My Superhero Little D
It has been several months since we’ve had a post on here. In fact, it was when our friend Luis passed away, which in many ways was very hard on me. Anyway, we’ve had so much happen in the last year that we thought it was time to share what’s been going on since we left Tennessee.
As kids, we all had a superhero in our lives that came in the form of big brothers, sisters, moms and dads, grandparents, aunts and uncles, and friends. Who knew after 34 years of marriage that I would find out that my hero has been right by my side this whole time, my wife and best friend, Debbie. Debbie, you are my hero in every way possible and I will never be able to thank you enough.
Let’s rewind to when I slowly began to realize how lucky I was to have my hero by my side. It all started last year in Tennessee when I started to go downhill pretty fast, healthwise. There were days I could not get out of bed or I would wake up not being able to lift my arms. My arms would tremble so bad just trying to drink a glass of water, that I could not keep the glass to my mouth. I tried to hide this from Deb knowing she would worry about me. She was already dealing with the stress of learning that her dad was dying and I didn’t want to add to her stress. Before long I could no longer keep this from her because I started to get worse mentally. I was in a really bad place and had no idea why. How could this happen to me, the guy with a glass-half-full attitude?
The depression was setting in pretty fast and it got to the point that I just wanted all the pain to end.
Deb made one of the hardest decisions that she ever had to make, the decision to move from her favorite place on earth, Tennessee and the home we loved back to Kansas City to get me the help I needed. She desperately tried to keep me from seeing the tears that filled her eyes as we packed up and moved back to Kansas City with the hope of finding out what was wrong with me.
Besides having family in KC, why did I need to use doctors there and not in Tennessee some have asked? As a veteran, I receive all my medical care through the VA and my doctors are in Kansas City. I have a team of amazing doctors, nurses, and staff that have provided me with great medical care. Especially from 2015 forward when I got sick on the Appalachian Trail. My team of doctors and “our” favorite nurse Marie worked diligently to figure out what was wrong with me, so to me, the VA, especially the team in KC has worked for me.
After arriving back in KC I was able to get an appointment with my primary doctor, thank you, Marie. I remember stepping on the scale, weighing 227 lbs, the most I have ever weighed. According to the medical community, I was obese which only added to my depression. I told the doctor everything that was wrong with me physically but didn’t tell her about my depression. This, I only shared with Deb, a story for a different time, right Little D?
The first course of action was blood test after blood test to possibly find out what was wrong with me.My cholesterol at a whopping 312, my vitamin D was out of whack and my kidneys were not functioning at their best, but all other tests of my blood indicated I was ok. These results still didn’t answer why I was not able to get out of bed and function normally. And this is where the long road of the past year started. In all the wonderful work that the local VA Hospital and its staff do, one thing that the VA doesn’t have in most cases is a sense of urgency. One doctor referral to another to another makes for a long-ass time to wait, suffer and worry.
So to keep it short here is how it went:
- I stopped taking Lipitor (40 mg) after 12 years. I started taking Coq10 and d-ribose and as the Lipitor got out my system and the supplements replaced it, I had more energy.
- Podiatry: We started with x rays showing a 5 mm plantar calcaneal spur (that’s a heel spur for us laymen). Mortons Neuroma which at times still flares up. After four rounds of stem cell injection with Amniotic Membrane and Umbilical Cord (I thank the women that donated this to the medical field) now I walk without any pain.
- Orthopedics: This is where the fun begins for us. The first question they ask “Where does it hurt?” when I said in every joint they told me they can only treat one thing at a time. Are you kidding me!. Every joint in my body hurts and you tell me to pick one body part. So I say “sure let’s start with why I cannot grip a glass or my camera.” After a couple visits and a month of “rehab” on my right elbow, it was decided that I needed to have cubital tunnel releases surgery and low and behold I can now hold my camera and a glass. BUT, I still have joint pain. Excited to have the use of my arm I was horrified when three days after I got the stitches out of my elbow, it rips open.This is called a dehiscence of the wound and let me tell you it was pretty nasty. This required emergency surgery and another month with stitches and immobility.
- Next up, my right shoulder. An MRI which showed four different tears and one ligament shredded like your jeans, I’m told to live with it, because I am not an elite athlete, but maybe a cortisone shot will help with the pain. On the plus side, once I can’t lift my arm they can do surgery.
- Last up, my right knee. Obviously, something is going on with my right side. My question was “why was it that I would stand up from the dinner table and my leg would lock up?” The last straw was when my knee locked up and I fell in front of my grandkids. Back to get another MRI. I had a flap on the medial side and a horizontal tear in the white zone of my meniscus where nothing could be done because no blood gets in there. Back to the operating room, 3rd time in three months. Deb was getting to know the surgical team on a first name basis at this point. But, at least we were getting to the cause of all my pain. The surgeon prepared to go into fix one tear but lucky me he repaired four meniscus tears and cleaned up scar tissue on my ACL which was half torn at one time, who knew. The day after surgery I had a pretty bad reaction to the anesthesia and ended up in the ER. I was having PVC’s which led to a follow-up with the cardiologist everything good there. While in the ER I also had a cat scan to see if I had a blood clot, thankfully I didn’t. So back home to recover.
- I can walk normally without falling down or my knee locking up. You would think that by now I would be better. But every joint still hurts to the point of tears every day. All we have done is fix a few things that were broken or simply put a band-aid on them.
- By this time Debbie is reading through all my reports and finds out there was a cyst that showed up on my liver from the ER ct scan. Luckily for me, the tech went down too far. I brought this to Ms. Choi’s and you guessed it, another CT, which found four cysts, two on each lobe of my liver, but they aren’t cancerous and as of now there are no plans to remove them. Thanks, Little D for watching out for me.
Keep in mind that during all of this Debbie’s dad has been very sick and it is now just a matter of days before he dies. We waited every day for the call and it finally came. On June 29th the call came that Jack wasn’t expected to make it through the night and was in his final hours under hospice care. This was also the eve of my dad’s passing 22 years ago. I looked her right in the eyes and told her I loved her with all my heart and that while we have shared many great days and moments in our lives having our dads pass on the same day is not something I wanted to share with her. I don’t think she got any sleep and when the phone rang at 5:35 a.m., I was sad for her and her sisters and our children. I understood her pain, the same pain I experienced 22 years ago when I lost my father. Jack was a simple man, and Deb honored his wishes. He wanted to buried next to his mom and dad in Souder, Missouri in a plain simple pine box. We honored him with that and a graveside service with family and Deb’s lifelong friends. With everything going on with me I do not know how she managed to get through this, but she did. It helped that friends from around the country sent love and a special call from a dear friend from Utah came at just the right time for both of us. Thank you, Sunshine!
- So after four rounds of stem cell injections with Amniotic Membrane and Umbilical Cord
- 2 MRI’s
- 3 surgeries
- 2 ER visits
- 2 CT Scan’s
- Too many x rays and blood test to remember
Once things settled down from Jack’s passing, it was back to me. We were still no closer to knowing what was wrong with me. So my hero was looking everywhere for answers when she came across an article about Gulf War Syndrome and she remembered the stories I would talk about when I was in the Gulf. During flight ops I remember coming down off the flight deck with my face all slimy from the oil in the air. Apparently, breathing oil for three plus months might do some damage to you. As Debbie researched this syndrome we started putting all the pieces together. Although my surgeries had provided me with some relief I was not getting better. My depression was at an all-time high and truthfully the only thing keeping me going was Deb and her support as well as our kids and grandkids. To me, I felt like a failure. I could not deal with the pain and the fact I had/have no attention span and I’m so tired by 3:00 and sleeping by 8:30 every night. Although I am falling asleep early the few hours of solid sleep every night are outnumbered by the hours of restless sleep because of the joint pain. I felt ashamed, but Deb would tell me everyday that I had nothing to be ashamed of.
I had to do something
I knew I had to do something so I finally reached out to my doctor to talk about my depression, I could not keep it inside anymore or even keep it from my family and friends. Halfway through the visit she looked right at me and said you have Fibromyalgia, a condition characterized by widespread muscle pain. Other symptoms may include insomnia, morning stiffness, headache, and memory problems. And even though Fibromyalgia mostly affects women, come to find out it is also a condition of Gulf War Syndrome along with Chronic Fatigue Syndrome. A condition of long-term and severe fatigue that is not relieved by rest and is not directly caused by other conditions. It put my mind at ease that we finally had a direction to go. Without Debbie, I would never have gone in and talked about my depression. Currently, I am teaching myself to live with the pain and what triggers a really bad episode. If you know any Gulf War Vets please get them to get a: Gulf War Registry Health Exam.
So we start looking into the disease of Fibromyalgia to find out what we can do without taking meds for the rest of my life. Debbie realizes that she may have the answer right in front of her in a book from Trim Healthy Mama. We started eating a lot healthier and going to more of a plant-based lifestyle. We also started an exercise routine of walking three miles every other day and walking/running two other days. Don’t get me wrong, I hurt everyday but the exercise does help and now it’s a matter of finding the right amount without overdoing it. And on the plus side, I have gone from being obese at a weight of 227 down to 194.8 as of this morning and I have only one person to thank, my best friend, my wife and most of all my hero.
With all of my health issues, I truly thought I would never put my backpack on again. Debbie knew this was affecting me, but she has never once discouraged me from hiking, in fact, it has been just the opposite. So on a recent trip to Chattanooga to see some our dear friends, Jere and Rachel we talked about me hiking the Pinhoti Trail with Jere.
But once back home the depression kicked in and I started selling tents, a new backpack and going through all the stuff I might give away. That’s when Debbie stepped up and said you can hike, but you have to promise me that you will listen to your body. She has always believed in me, even after all that I’ve put her through with my health. With her encouragement, I now have my plane ticket in hand and I cannot wait to hike the Pinhoti Trail with Jere in November.
On September 8th, I go to Neurology and if all goes well with that visit and my Pinhoti hike, I plan to take a little walk in the woods, come February with Little D’s blessing.
Here’s to now
3 Mile and Little D