Measuring Progress

Posted by thumperguy @thumperguy, Aug 19, 2020

I use time between acute flare-ups requiring antibiotics to resolve as a handy “gross” measure. However I’m aware that many people active on this forum are copping with greater pathology than my “mild” case and likely have more sophisticated ways to assess status

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Geez Migzii, I can only guess what a hobbling ordeal you’ve been through. Fill me (us) in. How have you coped? Don

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Sue, I’m impressed with how positive and helpful you are in spite of dealing with pain issues and challenges of living with mac. To repeat thumperguy’s post, you are inspiring.

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Thanks for the encouragement everyone. I don't feel inspiring – just stubborn. The women in my family occupy their bodies for an average of about 90 years, so I have to keep after mine so I can be an active occupant.
Sue

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@sueinmn

Thanks for the encouragement everyone. I don't feel inspiring – just stubborn. The women in my family occupy their bodies for an average of about 90 years, so I have to keep after mine so I can be an active occupant.
Sue

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👍👍👍👍👍

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@thumperguy

Geez Migzii, I can only guess what a hobbling ordeal you’ve been through. Fill me (us) in. How have you coped? Don

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Oh, it’s been a long and drawn out ordeal….fractured my foot 1/19….8 months later it healed. However, ongoing pain gave way to cortisone shots (wow! Those hurt!)……given diagnosis of severe arthritis with little chance of being able to handle surgery (Mayo orthopedic surgeon). I got another opinion in 6/2020 and this surgeon (with outstanding reputation from Twin City Orthopedics) said my foot could manage the fusion surgery and eventually my foot would not tolerate anymore shots…..which I hated anyway. Thus, I got the surgery two weeks later and ever since I have been working my way back! I can now walk a slow, but steady mile in my own tennis shoes, on an even surface without an orthodic and with less pain than before the surgery. Twice a week PT therapy for the next 8 weeks and hopefully, my foot will allow me to do things I haven’t been able to do for SO long! Thx for asking and caring❤️ Take care!

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@thumperguy

Geez Migzii, I can only guess what a hobbling ordeal you’ve been through. Fill me (us) in. How have you coped? Don

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Oh, I guess I missed the part about coping….taking one day at a time; bad days will pass; nothing can break my spirit if I keep myself believing that; humor; and trying to stay detached from too much expectation….what will be will be…..Family, friends, and reflection…..

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Migzii, if a “never say die” positive attitude is all it’s reputed to be I’d say you’re home free.

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@migizii

Oh, it’s been a long and drawn out ordeal….fractured my foot 1/19….8 months later it healed. However, ongoing pain gave way to cortisone shots (wow! Those hurt!)……given diagnosis of severe arthritis with little chance of being able to handle surgery (Mayo orthopedic surgeon). I got another opinion in 6/2020 and this surgeon (with outstanding reputation from Twin City Orthopedics) said my foot could manage the fusion surgery and eventually my foot would not tolerate anymore shots…..which I hated anyway. Thus, I got the surgery two weeks later and ever since I have been working my way back! I can now walk a slow, but steady mile in my own tennis shoes, on an even surface without an orthodic and with less pain than before the surgery. Twice a week PT therapy for the next 8 weeks and hopefully, my foot will allow me to do things I haven’t been able to do for SO long! Thx for asking and caring❤️ Take care!

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@migizii That's a great story – I have had 3 wonderful docs at TCO, and recommend people consult with them all the time. Last night my best friend told me her hand surgeon advised her to have both wrists fused due to arthritis – less than two years after taking x-rays and telling her they were "fine." I immediately suggested consulting TCO for someone who specializes in carpectomy without fusion, because I had gotten the same advice, changed surgeons & had good results without fusing.
Your story reinforces what we tell people here – be your own best advocate, and don't be afraid to get a second opinion. I hope your healing continues to go well – several year out from surgery my sister in law is doing well on her fused foot and ankle.
Good luck with your therapy – that reminds me I need to go do mine!
Sue

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@sueinmn

@migizii That's a great story – I have had 3 wonderful docs at TCO, and recommend people consult with them all the time. Last night my best friend told me her hand surgeon advised her to have both wrists fused due to arthritis – less than two years after taking x-rays and telling her they were "fine." I immediately suggested consulting TCO for someone who specializes in carpectomy without fusion, because I had gotten the same advice, changed surgeons & had good results without fusing.
Your story reinforces what we tell people here – be your own best advocate, and don't be afraid to get a second opinion. I hope your healing continues to go well – several year out from surgery my sister in law is doing well on her fused foot and ankle.
Good luck with your therapy – that reminds me I need to go do mine!
Sue

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Thanks so much Sue!

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@sueinmn

Thanks for the encouragement everyone. I don't feel inspiring – just stubborn. The women in my family occupy their bodies for an average of about 90 years, so I have to keep after mine so I can be an active occupant.
Sue

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Hi Sue. I don't know how you do it; dealing with mac AND pain. When people ask me how I deal with my lung issues with grace; I tell them that I feel grateful that I am not dealing with chronic pain as well. Do you have some good massaging gadgets to help you?

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Don, I measure my progress in various ways. At one time, I could not walk 10 feet without having to sit down and catch my breath. Now, I walk indefinitely. I used to end up in the hospital with exacerbations at least once a yr. I have not been in a hospital or ER since 2016. I have not had a cold or flu in yrs except for the flu shot last yr made me sick as a dog. More and more energy is coming back to me now. My normal oxygen level used to be 90, now, it is 97. So, to answer your question on measuring progress, mine are measured in improvements.

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@windwalker

Don, I measure my progress in various ways. At one time, I could not walk 10 feet without having to sit down and catch my breath. Now, I walk indefinitely. I used to end up in the hospital with exacerbations at least once a yr. I have not been in a hospital or ER since 2016. I have not had a cold or flu in yrs except for the flu shot last yr made me sick as a dog. More and more energy is coming back to me now. My normal oxygen level used to be 90, now, it is 97. So, to answer your question on measuring progress, mine are measured in improvements.

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Very impressive Teri.

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