Thursday, October 29, 2020

Update 2020 & How You Can Help

Thanks Webbs!

        It’s hard to comment on how things are going in my life without talking about COVID-19. In March, when it first became clear to the public that this was a virus to be taken seriously, I was able to leave Louisville and spend a few months at my parents’ house in North Carolina. There was a lot of uncertainty at the time about how long people would isolate themselves, and I don’t have a family or a large support network here in Louisville, so the transition made sense.  I enjoyed being with my parents for a while, and I think I was a welcome presence in what has become their mostly shut-in lifestyle to minimize infection risk. I was fortunate to be able to work from my parents’ home before the University of Louisville instated a large furlough in May. To make the most of a less than ideal situation, and since I had a lot of free time, my sister Myra and I planned a trip to visit our sister Leah out in Denver, Colorado.

Originally, the plan was to drive to Louisville, spend the night and then get in a large rented SUV and drive 16 hours with Myra’s two kids under the age of 3. As it goes with little sisters, things didn't go as we planned and she actually flew with the kids out of Louisville and I drove the trip solo, with all the “needed” baby/kid stuff. I’m an extraordinary vacation planner, I know. However, I must say, I spent about 10 nights in Denver, and really liked it. The weather was great and allowed us to spend most of our time outside, which was the intended plan due to the concerns with COVID. While I cannot speak on the winter weather, I get why people have been moving and continue to move to that area, which is evident with prices of real estate. 

We timed this trip to be back in Louisville for the end of my furlough, but it did not go as I expected. Shortly after getting back, I was notified that my furlough was extended. From a monetary standpoint, the furlough was honestly not that bad for me. This was especially true when the CARES Act was giving people an extra $600 a week. Although this ended back in July, I am lucky that I do not have kids, live a fairly frugal lifestyle and have family support if I  ever needed it. However, I cannot imagine what some families, especially single parents that have been laid off, are doing to get by without support like the CARES Act.  Meanwhile, I think it’s safe to say that it seems that those in Congress are far more concerned about their power and political gain, than helping the people they are supposed to represent. This crisis has only further exposed how corrupt and broken most of American politics have been for decades. We all deserve better.

So, while I have had some quality family time this year, and I have had a lot of free time to do some learning and self-development on my own, COVID-19 has really delayed-if not totally wrecked-some opportunities I have been excited about and a few things I have been trying to take care of for a while. I’m trying to coordinate 2-3 surgeries in the near future. One surgery is more of a hope and what I originally came to Louisville for, but the other two are for things that could immediately improve my comfort and health. 

The first of these two surgeries is about removing the bone/calcium growth in my right hip.  I described how I developed HO (heterotrophic ossification).  HO is a condition where bone grows in muscle, tendons, or other soft tissues in the body, and unless things have changed recently, no one has really discovered why. My case is pretty severe and I have a very large chunk of bone or calcium present in that hip (as evidenced in the image below). It is a significant source of daily discomfort and pain, but maybe most frustratingly, it really limits my range of motion, which impacts a lot of things and is the source behind the discomfort. It doesn’t serve to elaborate on it here (perhaps a later post), but it’s possible that this condition has hampered my progress in treatments or research studies, as well as general efforts to stay in shape. It might have made me a less than eligible candidate for research studies I want to be a part of. Ten years ago, I explored heaving surgery to remove some of this extra bone, but mine comes with even more risk, due to its location. For this reason, I’ve been referred to an orthopedic oncologist. Orthopedic oncologists have more experience cutting out tumors in that area and are more comfortable working with my hip, that is so close to main arteries, etc.  I had updated images taken in March but then COVID-19 happened, and it has not been  until this week that I have finally been allowed to go back in for the follow up to discuss options.  Plus, COVID-19 might make a risky surgery even more risky. Hopefully, my follow-up goes well and the doctor and I can see the risk is worth it. 

My newest hopeful surgery came as a surprise. About a month ago, I had an updated MRI done that revealed I have a potential cyst or excess scar tissue that is causing compression on my spinal cord. I have had MRIs done in Charlotte, Miami and 2-3 here in Louisville, but we have not been able to get a good image of my injury site due to shadowing from the spine stabilizing hardware that was put in at the time of my accident. One of the many smart people at KSCIRC had the idea to use a different MRI, with a weaker magnet, with the hopes for less image distortion, and she was right. Cysts on a spinal cord, especially after a traumatic injury like mine, are not all that uncommon, but the problem is the compression on my cord. This means that it is pressing on my spinal cord, and possibly preventing communication signals from crossing to their intended target, which could cause paralysis or loss of function. How long has it been there? We are not sure, but knowing exactly where the cyst was, we were able to go back and see that it has been present at least since my Miami MRI from 5-6 years ago. In theory, this means that removal of that cyst and relief of the compression could lead to something positive for me in terms of recovery. It also might mean, sadly, that all the things I have done in research, and all of the funding that went into it, might not have been used for maximum effect. While it is very disappointing that this was not discovered until now, I am glad it was found. Removing it may benefit me and it likely would have needed to be removed if I am to get that elusive implant. 

So, I am hoping to figure out what my options are and formulate some plan or timeline, if COVID allows one.  I am hoping that these things bring me some much wanted or even needed relief and also give me some hope for some positive news. I have been waiting for the day to share something substantially positive with my friends and family for years with regards to my recovery, and hopefully those days are approaching.

While this post has been way more about me than I like, I write it with the recognition the last 7-8 months have been a tough and interesting time for all of us.  There has been so much stuff going on, from protests (including ones right outside my door in Louisville), to the continuing ugliness and craziness of politics that is amplified in an election year, and obviously, managing a new reality with COVID-19. The last thing I want to do is draw more attention to myself and bring up my birthday, but this Halloween means another year of my life has passed, and I have so much left that I want to accomplish. Since COVID impacted my opportunity to do another annual fundraiser for The Walk On Foundation, I am trying to embrace this, my 41st birthday, and encourage people that are motivated and able to help to consider making a donation. 

While we usually raise money for just general research, this year I am being more specific. The funds we raise will be used to help support the participants in these various research studies. Being in studies is financially tough for many participants. It entails moving here for many months, even years, and often at their own expense. Often, these participants need to bring family with them to help them with day to day living. This can make research participation very difficult or even impossible for some. I am looking to use money raised by the foundation to assist participants that would experience financial hardship to find housing, transportation, or caregiving. 

This global pandemic has impacted and continues to effect so many aspects of our lives, and sometimes it feels like there is no end in sight. I am hoping and praying that, as the next few months unfold, things become less ugly and chaotic, and we gain clarity about this virus and treatments for it. More than that, I hope we can come together as a country to look to see how we make things better for all, regardless of who is in the White House.

Click HERE to help. Thank you!

Happy Halloween! Kidding, it's just my HO. Scary!