"the nicest and the sweetest days are not those on which anything very splendid or wonderful or exciting happens, but just those that bring simple pleasure, following one another softly, like pearls slipping off a string."
Lucy Maud Montgomery

Tuesday, April 26, 2011

Life in the fast lane...

...life with a prosthesis is always a challenge, or is that life IN a prosthesis?  On a good day it is bearable, on a bad day it is it's own particular type of hell.  And in between?  Uncomfortable, sweaty, on-off adjustments, funny, compromising, embarrassing, humiliating, unforgiving, hysterical, great story fodder, teary, glamorous (?), and always, always humbling.

And yet, I am truly grateful.

I have a pin and clutch system.  In other words, I "roll" a sleeve onto my little limb.  At the end of this sleeve is a pin, about 2inches long.  Then I step into my prosthesis and the pin locks down holding me all together.  Well, mostly.  The clutch is the section of the 'leg' that holds onto the pin and allows me to lock and go or unlock and remove.  I tend to blow out the clutch rather often.  I don't really know why but I'm sure it has something to do with the frustrating nature of the on and off several times a day to adjust my limb.    Then there is the 'foot' and I have one that is made for an athletic sort of person. 

One of the strangest things I remember about losing the leg was being given a catalog of feet!  You can order all sorts of prosthetic feet depending on your needs, even high heeled ones!  But this is the one and only kind I've had since they are not reasonably priced and insurance frowns on high heeled prosthetics.  I guess if I was Heather Mills famous that would be a different story.

I don't have a cover over my 'leg' as it add several more pounds to haul around and as it is the prosthetic weighs about fifteen pounds on it's own.  I''m not sure how much my real leg would have weighed but it was attached to me and didn't feel like it was something I had to think about.  It is nice to go to the doctor and subtract fifteen pounds from my weight though!!  Yeah, always a silver lining.

Any kind of volume change will change the way of the fit.  Volume changes being weight changes up or down, fluid retention, dehydration, summer, winter, spring and fall, the sunshine, the universe, the tides, the dog....and just about anything else you can imagine.   These changes are usually rectified with the usage of socks that go over the liner and the leg.    Often times there are issues with pressure with no obvious reason why.  Then pressure sores will develop and depending on the area of the limb it could be quite uncomfortable.

I have had a pressure sore on my limb, just below my knee, for several weeks.  Yesterday I started on my third round of antibiotics to be sure that no infection sets in.  Yay me and antibiotics!  I also blew out my clutch again.  So, now we are in the process of getting a new 'leg.'   We, ha...
This is a lengthy process for me and takes several weeks, trips downtown for fittings, and alot of frustration for my prosthetist.  I swear, I am like the Princess and the Pea with my fittings! 

I love my prosthetist.  I used to work with his wife and he and I were friends long before I needed his professional services.  He even got special permission from the hospital board to be present in the operating room with me.  He's come to my house, parking lot, phone booth, where ever I might be, to fix something that has come undone.  On my first 'leg' he laminated some beautiful fabric onto it, and it was the best fitting, cutest leg you've ever seen!  I could walk, run, and go to the gym with that thing.  Unfortunately, it cracked during a tune-up.  I've not had a well fitting leg since...;(

So this is where I am, where I've been...back and forth to see the foot man, back and forth to see the leg man, back and forth to see the PCP and just plain back and forth.  Oh yeah, don't forget the eye doc, the 'c' doc, my children and grand-girl.  Phew...no wonder I'm so tired.

How have you been?


  1. Jo-Jo, I am sitting here at a great loss for words. I didn't know that you have a prosthetic leg. I really admire your tenacity in dealing with all of your health issues so matter-of-factly and so positively. I would suppose that sharing your 'prosthetic problems' may be difficult for you; but I was certainly enlightened by your post. I had no idea that there were so many miserable 'side effects' to wearing prosthetics. I will stop complaining about my 'natural' limbs aching from time to time and have more empathy for those who have lost limbs starting today! Thank you so much. You are inspiring.

  2. awww...honey. I'm sorry for your frustration- Ward doesn't have a prosthetic, but it's been a struggle to find a patch that covers where his eye used to be and that doesn't press down on the graft.

    The only company we've found does patches that slip over eyeglasses for children with Lazy Eye, so Ward's been wearing patches with either dragons or geckos.

    Luckily he thinks both are cool :)

    Hugs to you, gal- we're always in your corner.

  3. You and your wonderful attitude need to write a book for the rest of us. Wow.

  4. My Dad struggles with his prosthetic leg all the time. Temp seems to be the biggest issue - his stump swells or shrinks on a daily basis.

    His leg is electronic. He plugs it in each night to charge. His ankle bends on it's own - it senses changes in the surface he's walking on. It's pretty amazing. It even knows when he's walking up stairs.

    Of course, when he forgets to charge it, he's screwed.

  5. Now I feel thankful for my vericose veins! My kids always called them very gross veins ....... My son called the other day to ask me to make a costume for Maya's first grade play. Jada was in the background, saying something about Gramma Kathy's legs being fat. When my son chastised her, she said, "No, it's okay, Gramma told me they were fat."

    I am sorry for all your troubles with your prosthetic leg, but you make me thankful for my fat legs!!

  6. jojo, I know one thing for certain after reading your post...you will be FINE.

    We all have challenges, to be sure, but those who can confront their challenges with humor and common sense (as you have) are the ones who surmount those challenges and triumph over them.

    You remind me of my son who lost his entire colon to Crohn's Disease a few years back. He watched a cadre of surgeons and doctors walk into his hospital room one day and said, "If you all come in here, you'd better be prepared to talk 'poop' to me."

    [He's owner of his own CrossFit training facility now, teaching others to attain the highest level of fitness they can attain. Most of his clients have no clue what he's been through.]

    Keep smiling and keep working at solutions to your issues. It would, however, help if you stopped blowing out the clutch!

    Smiles and warm hugs to you, jojo,

  7. I hope they get it right this time so your next one will fit as well as your first. Don't know why they can't get it right.

    God Bless, Jo-jo. ♥

  8. What a powerful post Jojo. I never knew what an effort wearing a prosthesis was. I am so sorry that you have had this challenge but I am so impressed with your attitude. You are an inspiration.

  9. You're shopping for a leg. I'm shopping for boobs. Oh the sweet misery of it all!

    Seriously, I get this one... more than you know. Prayers, sister.


  10. Oh, sweet JoJo that is a lot of back and forth. I hope the new leg will be the best one ever, it will give you no problems and you will be able to do all you want to do. Praying that will be the case sweet friend. Hugs

  11. Jojo, thanks for your kind words on my post today.
    You cease to amaze me. I was not aware of your prosthetic leg till now. It must present a lot of challenges from the sound of things. What attracted me to your blog, Jojo, in the first place was your determination to take on 'life' as it was thrown at you. You have given me inspiration over the past year and helped me 'take on' things with which I have been presented. Thanks for this.

  12. Oh my lord, and you offer me comfort. I need to SHUT my mouth! You are one brave, sweet spirited woman. Sounds like you need a new leg. Sure makes me think about complaining about ANYTHING.
    I'm not too tired and actually pretty encouraged so I'm going to go relax and say some prayers for you my sweet friend.

  13. Well, Jojo, I had absolutely no idea. You continually amaze me, woman! If I had one fourth your strength and courage....

    I agree with Lauren. Maybe you should get to writing that book and then go on a book tour with your new and perfect fitting leg!

    This wonderful post just made me feel better and I was feeling kind of yucky. Stupid me.

  14. Keep that amazing attitude JoJo! It will keep you sane and take you far. My husband is an amputee so some of your frustrations I see and hear from him . But he, like you does not let it rule his life. He like you are an inspriation to the rest of us.

  15. JoJo, thank you. Thank you for the matter of fact way you tackle all things that come your way. I, too, didn't realize all the different factors you have to deal with using a prosthesis. I think it is wonderful that you just put out here some of the factors you have to deal with on a daily, sometimes hourly, basis and your ability to take it in stride (as it were) and share with us. Mostly, I thank you for being you.


  16. Jojo, I know from a friend, who's husband had nothing but problems with his prosthetic leg, that it can be a huge pain...(all around).
    It's a shame with all you go through to be fitted with a new leg, that it doesn't fit like a kid glove! I wish you all the best with your new leg and I really HOPE it's even better than your first one! Big hugs, Debbie @ Cottage Hann~Me~Downs

  17. I had no idea either that a prosthetic limb came with so many hassles and problems! I have learnt much from this post of yours and I thank you for that and for being generous enough to share. I do quite like that you can "blow out a clutch" though and see the humour in it xx

  18. Jo-Jo, you are an inspiration. I didn't know either about your prosthetic leg. With your attitude, we could take on anything! Thanks for sharing your soul...

  19. I have been aware through various things you have written that you have lost a limb and use a prosthesis...but I had not seen this post before. What a service to share both the details of how it is meant to work and the difficult spectrum of feelings that are ever available as you live with the loss and renew your daily willingness to adapt and overcome. I find that it is easy to second guess myself as to whether my own attitude makes the grade...I am much more likely to notice when I am under the influence of a less than stellar attitude about my challenges than be aware of the grace I have been given to press on despite the parts that don't function as they were originally intended . Yep... Anyway...I hear a healthy balance in your sharing...it's real and it's honest and it doesn't puddle and give up and as a consequence the spirit of your life shines through. Thank you.


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