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My previous iterations of this post were deleted because I accidentally double posted. Sorry.
I have early stage osteoarthritis (OA) in all of my joints. It is painful and debilitating, the bane of my existence. The only viable treatment for my condition is culture-expanded mesenchymal stem cells, harvested from my bone marrow and injected directly into the joints. Unfortunately for me and millions of others with joint pain, the FDA has regulated this therapy out of existence in the US for the foreseeable future, so only way to get it is by paying tens of thousands of dollars in cash at clinic in an offshore haven where the U.S.-based proprietor has government approval.
With a $30,000 gift from my father, I received this treatment at the foreign clinic in Feb 2017. We treated about half of my joints, targeting the most painful ones. It was no "miracle cure," and some joints did better than others, but it DID result in dramatic overall improvement (For reasons beyond the scope of this post, I'm certain it wasn't a placebo effect). It gave me my life back. I could work and exercise conservatively without much pain. I even felt good enough to date a little for the first time in over a decade. I spend the next two years working tirelessly, putting in 70 hour weeks in a call center to save for a second treatment.
In Dec 2018, 22 months after my first treatment, I returned to the offshore clinic for my second round of injections, using the remaining cells I had in storage there. I paid about another $30K to do a massive treatment, hitting most of the untreated joints and re-treating some of the same ones we hit in 2017. I was stoked to get even more improvement.
10 weeks after receiving this second treatment, things were going well, and I was getting very noticeable improvements in most of the joints treated. I could feel a definite reduction in the degree of stiffness and crepitus (grinding) in my joints, which is the telltale sign of cartilage regeneration.
On Feb 16, I was invited to an old friend's birthday party, which included dinner and “duckpin” (miniature) bowling. I was unsure whether I should participate in the latter, because I was concerned that it could place too much stress on the joints of the hand and wrist that’s I’d just had treated. Too much stress on the joints too soon can cause the newly formed cartilage in the joints to break down, resulting in treatment failure.
I remember sitting in the restaurant and internally debating whether to bowl. I was clearly aware that it was a risk, and didn't really want to, but for some reason, was uncomfortable at the thought of excusing myself from the group. My recollection of what when on in my head in those moments is vague, but I didn't want to deal with the discomfort of facing the others, explaining that I couldn’t partake, and saying goodbye.
So I decided to accompany the group to the bowling alley and give it a try, and base my decision to partake on how it felt; then, if it caused obvious pain or strain, I would quit. The clinic's recovery guidelines say to let pain be your guide to activity—if it causes pain of more than two on a scale of 10, don't do it.
At the bowling alley, I held the 3.5 lb. ball in my hand, and it felt easy, almost weightless. I bowled a few test frames and felt absolutely fine. So decided to continue, believing the activity to be safe. I bowled two games, totaling 60 throws of the ball. I didn’t feel any pain at the time, so assumed I was fine.
But two days later, while at work, I noticed my hands and wrists felt "off"—the joints had suddenly stiffened up and become much harder to move across the keyboard than they had been a few days before. The stiffness and crepitus had returned. Overnight, the improvement in the condition of the joints resulting from the treatment had been lost, and they were now in worse shape than before. As the day went on, I had a nasty whole-body flare, the likes of which I hadn't had in years.
Over the next few days, it became apparent that the bowling incident had caused massive, body-wide joint damage, directly proportional in severity to the degree a given joint was used in bowling. I had severely miscalculated the risk. Each throw of the ball had caused joint damage too subtle to detect at the time, but that added up in a big way.
The bowling incident completely botched my second stem cell procedure and caused fresh, raw damage to many of the joints involved. Thankfully, and serving as further evidence of how well the treatment works, the joints treated in 2017 held up better, I guess because the repair tissue in those joints time to mature before I ****ed them up again. But the other half were hurt bad. I am now back to being in deplorable condition overall. I'm in significant pain every day that interferes with my ability to work and do the things I want to do.
I need another stem cell procedure. The total price tag to treat all the joints I want will be $65,000. I have about $50K of that, and it's going to be ****ing hard to save the rest.
I returned to the clinic in September to get my bone marrow aspiration for another round of stem cell injections. We just got the results back. My 2019 bone marrow sample yielded only 40% as many stem cells as my 2016 sample. Because the cells grow exponentially, this means I will only have a tiny fraction of the final cell count I had to work with previously, which means we don't have enough cells to move forward regardless of finances. So this is my new permanent condition.
Because I went bowling.
I’m trying to process this and make sense of it so I can at least understand why it happened. These are the possibilities:
A) I am irresponsible; I chose to take a risk with my crucial joint treatment.
B) I am weak; I somehow couldn’t say no due to my inability to withstand social pressure.
C) I am stupid to have failed to grasp the magnitude of the risk.
D) this is all somehow just unfortunate, but not necessarily my own fault.
You are human, you didn't do anything any person in similar circumstances wouldn't do. You are contending with problems 99% of the worlds population can't even imagine, so you deserve compassion.
You are being hard on yourself. You are not being stupid, don't admonish yourself. Very few people would so bravely contend with the things you deal with on a daily basis.
Not necessarily because you are pairing emotional judgments with factual situations.
Choosing to to something with friends doesn't have to mean you're weak.
Taking a measured risk doesn't = irresponsible.
The last one doesn't make you stupid.
I understand your anger and frustration, but the anger and self-blame aren't going to make the rest of your life more tolerable.
You are looking at this in hindsight. Humans take risks and do things. Everything you did sounds pretty normal and I'm sure most people would do the same.
I recently watched a documentary on Calum Von Moger, a bodybuilder. He did some silly tandem lift with a buddy just for fun and tore something in his arm. I was passively watching, so I don't remember all the details. After tearing something in his arm, he had to have surgery and months of rehabilitation. He lost a lot of muscle and had to rebuild his arm to what it was before. I can't remember how many surgeries and how long it took until he was back to normal, but it was all caused by messing around in the gym.
All you did was bowl with a 3.5 lb ball. You couldn't have known it would damage you or to that extent. If you are normal, you'll be tempted to keep replaying that decision to bowl over and over again in your mind in regret, but it's best if you try to get over this. I read a leadership book that talked about rewriting reality (in your mind) to help you deal with situations that are out of your control. This might be a good time to do that. That's easier said than done though.
You don't mention how old you are, but age and maturity could definitely play a factor in your decision making skills.
You made a mistake. A very costly mistake, and it doesn't do any good to beat yourself up over it. Unfortunately for you, you don't get a second chance to make a better decision.
The only thing you can choose now is how you're going to go forward.
I am sorry you are in so much debilitating pain.
I can understand this and I can see this happening. You were optimistic and feeling better and you wanted to participate in an activity that you knew you would enjoy. Reliving your youth.
Please don't beat yourself up over this. There is no value in that.
I would also explore diet and the impact it might have on your issues.
There is the life we learn from and the life we live with..
My previous iterations of this post were deleted because I accidentally double posted. Sorry.
I have early stage osteoarthritis (OA) in all of my joints. It is painful and debilitating, the bane of my existence. The only viable treatment for my condition is culture-expanded mesenchymal stem cells, harvested from my bone marrow and injected directly into the joints. Unfortunately for me and millions of others with joint pain, the FDA has regulated this therapy out of existence in the US for the foreseeable future, so only way to get it is by paying tens of thousands of dollars in cash at clinic in an offshore haven where the U.S.-based proprietor has government approval.
With a $30,000 gift from my father, I received this treatment at the foreign clinic in Feb 2017. We treated about half of my joints, targeting the most painful ones. It was no "miracle cure," and some joints did better than others, but it DID result in dramatic overall improvement (For reasons beyond the scope of this post, I'm certain it wasn't a placebo effect). It gave me my life back. I could work and exercise conservatively without much pain. I even felt good enough to date a little for the first time in over a decade. I spend the next two years working tirelessly, putting in 70 hour weeks in a call center to save for a second treatment.
In Dec 2018, 22 months after my first treatment, I returned to the offshore clinic for my second round of injections, using the remaining cells I had in storage there. I paid about another $30K to do a massive treatment, hitting most of the untreated joints and re-treating some of the same ones we hit in 2017. I was stoked to get even more improvement.
10 weeks after receiving this second treatment, things were going well, and I was getting very noticeable improvements in most of the joints treated. I could feel a definite reduction in the degree of stiffness and crepitus (grinding) in my joints, which is the telltale sign of cartilage regeneration.
On Feb 16, I was invited to an old friend's birthday party, which included dinner and “duckpin” (miniature) bowling. I was unsure whether I should participate in the latter, because I was concerned that it could place too much stress on the joints of the hand and wrist that’s I’d just had treated. Too much stress on the joints too soon can cause the newly formed cartilage in the joints to break down, resulting in treatment failure.
I remember sitting in the restaurant and internally debating whether to bowl. I was clearly aware that it was a risk, and didn't really want to, but for some reason, was uncomfortable at the thought of excusing myself from the group. My recollection of what when on in my head in those moments is vague, but I didn't want to deal with the discomfort of facing the others, explaining that I couldn’t partake, and saying goodbye.
So I decided to accompany the group to the bowling alley and give it a try, and base my decision to partake on how it felt; then, if it caused obvious pain or strain, I would quit. The clinic's recovery guidelines say to let pain be your guide to activity—if it causes pain of more than two on a scale of 10, don't do it.
At the bowling alley, I held the 3.5 lb. ball in my hand, and it felt easy, almost weightless. I bowled a few test frames and felt absolutely fine. So decided to continue, believing the activity to be safe. I bowled two games, totaling 60 throws of the ball. I didn’t feel any pain at the time, so assumed I was fine.
But two days later, while at work, I noticed my hands and wrists felt "off"—the joints had suddenly stiffened up and become much harder to move across the keyboard than they had been a few days before. The stiffness and crepitus had returned. Overnight, the improvement in the condition of the joints resulting from the treatment had been lost, and they were now in worse shape than before. As the day went on, I had a nasty whole-body flare, the likes of which I hadn't had in years.
Over the next few days, it became apparent that the bowling incident had caused massive, body-wide joint damage, directly proportional in severity to the degree a given joint was used in bowling. I had severely miscalculated the risk. Each throw of the ball had caused joint damage too subtle to detect at the time, but that added up in a big way.
The bowling incident completely botched my second stem cell procedure and caused fresh, raw damage to many of the joints involved. Thankfully, and serving as further evidence of how well the treatment works, the joints treated in 2017 held up better, I guess because the repair tissue in those joints time to mature before I ****ed them up again. But the other half were hurt bad. I am now back to being in deplorable condition overall. I'm in significant pain every day that interferes with my ability to work and do the things I want to do.
I need another stem cell procedure. The total price tag to treat all the joints I want will be $65,000. I have about $50K of that, and it's going to be ****ing hard to save the rest.
I returned to the clinic in September to get my bone marrow aspiration for another round of stem cell injections. We just got the results back. My 2019 bone marrow sample yielded only 40% as many stem cells as my 2016 sample. Because the cells grow exponentially, this means I will only have a tiny fraction of the final cell count I had to work with previously, which means we don't have enough cells to move forward regardless of finances. So this is my new permanent condition.
Because I went bowling.
I’m trying to process this and make sense of it so I can at least understand why it happened. These are the possibilities:
A) I am irresponsible; I chose to take a risk with my crucial joint treatment.
B) I am weak; I somehow couldn’t say no due to my inability to withstand social pressure.
C) I am stupid to have failed to grasp the magnitude of the risk.
D) this is all somehow just unfortunate, but not necessarily my own fault.
Thanks for reading.
The bolded is unlikely to be completely accurate and much less likely to be so in the near future. Now is the time to stop attempting to fit everything you do into such neatly arranged packages.
Concluding Remarks
The field of regenerative medicine is growing and showing increasing potential. Should more studies show clinical efficacy with patients suffering with OA in particular, a new field of therapy will open for such people. This will assist in reducing the significant financial burden and patient morbidity experienced with this and potentially other degenerative diseases.
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