Confession: My Knees.

posted in: Sicky 46
Go patella on the mountain. (Not my knee.) Image: Wikipedia.
Go patella on the mountain. (Not my knee.) Image: Wikipedia.

 

I talk to my incredible mom frequently, but she does learn certain things about me via this blog. After all, I blog about five times a week; Mom and I talk once a week, on average, with texts and emails in there as needed. I got to spend quality time with her last weekend in Manhattan — and took a pretty terrific selfie with her and legendary quilters Paula Nadelstern and Mark Lipinski which can be found on my Instagram page right here —  and we had dinner and saw Rebecca Fons in a show at Second City in Chicago on Monday, but I never got around to telling her that I have some bad news. Sorry, Mom. Knee-brace yourself.

My knees are in trouble. It’s both of them, and it’s serious.

Admitting this is a big step. Admitting you have a problem is the first step in dealing with the problem and I have not dealt with The Knee Thing for… I have put my head in the sand about my knees for probably two years. But I am making myself accountable tonight. I have to see a doctor. It is getting worse and worse.

Look, when you have Ulcerative Colitis and then you have organs taken out because of Ulcerative Colitis and then you weather infections and things, those events don’t happen in a vacuum. My GI doctor does bone density scans (they’re not fabulous) and we do blood work (hello, iron infusions that cost $750 each) because while no one is “normal,” some people are less normal than others. At least some people have less bone density and iron than others and have absorption issues because of high-maintenance or non-existant intestinal walls.

The constant throb of knee pain that I have may or may not be related to my illness. It could be that I have, along with my other fun body portfolio, plain old “bad knees.” But I’m not overweight, I’m not an athlete, and we don’t have “bad knees” in my family, so I’m inclined to think it’s got something to do with UC, not from an absorption issue but…

This is where the blogger who blogs about her personal life has a decision to make. Do I tell you why I think I have knee pain really? Or what is most certainly compounding it? How much information is too much? If it’s scary to tell you the truth, does that mean I should tell you or does it mean I shouldn’t? In this case, after staring at the computer screen for long minutes, I have decided to tell you the ugly truth out of empathy for other humans who might have the same issue or need to know they are not the only ones.

My knees are shot because of getting up and down off the toilet so much for nine years.

There you go. Sexy, right? So cool. So glamorous. How cute am I now? How together do I have it now? Are you impressed? Did my Facebook likes go up? It’s the truth, comrades, and there does come a point when the truth is the best thing because you’re just too tired for anything else. At my sickest, I went to the toilet 30 times a day. It hasn’t been that bad for a long time. But when I had an ostomy (three years total), I went a ton, just because I hated having anything in my bag. When I got sicker, I went a lot. And now, better but never normal, I go probably 10-12 times a day. When you don’t have a colon, that’s actually a pretty good number.

That’s a lot of up and down, you know? That’s a lot of knees.

When I realized this, when I heard horrible crunching, gritty sound of my knees without even putting my head near them — this started well over a year ago — I was getting up from using the commode. Have you ever laughed bitterly? I mean really bitterly? I have. I did that day. I thought, “My God. My knees are a casualty of this.”

But who wants to have bad knees in her thirties? Who wants to admit why? No one, and not me. I’d rather make quilts. I’d rather work on the book I’m writing. I’d rather make dinner for Mariano (he’s coming over in a little while!) and I’d rather be with you, talking about anything, anything other than this.

My life is so incredible. I love school. I love writing for Quilts, Inc. I love my friends and my family. I adore where I live. I’m embarrassed when I look around at all that I have, really. Knee surgery ain’t that bad. I just don’t know when I’ll do it. Maybe this summer.

Because it’s bad, Mom. They hurt all the time and they click and pop. And I’m really sad.

 

46 Responses

  1. Li
    | Reply

    I appreciate the information because I think it helps others relate because of your honesty. You really put yourself out there.

  2. Sandra Weimer
    | Reply

    The best thing I did before I had knee replacement was to have a handicap toilet put in. So helpful.

    • Deb
      | Reply

      This is why you share with us, so that someone can give you a great and simple tip that may help you until you decide on the surgery. Thanks for sharing your life, the great, the good and the eehhh.

    • Jay
      | Reply

      Our water district replaced our toilets with low- flow ADA-approved toilets, and now regular ones feel like I’m sitting on the floor. Get thee a new toilet!

    • Carol Burtz
      | Reply

      Same here! New knees, new toilet, new me! More fun quilting!

  3. Carla
    | Reply

    Saw you today on your show. I have multiple autoimmune disorders but I’m not disabled by them because I have great insurance that pays for meds at a rate about equal to my salary. I am your mom’s age. So, take care and be well.

  4. cheryl
    | Reply

    I have had an colostomy since 1977 due to ulcerative colitis. It almost killed me. I had a 13 0/0 chance of living through the surgery. I know how ugly that disease is. The steroids they give you could have some connection with the problems with your knees. I too am having one thing after another go bad as I get older. I am so proud of you. I never let hardly anything stop me from doing what I want. You don’t either. ( I do draw the line at a football game. I did learn to scuba dive!). Keep up the good work we love and admire you!

  5. Linda Gagnon
    | Reply

    You are such an inspiration to all of us! Don’t wait, just get those new knees. And a raised toilet seat! Life is too short to live in pain that can be corrected. God speed

  6. Sharon Scheidt
    | Reply

    I can relate, I have Crohns and 2 surgeries behind me. The last was almost a year ago. I was so sick this time that I started to loss my hair along with my weight. I have not much bowel left and am on the worse meds and b12 shots every month. I have so much joint pain the list goes on and on. It’s getting harder to sew with my hands hurting so much as I love to hand quilt. Anyway, hang in there. And happy Quilting! Sharon

  7. Cindy
    | Reply

    Sorry. I agree about the handicap toilet;it helps.

  8. Colleen
    | Reply

    I am old and when we had to replace our toilet we had a taller/higher one installed my husband and I have an easier time getting up and down. I do now have a difficult time when I use a toilet away from home as some are so short /lower so if there is a handicap stall I use it so I can get up as I think I might have to have someone help me up
    Good luck with your knees I am of an age where my friends have had hips and knees worked on one had her hip done a second time as she had to have her hip fixed when she was young .
    All my friends knees have worked out fine but it is not fun

  9. Barbara
    | Reply

    Kudos!! Don’t you feel better niw! You are lived!

  10. Dayna Williamson
    | Reply

    I agree that a handicap toilet is the first thing to do. I have been getting euflexa injections in my knees for quite a few years now. My Reumatologist asked me when I was going to think about having my knees replaced. I have been popping and cracking and locking up and in extreme pain for a long time. ( mine was from sports). I lost 2.5 inches in height and doctors asked how I was even standing after looking at my xrays. Me too. Just had first one done 2 weeks ago and plan on doing the other in the spring. I needed permission from my cardiologist as there are heart issues going on. You will need to address infection issues probably (we all do). Get one done at a time and if you work hard you will be walking around in no time at all. Prayers for you. (get a shower chair and bars on the wall near your toilet to aid in getting up. Sturdy wooden chair with arms for sitting in to make it easier to stand up. Use your arms when ever possible to assist.) We love you

  11. Joan Elkins
    | Reply

    I understand your pain, Crohn’s has negatively affected our family and I have rheumatoid arthritis, have the handicap toilet, house set up for wheelchair accessibility if/when necessary. You need support, wish Mom was closer, but the best you can do at this point is stay in touch, you both have important paths to follow in this life. I remember a former student telling our Senior High School class that often going to college was like banging your head against a brick wall. I did feel that a few times later in life. I also went to orientation for parents when my son went to college and we were told that we may get a phone call at 2 in the morning and your child is absolutely miserable, so you jump in the car to go to get them/help them and when you get there, they are happy and having a party in their dorm room. You will have highs and lows, especially because of what you are dealing with, remember to come out of the valley, it is only temporary. When I realized that I began to heal <3

  12. Janet
    | Reply

    I’m sending hugs, my friend. I understand – only too well. Last year, after putting it off for far too long, I had my left knee replaced. There was nothing in the joint but bone shards. Nothing. I can tell you it was the second best decision I ever made (the first is another topic entirely). As painful as it is now, and knowing that you will be spending time recovering, I can tell you that once you are past the first hurdle, you will feel like dancing again. Something I would bet you haven’t felt like doing in a while.

    Sending more hugs.

  13. Linda Shumway
    | Reply

    I was forced to put off bi-lateral hip surgery to replace my hips for 10 years. When it was over I was thrilled my hip pain was completely gone and I not only could walk pain free, but I could stand up straight instead of walking hunched over like a monkey. Living with constant pain can crush your life. Please fix the problem. Are you going to wait til you’re “old”? Oh, and talk to your Mother more.

  14. Terry
    | Reply

    Telling your story to others (strangers who read your blog) should in itself be “cleansing”. But I know it won’t be. I’m as old as your Mom and I too have bad knees – both of them. I don’t have your medical history, but in my youth I abused my knees and thought they would “heal themselves” (?) once I was less active – not true. It’s a hard decision – I’ll be keeping you I my sights and prayers. . . . .

  15. Deborah Norris Michalski
    | Reply

    ….and that is why I love you. and appreciate you soo much. Thank you for always keeping it real. I’m a big fan and especially loved your stage performance. Take care soldier.

  16. Linda Olausson
    | Reply

    Hugs for strength! I was so moved by your blogpost. It takes a big heart and a strong soul to share the hole trouth about being human. My thoughts were that sometimes our bodies, and their symptoms, overwhelms our being and start to define us. We survive by claiming our soul and the true essens of ourselve, our freedom of speech, our crestibity and our ability to express our loves.

    Thank you for your words, thank you for your spirit (which I only know from Youtube-clips) and thank you for all the inspiration you spread! I wish you strength.

    Hugs
    Linda from Sweden
    Quilter, teacher, mom, daughter and surviver

    • Linda Olausson
      | Reply

      Ment to write creativity 😉 not crestibility

  17. Fran
    | Reply

    My husband also deals with UC and has medically gone the route you haveand I’m the one with bad knees along with a left ankle fusion. We had two of our commodes changed over to the extra high and it was the best thing we did for ourselves! Even our friends head for the high commodes! So much easier to use!

  18. Mary-Kay
    | Reply

    Sorry to hear about you knee issues. As if you don’t have enough problems without another one. I have to tell you, getting knee replacements might be the best thing you could do. I have a friend who had to get knee replacements when she was in her teens, don’t know the reason why, but she is now in her fifties and delivers mail. Maybe she takes a lot of pain meds but she doesn’t limp and seems to have no problems what so ever. something to think about. Me, the doctor said I was too young to get a knee replacement, I was also a letter carrier, and I was in my early fifties. I guess it just depends on the doctor. I retired instead. Much more fun!

  19. Susan Skuda
    | Reply

    Thanks for sharing, Mary. What about all those past-middle-age women who have to pee five thousand times, all day and night? Wonder how many knee casualties result? Perhaps they should sell knee braces near the bladder control products.. I’m serious!
    STAY STONG and tell Mariano “Hey!” from all his (and your!) fans!!! Love ya, girl!

  20. Becky
    | Reply

    Bless you dear girl, I have the popping, cracking too….getting up and down from a bus seat for 17 years as an aide with pre school. No doubt it hurts…love your honesty! Know you’re not alone, and therapy sometimes helps a lot…

  21. Dulce Salvi
    | Reply

    Oi, Mary. Adoro seus vídeos e ensinamentos. Muito bom você compartilhar esse lado tão pessoal! E com certeza muitos, como eu, entendemos …Desejo que você continue firme e forte para seguir em frente, enfrentando os tratamentos necessários. Coragem , força…Continuaremos seguindo você, pessoa maravilhosa. Abraços.

  22. Tracey
    | Reply

    I am 53, and started having knee trouble last year after tearing my meniscus while deadlifting. I “toughed” it out for a year before deciding that I was too young to feel this old. In July I had surgery, followed by physical therapy, and I feel better than I have in a long time! Don’t wait too long Mary, you will be amazed at how much better life will be.

  23. Anita Brayton
    | Reply

    All I can say is “thanks”. You are the only person I know with UC and brave enough to talk about it. You put a real face to a disease that no one likes to discuss, even with a doctor. xoxoxox

  24. Jeanie
    | Reply

    Mary, I am so glad you have this blog and can see how many people can relate and care about you. My heart hurts for you. In 2008 I had a sigmoid colectomy because of diverticulitis. My sister had her SC several years ago. She had both knees replaced in her 30’s & 40’s. I broke the bottom of my L tibia when I rolled my ankle & the top of my R tibia several years later when I squatted down at the farmer’s market to pick up a turnip off the floor. Brittle bones. I can relate to being on the toilet 30X a day, so can my sister. Colon problems & living on the commode go together. (there are 8 people in our family, Aunts, Uncles & Cousins, with Diverticulitis, 4 of us have had the sigmoid colectomy surgery)my knees hurt whenever I stand up. I believe that it has something to do with how nutrients are absorbed in our gut that causes the problem. Also, it really does make a difference if we have strong muscles to support our joints.
    I will sound like a broken record, if you don’t have one already, please, have every toilet in your house changed to a tall toilet.
    Prayers for you, dear one, prayers for your sadness, prayers for your spirit, love & peace.

  25. Aileen
    | Reply

    I was probably your age when I started having knee issues. I didn’t have time to be bothered (you know how life goes on) until a friend who was my age (I’m 52) had total knee replacement surgery on both knees at the same time last fall. She manages a convenience store and was back to work full-time 11 weeks after surgery. When I saw her spectacular results, I wanted the same. I had both my knees done in March and I’m feeling akin to Super Woman now, six months later. Surgery has been a life changer, for the better!!!

  26. Mabel Brooks
    | Reply

    Mary- You were great last week at QTM! You cover up pain well because it didn’t show.
    Seriously, get your knees taken care of because you are too amazing to let this hold you back.
    You can write your book while recovering!

  27. J M
    | Reply

    Taller toilet, also put in a grab bar in front of it and to the sides – think of one of those girls on parallel bars – you want to be able to grab from anywhere to take the weight/stress off your knees as you stand/sit. Also, try ice packs – ice down your knees every now and again, especially on a bad day. Helps with inflammation and will make the knees more functional. And as far as your thirties, well, U.C. or not, here’s the bummer, it’s when things start to fall apart and you catch yourself just a touch slower – unless of course, you’re a professional athlete and get paid BIGBUCKS to train and work out and hold this off but even BigBucks and training only go so far – think of Michael Jordan playing for the Hornets (pretty sure it was the Hornets after the Bulls). Things start to slow. That’s when my shoulder bursitis started to really get bad at times and the gout first hit. So, all that said, way taller toilet, a good plumber can even give a ‘lift’ to a tall one and make it taller. And don’t forget the grab bars. Ice your knees. Take the best care you can , Fons. And I think if you were like a hardcore, tough biker chick you’d probably have a nickname like ‘Foxy’ Fons – or ‘nary the Mary – (what that means I’m not too sure but it’s got kind of a beat to it) , me, personally, way too clutzy to ever get on a motorcycle – wrecked one in a back yard when i was a kid – but if i was in the Chicago Mafia back in the thirties – I think they’d call me Jimmy Two Shoes – because I wear two shoes. They always seem to match the shoes I wear although they don’t always stay tied. I’m in my friggin’ fifties and still haven’t got the shoe tying down and I’m thinking velcro next go ’round. Anyhow, I like long walks on the beach, pina coladas and Barry Manilow on 8 track… and I want to make America Great Again! Oh the horror, Fons, the horror…. – fat, bald man over and out.

    • J M
      | Reply

      One more thing Fons – if you do get a tall toilet sit yourself down on an office chair and adjust until you find your feet flat on the floor and your lap and lower legs are at a ninety degree angle, this might make it a better fit and easier to get up. Also, try different heights, angles, etc – I’ve had to raise my couch because it was too low (I’m not towering tall – basketball small so to speak – but tall enough to have furniture feel too low) anyhow, get yourself a desk chair to raise and lower until you find the height best for your knees. Me, personally, I like sitting a little higher than my knees. Take care of yourself and I’m about to go thread my new sewing machine. Sounds silly, but I’m gonna make my mom a superhero quilt for Christmas. God bless, hang tough Mary. And now, I’ve decided to walk down to the store and get some peanuts and a diet coke – I got so damned fat. Blah.

  28. J M
    | Reply

    One more thing – have you read ‘On Writing’ by Stephen King? That’s one helluva book and any writer needs to read it. Take care, Fon. In my prayers.

  29. Ann Bailey
    | Reply

    Yep, I agree…go get a raised toilet seat immediately….call up a medical supply store there and they’ll deliver it to you tomorrow, probably. Then get someone to install a raised toilet in your bathroom. God Bless you and keep the faith….

  30. Nancy McFall
    | Reply

    So sorry about your latest trial. I agree about the taller commode, very helpful for painful knees. I would also suggest you get one that is straight sided. Much easier to clean than the ones with all the “nooks and crannies” in the back.
    Hope your good days are great and your bad days are middlin.

  31. Chris K.
    | Reply

    I don’t think anyone else has said this. If you get a toilet seat with handles (rails?) on each side, you can lift yourself with your arms and put less weight on your knees.

    • Judy
      | Reply

      Good plan. Use upper body strength.

  32. Tracy
    | Reply

    You are so brave! I love your beautiful soul that comes through with all you do. Stay positive, sending love, hugs, and prayers.

  33. Deb KimballS H5
    | Reply

    All the advice here about good toilets, grab bars and new knees. Is great. I love the honesty you have, and your bravery in the face of knee replacement. But, you gotta fix the knees so you can carry on. We’re behind you 100%.

  34. Diane
    | Reply

    I had one new replaced when I was 50 and another at 51. Best thing I ever did. You can do it! Maybe it will just be a repair and no replacement needed – good luck!!

  35. Dorothy Beary
    | Reply

    Mary, I am a quilter and tape your shows all the time, and enjoy them so much. My prayers for you. You have been through so much. What a strong person you are . God bless you .

  36. Lori walter
    | Reply

    Mary, after looking at all of these responses and realizing that so many have a lot in common with your pain, I don’t feel qualified to respond but, having lived a good portion of my life I know I can tell you that finding a solution to your pain is not something to be hesitant about. Life is emotionally hard enough. Don’t make it physically hard if you can prevent it.
    Also, please don’t be apologetic to anyone about this. Those that can’t appreciate and accept physical limitations are not someone you want in your life anyway. We will pretty much all end our lives with some physical limitations of one kind or another. If we discount each other at an early age because of that, we will look back later and realize what an ass we were !!

  37. […] it’s time for another confession. I do have a goofy app thing that I love. I love […]

    • Pam Williams
      | Reply

      Bless your heart But I mean it. Usually southern girls say that as a way of receiving dispensation for something mean they have said about another person. I hope these dark painful days will be replaced by
      Pain free, healing and blessings of
      Happiness and better health very
      Soon. You know your team is rooting
      For you.

      Bte I have ibs. It makes me late for work frequent. I have a torn up ankle that gives out when I exercise. I am mad at it right now. I think we are all closer friends now that we know each other a little better. You are the best!!! Pam williams w

  38. […] had my knee appointment yesterday. The good news is that I don’t have to have my knees replaced this summer, which […]

  39. Dean Cravens
    | Reply

    Mary, there are things you can try like Knee Adjustment Device (KAD) to relieve pain and stiffness in the knee:
    My doctor told me the burning pain on the outside of my knee accompanied with the bone on bone pinching pain on the inside of my knee signaled the end of my knee. I spent a couple years doing anything I could to my knee to get rid of the pain and I finally did. I found a way to apply pressure to the knee that would alleviate the burning pain on the outside of the knee and open up the inside of the knee to relieve the bone on bone pinching. The burning pain on the outside of the knee was gone, inflammation and osteoarthritis receded, the swelling disappeared, and to my amazement all my pain was all gone. I am now running again and working out at a high level every day. I would love to talk with you about the Knee Adjustment Device (KAD) I have built, the process I went through, and explain to you how the device works. Please visit my website (www.simp-stainable.com) to see information about the KAD and my contact information I am available anytime.
    Dean Cravens
    http://www.simp-stainable.com

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