We've scheduled you an appointment with Dr ____ for tomorrow afternoon. Please contact us if you cannot make it."
Normally it will take a good week or two to even get in to see them! Clearly, all the professionals viewing my x-rays are very concerned about something! emoticon

That appt was yesterday. As docs go, it went well - we got along famously! As visits go, it was not so good. Theory 1 is that when I twisted my knee back in January the kneecap was dislodged temporarily (something quite common in EDS patients, btw) and it's healing slowly (another common issue with EDS). Theory 2 is perhaps there was some tendon damage then and that too is healing slowly. Either would account for the ongoing lack of stability requiring me to keep using 2 canes.
In addition - and this is what got everyone so concerned - both knees are seriously lacking in that stuff that's supposed to be between the bones... as in there is no space! This they tell me should be excruciatingly painful and most people are totally unable to walk with knees like mine! emoticon Well, THAT explains it! Now it makes perfect sense that it hurts to walk or even stand for long my case long meaning over 10 minutes without sitting and resting some!
Options: Surgery - total knee replacements. At least we both agree not to go that direction! Doc says the surgeons there usually have to be convinced that surgery is the best option. I say, NO, because I don't do so well with surgeries - known for weird, out-of-the-park sort of complications and because everyone that I know who's had them has an awful time of it. One friend has literally been in bed for months and has now had 3 replacements, the latest still isn't taking well. So, no - nothing can convince me surgery would go well in this case.
Injections: NO to that too - doc was keen on it at first; then I filled him in on a doc who tried that with me back in 2000 (knees weren't nearly so bad then either) - put injections in each knee promising me I'd be pain-free in a few days. They went in ok; I drove home ok; but a few hours later when the anesthetic wore off suddenly I could not move! Both knees got hot, swollen, and very painful. So much so that I had to down 2 vicodin 30 minutes before painfully limping to the restroom. As a single parent with kids 9-15 years old... they had to care for me and themselves and anything requiring me to drive them had to rearranged for the next week! So - no - not doing injections again!
Bracing, PT, maybe a walker instead of canes: These I will work with. In my book, definitely better than anything that breaks skin! emoticon
Got the PT going already and working on the additional support and appliances.

This is only part of what I've been struggling with the last several days. Maybe next time I'll share more of the other stuff. It's late and I need rest. emoticon

May you all have a sparkling day!
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Member Comments About This Blog Post
    I'll say some prayers for you it's not fun to live in pain, I hope the PT does some good and I don't blame you for not wanting the replacements, I've heard such bad things. God Bless you! So , sorry to hear that you and your loved ones have had a tough time.... emoticon
    1819 days ago
    emoticon Hope the knee replacements get done soon. The brothers and sisters who have had that done in our congregation are doing so well and walking freely without any aids. Seems to be a highly successful op.
    1820 days ago
  • LUANN7
    I am sorry for your pain and my knees are bad also but I am too young for surgery so I suffer with the pain.I truly hope the PT helps you out so you get some relief. I will be praying for you!!!!have a great day!!! emoticon
    1820 days ago
    Andee, I am so sorry! I hope the PT helps and you can get the pain in control. That in itself is debilitating when it's like yours. emoticon emoticon
    1820 days ago
    Braces will help stabilize your knees and surgery should be the last thing that they try.
    1820 days ago
  • ZRIE014
    my prayers go out to you. you must stay positive.
    1820 days ago

    I'll be praying for you. emoticon
    1820 days ago
    Thank you for sharing your story. I can tell you've been through a lot but it sounds like you're handling it with grace and strength. I hope things get better soon. emoticon
    1820 days ago
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