Trying to adapt and feeling numb...

I went to the speech therapist and they did a barium swallow test. I had to eat applesauce, a chip, small fruit pieces and drink water while we watched it live on a monitor. All of these were coated in barium and they cleared my throat. They said I should go to an ENT and possibly a gastroenterologist next. Those specialists would be able to see if the problem is further down my esophagus into my chest. Their theory is that those are the muscles causing the problem. It seems they spasm too much for no reason and then they don’t spasm properly to push my food and pills down. My theory is that the swallowing issue is a herx reaction and will go away now that I’m off the anti-yeast probiotic supplement. Also, detoxing from the IV antibiotics is extremely hard on your body and that could have added to the problem. The good news is that I think it’s getting better day by day. I’m still eating jello or ice cream to make sure and push the pills down but at least I’m getting them down!

I also started a stimulant medication that is supposed to help my brain fire the right messages or at least get it to recognize signals better. The down side is that the medication can increase the chance of seizures before my body gets accustomed to the drug. I had a seizure the first day I took it and that upset me because it was a “bigger” seizure than I have had in the past month and it lasted for awhile. I cannot say that it was solely due to the drug though. I had been at the hospital the day before to see the speech therapist and had to be wheeled all over the hospital in order to get to radiology for the barium test. Side note – picture me in a hospital wheelchair with an oxygen tank attached wearing sunglasses and a hat to deal with the fluorescent lighting and then headphones over my hat to keep the noise out. I choose to think people stared because I looked good instead of just weird – haha. Also, underneath the headphones I had in my ear plugs which are the kind used at shooting ranges. They are the best around and yet even with all of that everything was still so loud. That should better explain just how sensitive my hearing is right now. I could still hear everyone talking around me, doors shutting, and even the beeps in the elevators! Because my severe sound sensitivity can cause me to have a seizure, I have only been out of the house 4 times since I’ve been home – that’s almost 3 months now. So I’ve not been around many things that stimulate your central nervous system. Then the next day my nurse came to the house for my weekly blood draw and PICC line dressing change. We also had a UPS guy who was apparently illiterate since he rang our doorbell even though there’s a big sign on the door saying to NOT ring the doorbell. Unexpected loud noises trigger my “startle reflex”. If I’m standing I will fall straight to the ground and I can also go straight into a seizure ergo the need for the sign. It was that afternoon that I had the seizure so I think it was just 2 days of being over stimulated as well as the new medication that caused it.

As you can imagine I hate the fact that I am basically trapped in my house. I want to go out so badly but we haven’t tried it because of the high risk of having a seizure. The seizure itself might not be so bad but I could really hurt myself when I fall to the ground when one hits. So, I think God did show me something during my trip to the hospital. It was the first time I’ve tried to maneuver a wheelchair on my own and cover a lot of ground. Usually my husband or my mom just pushes me but I’m really tired of being so dependent on other people so I wheeled myself around. There were several unexpected loud noises while I was there but when my body went limp it didn’t matter because I was in a wheelchair with arm rests and leg supports. It made it safe for me to deal with my sudden loss of muscle control. My mom was with me and we started thinking about how a wheelchair might be the answer to getting me out of the house safely. I immediately started searching for wheelchairs online but all of the ones with leg supports are over 40 pounds. I’m not sure if mom could get that out of the car trunk even if I was able to help her lift it. So, now I’m trying to ask around to see if anyone can tell me where I can find a lighter weight wheelchair with leg supports.

M works from home which is such a blessing but his office is downstairs so most days I end up in the bed alone. All of this alone time means I often think or dwell on situations too much. I couldn’t help but recognize how bad things have to be when you get excited over the possibility of getting a wheelchair. Also, I think about the fact that if and when I do get out, I won’t be able to “fix up” like I used to do. It won’t be that I’m merely going out without my makeup with hair that’s too long and needs washing. No, I’ll be sporting my anti-seizure look with the sunglasses and headphones like I was at the hospital. I’ve lived in the same city my entire life, except when I was away at college, which means that I rarely go anywhere without seeing someone I know. I picture running into someone who doesn’t know my situation and seeing them either look uncomfortable about what to say or worse to have them look at me with pity in their eyes. I’m not sure I could handle that. Maybe that’s my vanity talking but it’s been hard on me to realize that I may have to endure that in order to escape my bedroom and get out into the world. However, I’m beginning to see it as a small price to pay in order to have some sort of life outside of my house.

I know I’ve written a lot but I’ve always said people don’t have to read this if they don’t want to – ha! So, I want to be brutally honest about how I’m feeling right now. I’m depressed and I recognize that’s a completely normal emotion for my current situation, not to mention the impact of all the “downer” medication I have to take for my seizures. But when people tell me how strong I am or how they are amazed by my faith, I sometimes feel like a fraud. I go through times where I don’t feel strong at all and I am holding on to my faith not by a rope, but by a single thread. There are times when I question God about why I have to go through this. I tell Him that I’m crying out to Him and yet sometimes feel as though He must not hear me. I want Him to heal me faster if it’s His plan to heal me at all. I get mad about what I’m going through and I know that doesn’t mean I don’t have faith. I know God’s with me through all of this but I’m human and I’d rather He fix my problems instead of Him having to carry me through them. As always I try to think about all the people who have it much worse than I do but sometimes it’s hard to see beyond your own pain. I feel guilty about the fact that I haven’t even been able to make myself read my Bible or watch any online sermons. What might be worse is that I’m noticing that my anger about my situation is fading and I think I’m somewhat numb right now. I do credit myself with the fact that I’m getting better at just adapting to changes in my life now. I try to simply adapt to any new or worsening symptoms. I’m adapting to being in the bed all the time and not seeing people. I’m adapting to the fact that I have no idea when I’ll be able to handle the noise of the outside world without plugging my ears up. I’m adapting to never knowing when I’ll be able to drive my car. I just try to keep adapting to whatever happens next. If I can’t make myself adapt and accept these things the only other option is crying all the time. I’ve done that before and it solves nothing. Sometimes it can even trigger a seizure. I can’t have pity parties anymore so I’m numb. I read something written by a person who was going through a horrible situation health wise and it wasn’t just her life that was at stake because she was pregnant and her baby’s life was at stake as well. I can’t imagine being in that situation but reading what she wrote after spending most of her pregnancy being hospitalized helped me. She wrote about becoming numb to what was happening and she looked at that lack of emotion as a gift from God. I cried when I read about how she thought God was allowing her to be numb because otherwise she would be going crazy. Her thought was just because she couldn’t bring herself to pray that didn’t mean God couldn’t hear her soul crying out. I think she’s right. God knows what I’m going through and He knows everything I’m feeling. He’s still here with me and He knows how very human and imperfect I am. In writing this I just became aware of something. I think He’s beginning to show me what being saved by grace really means. He looks down on us with an unconditional love that we cannot comprehend. Even though I’m not feeling spiritually strong right now, He still loves me. His love and strength are the very things that have gotten me this far in my very difficult journey. The Bible says that God is love and that it is by accepting Jesus Christ that we are saved. None of us could ever do enough good works or be perfect enough to earn salvation. It is by the grace of God and His love for us that we are saved. So right now I may be feeling numb but that doesn’t mean God is not at work in my life, nor does it mean that He has forgotten me. His presence in my heart is the only thing that is pushing me through each day right now. I know the numbness I feel is not permanent. I believe God is showing me that just as my current mental state is not permanent; my current physical state is not permanent either. I just have to hand every bit of this over to God every day and realize that my soul is constantly praying to Him, seeking Him, and trusting in Him. Even when I’m numb, I can still count on Him.

“ ‘For I know the plans I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you hope and a future.’ ” Jeremiah 29:11

Much love to you all –
K