Disability and Determination is a weekly newsletter about my experience living with a rare disability…with a little bit of meditation, pop culture, and other random things thrown in.
I just learned a new thing as a midlife woman that I never thought possible...you can lose bone density in YOUR FACE. I always thought of hips, knees, ankles, but apparently because I've fallen so many times over the last 15 years during seizures, I've now lost so much bone in my upper chin, I'm going to lose my two front teeth and require implants... $30K. It's bananas. I'm like exercise to prevent bone loss??? How on earth do you do lift weights with your face? 😂 Hope you are on the mend and feeling better!
Dammit, I am sooo sorry for the very delayed response here. I can't believe you can lose bone density in your face! I guess if there's bone somewhere it can lose density but I can't even imagine how much of a pain that must be (literally and figuratively) and $30K for implants?? Gees. Someone needs to get on figuring out something that can do weight baring exercise on your face so you don't have to deal with all this 😂 My ankle seems to be improving at least but with the full on osteoporosis diagnosis, I think it's safe to safe I'm still mentally on the mend 🥴
I'm still behind on my reading, but I'm slowly catching up (370 emails down from 400-something). You may be in a better place by now, but have you tried doing simple stretching exercises? I'm always seeing exercise app ads on IG. Some include chair exercises for us folks that can't handle something as jarring to our bones like, say, zumba. But maybe stretching will help?
Stretching unfortunately won’t help the osteoporosis. I have to do weight bearing exercise which is tough since exercise can make me fall and potentially break a bone. I do stretch daily though. I’m going on medicine and I’m doing PT once a week and using all their equipment to try get exercise. I used to do chair exercises once or twice a week I just haven’t had the time or the energy. As it turns out this whole thing could be related to my disability too so then there’s really not much I can do about it. Going to try meet with a specialist to see. 400 emails too…wowsa!
Thanks for sharing your experience. I was recently diagnosed with severe osteoporosis despite being premenopausal, and I don't have traditional risk factors like long-term steroid usage. I believe my osteoporosis is secondary to my MCAS, but I haven't been able to find a doctor willing to treat me despite persistently elevated histamine levels.
I’m so sorry you’re going through this too. I’m in the same boat. No other traditional risk factors other than not being able to get a lot of “weight bearing” exercise. Even more frustrating when you’re dealing with this and then you can’t find a doctor to treat you too. Sending hugs and thank you for reading!
I'm sorry to hear about your pain too. I'm relieved that I'm not the only young person dealing with this but also saddened that we're essentially stranded medically speaking.
Hang in there, darling! If this was the way you had to learn about your bones, then that's the win, irritating and disappointing as that may be. You'll get the PT you need and will be the stronger for it (in all the ways). xo
I’m definitely glad I know. I found out today it’s full blown osteoporosis too 🥴 I’m just very much in a “I’m tired of this sh*t” place today. Not sure how many more times I have it in me to pick myself up and dust myself off (literally and figuratively apparently).
Oh, no! I'm so sorry, Jackie! Are there good treatments for that? I've heard of shots and pills. I hope you get what you need...especially the PT. 💗 xo
A healthy bone specialist is supposed to contact me about a treatment plan. Other than the usual exercise I can take calcium supplements and from what I read there’s meds I can take so we’ll see. I always joked I felt like I was 80…I guess I didn’t realize how literal that actually was 😂 I had a good cry and did some meditating and I feel a little less like a ball of hopeless mush now.
I really am sorry, Jackie. That’s a stressful diagnosis. I understand that there can be some good results with the treatments. I hope you get good stuff out of this. Good cries help. I love that you meditate (still not there). Just remember that you’re resilient. That doesn’t mean being resilient doesn’t get tiresome. And my fingers are still crossed on that pup. xo
They really are! I’m sorry you’ve had some bad falls too. Very much the last thing you need when you’re already dealing with other chronic health issues.
I feel this so strongly. Exercise is good for us and such a huge part of staying healthy and building strength, but when we have chronic pain, exercise is also painful and causes more inflammation and stiffness. Often for days or a full week after PT or exercise, I’m exhausted, depleted, inflamed. It becomes hard to want to do it again. Because saving spoons is such a real thing too.
Thank you so much for this incredibly validating comment. It's so hard, striking the balance between exercise and saving spoons as you so perfectly put it. Appreciate you reading and commenting so much.
I just learned a new thing as a midlife woman that I never thought possible...you can lose bone density in YOUR FACE. I always thought of hips, knees, ankles, but apparently because I've fallen so many times over the last 15 years during seizures, I've now lost so much bone in my upper chin, I'm going to lose my two front teeth and require implants... $30K. It's bananas. I'm like exercise to prevent bone loss??? How on earth do you do lift weights with your face? 😂 Hope you are on the mend and feeling better!
Dammit, I am sooo sorry for the very delayed response here. I can't believe you can lose bone density in your face! I guess if there's bone somewhere it can lose density but I can't even imagine how much of a pain that must be (literally and figuratively) and $30K for implants?? Gees. Someone needs to get on figuring out something that can do weight baring exercise on your face so you don't have to deal with all this 😂 My ankle seems to be improving at least but with the full on osteoporosis diagnosis, I think it's safe to safe I'm still mentally on the mend 🥴
I'm still behind on my reading, but I'm slowly catching up (370 emails down from 400-something). You may be in a better place by now, but have you tried doing simple stretching exercises? I'm always seeing exercise app ads on IG. Some include chair exercises for us folks that can't handle something as jarring to our bones like, say, zumba. But maybe stretching will help?
Stretching unfortunately won’t help the osteoporosis. I have to do weight bearing exercise which is tough since exercise can make me fall and potentially break a bone. I do stretch daily though. I’m going on medicine and I’m doing PT once a week and using all their equipment to try get exercise. I used to do chair exercises once or twice a week I just haven’t had the time or the energy. As it turns out this whole thing could be related to my disability too so then there’s really not much I can do about it. Going to try meet with a specialist to see. 400 emails too…wowsa!
Oy! Gotcha. I can see where the vicious cycle comes into play. #Bootothehoo
Thanks for sharing your experience. I was recently diagnosed with severe osteoporosis despite being premenopausal, and I don't have traditional risk factors like long-term steroid usage. I believe my osteoporosis is secondary to my MCAS, but I haven't been able to find a doctor willing to treat me despite persistently elevated histamine levels.
I’m so sorry you’re going through this too. I’m in the same boat. No other traditional risk factors other than not being able to get a lot of “weight bearing” exercise. Even more frustrating when you’re dealing with this and then you can’t find a doctor to treat you too. Sending hugs and thank you for reading!
I'm sorry to hear about your pain too. I'm relieved that I'm not the only young person dealing with this but also saddened that we're essentially stranded medically speaking.
Yes for sure. I wish we were both young people dealing with this and able to get the medical care and help we need. It really shouldn't be this hard.
Hang in there, darling! If this was the way you had to learn about your bones, then that's the win, irritating and disappointing as that may be. You'll get the PT you need and will be the stronger for it (in all the ways). xo
I’m definitely glad I know. I found out today it’s full blown osteoporosis too 🥴 I’m just very much in a “I’m tired of this sh*t” place today. Not sure how many more times I have it in me to pick myself up and dust myself off (literally and figuratively apparently).
Oh, no! I'm so sorry, Jackie! Are there good treatments for that? I've heard of shots and pills. I hope you get what you need...especially the PT. 💗 xo
A healthy bone specialist is supposed to contact me about a treatment plan. Other than the usual exercise I can take calcium supplements and from what I read there’s meds I can take so we’ll see. I always joked I felt like I was 80…I guess I didn’t realize how literal that actually was 😂 I had a good cry and did some meditating and I feel a little less like a ball of hopeless mush now.
I really am sorry, Jackie. That’s a stressful diagnosis. I understand that there can be some good results with the treatments. I hope you get good stuff out of this. Good cries help. I love that you meditate (still not there). Just remember that you’re resilient. That doesn’t mean being resilient doesn’t get tiresome. And my fingers are still crossed on that pup. xo
That sounds like such a frustrating loop, Jackie. I have had a few bad falls over the last few years and it’s terrifying every time.
They really are! I’m sorry you’ve had some bad falls too. Very much the last thing you need when you’re already dealing with other chronic health issues.
I feel this so strongly. Exercise is good for us and such a huge part of staying healthy and building strength, but when we have chronic pain, exercise is also painful and causes more inflammation and stiffness. Often for days or a full week after PT or exercise, I’m exhausted, depleted, inflamed. It becomes hard to want to do it again. Because saving spoons is such a real thing too.
Thank you so much for this incredibly validating comment. It's so hard, striking the balance between exercise and saving spoons as you so perfectly put it. Appreciate you reading and commenting so much.