In•val•id (adj)

/ SueBC

This (lengthy) post focuses on some health issues I’ve been having, not for sympathy, but perhaps because it may help me to work out my feelings on what is happening and to keep me moving forward toward better health. Maybe, too, some of you may have experiences that will give me insight and new ideas to implement.

Being independent and self-sufficient is such a big part of who I am. And yet, since mid-2018, I have experienced mobility issues off and on, and lately mostly on.

It used to be that if a man my age was watching me walk, it might give me a little spring in my step. This happened at the pool recently with a fellow I’d been talking to… but his comment was, “Oh, you are walking a little better today!” And the young lifeguard running over on another evening carrying a chair for me to sit on was very sweet but really sent the message that I am not hiding the pain very well. I come across as an invalid, and that makes me feel “invalid”.

The pain in my hip (and knees and muscles, to a lesser extent) is really impacting my life at this point. I can’t sleep through the night without waking in pain and I can’t even get into my car without lifting my (driving) leg into the vehicle with my hands! As I limp along, well-meaning people are asking what happened and, not only do I find it embarrassing “making a spectacle of myself” (as my mother might have said), but I haven’t had a good answer to give.

I suddenly realized, recently, that I was one of those people now who “live with chronic pain”! That realization, somehow, goes right to my self-image and I feel like I should really do better! (And I also feel like it can’t really be that bad and I should just stop complaining.) As I stand immobilized, leaning on a shopping cart in the entrance-way of a grocery store, I think that surely if I were just more diligent in my physio exercises that I again could be “a useful engine” (in the immortal words of Sir Topham Hatt to Thomas the Tank Engine).

The Backstory – Or How I Tried and Failed to Get a Diagnosis

In May of 2018, I fell while stepping off a curb onto uneven pavement. I sprained both ankles, the right one worse than the left, and also bashed up my left knee. Being someone who takes care of work and my kids’ needs before my own, I never went to physio until last year, naively trusting in my body’s ability to heal.

Back to 2018… Five months on from that fall, I developed a severe rash on my chest and abdomen that was so itchy, it made me want to rip my skin off. After some topical and oral medication, it was calmed down enough that I could feel normal on an over-the-counter antihistamine — that I am still taking to this day.

Referral waiting time being what it is, I was not able to see an allergist until early 2019. His conclusion: a rash due to an unspecified cause. (Not exactly helpful.) He did, however, note that the ANA levels in my blood were a bit high and referred me to a rheumatologist. Research tells me that ANA = antinuclear antibodies = antibodies that target the nucleus of a person’s own tissues. i.e. they are a potential (but nonconclusive) indicator of an autoimmune disorder (which could also manifest in a rash).

In May of 2019, I was finally able to see the rheumatologist. I had carefully listed all my various symptoms, but he said, “Yeah, none of these really go together as any kind of syndrome.” He also said that my ANA test was so borderline that he wasn’t sure why I was even sent to him and that, while there were other more in-depth tests available, he couldn’t recommend them in my case. At this point, I was limping a lot and particularly having trouble with pain in my right hip. He looked at my range of movement and where I was feeling pain and decided that I had problems with tightness in my IT band (no, not a bunch of computer guys who play instruments, but the iliotibial band formed of the connective tissues on the outer thigh and knee). He recommended that I go to physiotherapy.

Of course, me being me, and being deeply invested in both my job and getting my younger son through school, I couldn’t figure how to fit physio into my life. Finally ready in early 2020, I was stymied by the COVID shut-downs of personal services businesses. But in May of last year, I started seeing a really wonderful physio, who worked with me and gave me exercises (which I should really be more diligent about) to try to strengthen my back and thighs. He felt that I was distorting my gait through pain avoidance, all stemming back to the original fall. However, the last time I saw him, he said, “I know you saw a rheumatologist, but are you sure there isn’t hip joint involvement?”

Testing and a Bit of a Diagnosis

Bringing my story to last week. As you may know, my resolution this year was to stop putting myself last. I asked if my family doctor could order an X-ray of my hip and he also wanted to do my knees. He also ordered some blood tests and I asked if he could repeat the ANA test that I had had two years ago.

Following up after the tests, I fully expected to get the usual somewhat dismissive answer of nothing wrong and just do more physio. Not so!

I was not too surprised, I guess, to have a bit of arthritis in my knees at 60 (although I may also have a meniscus problem in the left one), but what really shocked me was the hips! My left hip is fine, but the right hip has severe arthritis, to the extent that I am eligible for hip replacement surgery! What a shock! (Although that would explain the issues I’ve been experiencing.) And I wonder if this would have been visible but treatable without surgery if the rheumatologist had ordered an X-ray a year and a half ago?

Next shock was that my blood test indicates that I am prediabetic. Time to get my diet and weight under control to try to reverse this. A bit of a wake-up call, telling me that my self-medicating emotional eating is really not doing me any favours. I’ve now started trying to make food choices on the low end of the glycemic index to ward off full-blown diabetes.

The final shock was the ANA test. My family doctor said, “Oh, your ANA is high!” I replied that the rheumatologist told me it was only borderline when I saw him. The family doctor said, “Well it’s not borderline now!” Apparently, normal is 1/80 and mine is 1/640. (Doing some research, I found that this indicates the greatest dilution of the blood at which antinuclear antibodies can still be detected.) A referral to a rheumatologist is in my future — he asked if I wanted to see the same one…. um, no. In the meantime, the family doctor sent me for a more specific test for rheumatoid arthritis (an autoimmune disorder) just in case, as that is a condition best treated as early as possible. Now, of course, that may not be what the ANA test means and there are also false ANA positives, but at least I feel that someone is finally taking all my various concerns seriously. (I should hear that result next week.)

To Be or Not To Be … Bionic

If you have read through all my TMI health post, do you have any thoughts on hip replacement surgery? Do you know anyone who’s had it in recent years (as the technology is constantly improving)? How was the recovery? (I hate the idea of being even more of an invalid during recovery, even if it is for long-term gain.)

I am, frankly, having some trouble reconciling myself to the idea that I need to do this (even though I think I must). Every time I have a good day, I say to my husband, “Maybe my hip will get better if I just work at it more,” but I think that once it gets to this point, logically that doesn’t make sense. But emotionally? Well, that’s a different matter altogether.

26 thoughts on “In•val•id (adj)”

  1. I’m so sorry to hear of your health issues, Sue, but I am glad that they’ve finally gotten concrete diagnosis on certain things and you’re not left wondering what is and what isn’t. I haven’t had a hip replacement but I’ve seen massage clients who’ve had them done as well as worked with patients before and after surgery when I worked in physical therapy.

    From my patients, I’ve noticed much better quality of life after hip replacement as the pain is not going to get better. Arthritis is degenerative and it’s just going to get worse while at the same time poses great risk for you unless it gets replaced. So if your doctor recommends hip replacement surgery, I would definitely consider it and make sure to attend the pre- and post-op physical therapy sessions so you’ll know what to expect as well as work with the limited range of motion of your hip joint after surgery – it’s nothing major, more like, don’t sit on a chair that’s too low because it puts your hip at an extreme angle and thus not good for the implant. Also they’ll prescribe stretches and exercise which are always good for everyone.

    It will probably take some time before you can reconcile many of the things that have been placed in front of you. But like someone told me one day as far as getting old and the things that go with it (pre-diabetes included because I’m there, too). “I used to be able to do this or that, but now I just do it this way…”

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    • Thanks, Liz. Yes, finding out what’s going on is really helpful and hopefully I can continue to get more answers. I was kind of in shock last week, but I’m going to talk to the doctor again this coming week and ask some questions.

      Thanks for the info. I really don’t know much yet about any of this. But it certainly seems like I will really have to apply myself to the physio for a successful outcome. And as you say, we can certainly adapt to changes as they come. Just takes a while to wrap our heads around them.

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  2. After falling on the playground a few times in the past four years, I also have had mobility issues and a lot of pain in my hips. I have a history of low back issues and sciatica but the hip pain was really dragging me down. I found this website and went through a lot of their blog post about hip pain and followed some of the exercise regimen‘s and found real relief. I tend to be a person who looks for cures other than surgery but I think it’s worth a look if you are really suffering. I think the capacity for our body to heal is amazing. Now, I’ll mix the pot by saying I have a friend I went to high school with and she had her hip replaced last year and says it’s the best thing she ever did for herself. She is only 52.

    https://www.uprighthealth.com/help

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    • Sorry to hear you have these issues too, but I’m glad you’ve found some exercises that help. I’ll take a look. I think I should also apply myself properly to the exercises the physio had given me to see what happens. Although I think that once the damage has occurred, you can’t really reverse it although you can strengthen the muscles around the joint and maybe reduce pain and increase mobility. Thanks for the story about your friend, too. Good to hear about good results in the event that I do need the surgery.

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  3. Trivia:

    -dad’s main personal care person has had both hips replaced and she’s really pleased with the results. Says it’s so much better than before. The advice I’ve gotten from everyone who’s had a hip or knee replacement has been: best results if you do the physio early and often. The surgery is so much less invasive now than it used to be.
    –glycemic index — the killer for me there is potatoes, but that will be easier once I stop eating almost every meal with dad. I’m surprised they have pasta on the green list, though. I may be addicted to de Cecco spaghetti. (And frankly: a bigger problem is just plain sugar. I drink too much sugar.)
    –hoping you DO NOT have Rheumatoid arthritis, but if you did, think of the many puns you would be able to make.

    Intermediate level:

    –I’m really sorry to hear that (a) you’ve been suffering this much and (b) that you had professionals who seemed not to take your problems seriously until they developed into this acute situation. Hip pain is the worst; having it be low level and pretty regular would be so exhausting, and I would see that as a disincentive to the other changes you want to make.

    To me, the decisive level:
    –keeping in mind that I may be overreading, because i also have the “putting others ahead of myself” issue operating in my life — that’s the thing that really has to change for all of the other stuff to improve. It’s the fundamental issue that drives everything else. And it’s not just an acute thing (“I will put myself first while I am recovering from hip surgery”) but it has to change into an everyday habit (“I will put myself first so I don’t have to have another surgery”) and to me, that is the hardest issue of all.

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    • Good to hear the positive results with hip surgery. If I do go that route, then I will have to somehow prioritize physio. (See, I slept through the night last night, so now I’m second guessing again.) my doctor says that the modern surgeries are much easier to recover from.

      I drink and eat too much sugar, as well as potatoes (mostly in chip form!). I was surprised about pasta too. My husband and I were joking that we could eat Kraft Dinner (boxed macaroni and cheese) as long as we cook it al dente lol.

      Oh I hadn’t thought of the puns! Good point. One RA I would love to have, but the other… not so much.

      Thanks for the sympathy. I don’t know why professionals didn’t take me seriously. I think, in part, that I tend to downplay any suffering (even that word seems like I shouldn’t embrace it) and present factually, and maybe that makes things seem less urgent. And/or my listing of symptoms accompanied by presenting as okay makes me seem neurotic. And doctors tend not to trust peoples’ own fillings about their bodies. I don’t know… but I’m kind of pissed off that the rheumatologist could have investigated further but didn’t.

      And yes, you’re right… it’s hard to lose weight and exercise more when you can’t even walk well. Thank goodness for the local pool and hot tub, which is really useful for stretching and helping mobility.

      You are correct that the big issue is not prioritizing myself. I learned it from my mother’s example. I am trying to change it, but is is extremely difficult, as you say, to change a long-standing way of operating in the world. Good luck to both of us on that score.

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      • … and doctors don’t take women’s pain seriously (study after study shows this). My own experience after becoming familiar with my parents’ medical situations is that they are often not helpful when the problem is complex (as opposed to acute).

        indeed, good luck to both of us. I’m cheering you on!

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        • Likewise! Yes, female gender and complexity add to it.

          I was thinking about saying that I learned it from my mother, but I think the work ethic and putting the work as the top priority I learned from my dad.

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          • Double whammy for the working woman. I’m always telling people that traditional gender roles wouldn’t have lasted so long if they didn’t have some practical use (division of labor). But nobody can bear both of those burdens imo.

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  5. I’m so sorry you have to deal with this pain all the time and that your healthcare provider has not taken your problems seriously enough! I know nothing about hip replacements other than that a colleague had one years ago and it had been positive for her, but I can’t remember the details.
    Yes, tough decisions for you but please do what is best and don’t have your health issues be anything other than a priority! Operations are scary things and recovery can take a long time but if that is what is needed, then that is what should be done. Others will just have to learn to deal without you being able to give your 100% for a while. Much easier said than done, I know, so please take care. (((Hugs)))

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    • Funny, the last few days I have only a bit of pain. I don’t understand why it’s up and down. I’m going to take my time deciding and see what else is possible. Thanks for the support and the hugs.

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  6. I am sorry. Take care of yourself now you can.
    The total hip replacement is a much more frequent surgical operation than one might think and remains among the most reliable in the field of orthopedics. However, each prosthesis is not final, whether partial or total, and will be subject to one or more replacements depending on the age.
    Anecdotes: you will have to build up your red blood cell stock because the operation makes you bleed (pre-doping with EPO or post-diet rich in iron, red meat) to learn to stand on a chair and no longer climb the barriers.

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    • This is a good point and it reminded me of something — a former colleague had an older relative who’d had a hip replacement in her 60s — when she was in her early 90s it was worn out and needed to be replaced, but she was no longer physically robust enough to have the substitution surgery. So she remained bedridden at the end of her life. (OTOH she might have been bedridden long before that without the first surgery, so.) But it would seem worthwhile to discuss this question with the surgeon if you go in that direction.

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      • I asked my family doctor about that and he said that subsequent replacements, if necessary, are much easier nowadays as they put in a removable plate, so somehow less invasive I guess. But if I go that route, I will definitely discuss with the surgeon, as well.

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  7. Degenerative chronic diseases such as rheumatoid arthritis are becoming less disabling thanks to a whole arsenal of new treatments.
    Fun fact: a retired university professor liked to be called robocop. Only her ankles had not gone through the scalpels. Always smiling before and after operations, she fascinated me. Her hands, after finger surgery, reminded me of the stay cables of a suspension bridge.

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  8. Pingback: Well At Least It’s Not… | I'm Feeling This

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