The MRI. I am getting some questions why I needed the MRI so I thought I would just post an update.
My spinal cord was injured because a virus attacked it. The virus caused swelling and the swelling damaged the spinal cord. My spinal cord was damaged at the C5-C7 vertebrae level. It was not severed by trauma like a bone or a bullet. It was damaged by swelling. Therefore, I am an incomplete injury. Some signals from my brain still get through to my body parts…some are great, some are weak, and some are extremely scrambled and confused.
I have always had a deficit in my arm strength (mostly my triceps) and would only have more trouble in my fingers when I was really tired, but overall I had good movement. If I had been a complete injury, I would have had very limited arm movement and no hand function at all. So, from my shoulders down, my muscles were weaker, but I was totally able to overcompensate weaker muscles with my stronger ones.
For 9 years now, I have tried extremely hard to not only be independent, but to learn every possible wheelchair skill I could. I have taken much pride in “doing it all by myself.” I wanted to work hard to be healthy and strong for my long-term health! I have always enjoyed being active and have enjoyed finding new activities from my wheelchair.
But…it is possible I just may have overdone it.
The past year…really well over a year now…I have had a lot of issues. My pain levels have been much higher, my spasms have been much more intense and more often, my fatigue was overwhelming and I have had much more trouble with my hands and arms…especially my left side. I am able to move but I am not able to do much with any sort of weight or resistance. I was doing adapted cross-fit at one time, I loved weight lifting…and honestly, I really struggle with just light therapy bands right now and even getting 3 pound weights over my head. It has been really frustrating!!
I am thankful for a good neurologist, a physical therapist who has expertise in seating systems, a neurological physical therapist who is working with me every week, and a personal friend who was a spinal cord rehab doctor before he retired. Together, everyone has come to the same conclusion…they think that I have overused my weaker muscles all these years and they have just sputtered out from being overworked. Bummer. I am still an incomplete. I am just much less incomplete. I still have much function to be thankful for!
In rare cases (about 2%), people with spinal cord injuries can develop a cyst or syrinx in their spinal cords in the area of the original damage that can cause loss of function over time. So, my neurologist just wants to make sure that is not what is going on and that is the reason for the MRI’s on my cervical and thoracic spine. He does not expect to find any problems, but to be safe, he wants to rule out the cyst or syrinx.
Things that have helped me function better lately….
- Hasci Waiver. I swallowed my pride and applied for the HASCI (head and spinal cord injury) waiver. It gets me help in my home. My hubby and children have been absolutely wonderful for all these years, but I have needed much more help this past year and I don’t want that falling on them. Jimmy is a busy pastor and my kids are growing up and moving forward in their own lives. They love and adore me and would do anything in the world for me and never once have any of them every complained. So, this is something I can do FOR them! My friend Kattie Hallman, who has always been willing to help me in so many things already, asked for the job to be my attendant and I gladly agreed! Also, my daughter Briley is over 18 and is allowed to also be paid to be my attendant. Between Kattie and Briley, I get 40 hours a week of help. Kattie has been a huge help to continue to help me with therapy both at the house and in the pool, and she is a working machine with anything I need help with here at the house. Briley has been so wonderful to help with evening suppers and anything I need during the daytime or evenings. They both share in helping with my daily stretches (which take 30 minutes! Ugh!), but that is SO helpful to my spasms the rest of the day. I had just lost heart to ask my Jimmy to do this every day and take so much of his time. He is so happy to do it, but I just couldn’t do it anymore. So, it has been very helpful to be stretched again daily.
- Baclofen. This muscle relaxant has helped me tremendously! I have not been on any meds long-term since I have been paralyzed. I was told early on by my neuro at the time to try to stay off all you can and I took that seriously! But, my spasms at night had gotten so intense, I was getting very little sleep and the pain the next day was keeping me in the bed more than out of it. So all of my medical team strongly recommended that I start a nightly dose to see if it would help. It has most definitely helped! I still have spasms, but they are not so violent and I am most certainly getting sleep now! I always wake up multiple times in the night and have to re-position because of pain, but I am able to go right back to sleep and that has been such a blessing.
- A power chair. The seating specialist barely even allowed me to get a manual wheelchair. She was very concerned with the overuse that had already happened and I am not pushing with good dynamics anymore and so she gave me a one year probation to try a new manual chair. To this day, I am still only able to be in my manual chair about 4 hours without intense pain and discomfort which triggers spasms and the cycle just gets worse. So, I have to get out of my chair. A power chair was given to me and it has been wonderful. I will confess right now that it was once again a pride thing for me. Why? I have no clue. I do think in the disability world, there is a little bit of old school wheelchair philosophy that science and research has now proven wrong. The idea is that if you are able to use a manual chair at all…even if your body dynamics are awful…that you should do it. The old school thought…that I certainly bought into from peer mentors…was that if you don’t use what you have, you will lose it. There is truth that power chairs take less effort…no doubt about it! But…you don’t have to throw the baby out with the bath water. I use a manual chair almost every day in my home. It doesn’t take a lot of effort to roll my chair on my smooth wood floors and I certainly don’t live in a mansion so I am not rolling miles a day in my home. However, let that flooring be carpet, or have a grade to it at all, or be a rougher uneven surface and that is another story altogether! I can’t keep my balance, it takes all my weaker upper body muscles to even push myself, and I can have some strength for a few minutes and then I totally tap out and I just can’t do it! The muscles won’t work. And in just a couple hours, I am SO exhausted I literally cannot even keep my eyes open, my entire body is burning and lightning bolts are jolting through me making my body do crazy things. So instead of getting exercise and movement in my manual chair, instead I am in it shorter times, which means I am in bed or not out and about enjoying my life. But in the power chair, I can go where I want with very little effort. I can tilt it back taking pressure off my backside which eases my pain. I can lift my legs up and keep swelling down and stretch out my legs when they start acting up. All of these things have enabled me to be out and about and enjoy my days so much better! It truly has helped my fatigue tremendously and my pain which has also helped calm my spasms down during the day. To me…pride can hit the road because the end result has been well worth it.
- Physical Therapy. PT has brought back some emotions I haven’t felt in 9 years! When you are in PT, they isolate muscles and work on them. I don’t see every individual muscle in my upper body and how they work. I just know they aren’t working right. But when they isolate certain muscles and I am not allowed to overcompensate with other muscles, it really amplifies what I cannot do and that has been pretty emotional to me. I haven’t felt depressed. It is more like a sick feeling in the pit of my stomach that is quickly followed by a sense of anxiety wondering if I will get any of this back or not. But…it has been good to get a good refresher, learn how to do some things a new way for where I am, and to be able to consistently work on things at home that can only help and not hurt me. They keep telling me that it is not the big quantity workouts that I need. It is the small and precise quality workouts that work specific things. The athlete in me has a very hard time wrapping my brain around this, and many times I feel like I am doing piddly squat in my therapy routines, but I am going to trust the professionals and just obey.
In conclusion, no matter what, I am going to be okay. When I start to get gripped with fear of my future, I remind myself of the truth of God’s Word and how He already has my days planned and that He doesn’t allow anything to come into my life that He has not carefully decided would be for my good. I can trust Him.
Sometimes, the struggles of a disability can be pretty lonely and it truly encourages my heart to be prayed for and so I truly appreciate your prayers for me and your love and care. It truly helps to know that my friends care enough to pray for me. Thank you!!