Holding on to hope...

I went back to the doctor on Monday (the 28th) after a very rough week. I had a seizure on Wednesday afternoon but it wasn’t the same as my other seizures. It wasn’t as long (thankfully) and at the end it was like my body just went limp and I had to sleep. My blood pressure went from being in the 150s/80s right back to its’ usual 80/60 and my pulse dropped from around 160 to 55 very fast. I immediately slept for hours but M kept a close eye on me of course.

Seizures aren’t the only set back though, I’m also having difficulty swallowing. I’ve always had some issues swallowing food and even had a test run 5 years ago where I had to swallow a barium tablet while being x-rayed so they could see if there was an obstruction causing the problem. Nothing was there but it showed where the tablet stayed in one part of my esophagus for 10 seconds or so and another area it hung out around 15 to 20 seconds. Doesn’t sound like a long time but it feels like forever. However, the powers at be at that time prescribed me an acid reflux drug and called it done. Just another reason why I don’t tend to trust doctors very much – they’ve missed or misdiagnosed so many of my illnesses in the past! My current swallowing issues are much more serious though. Serious enough that I haven’t been able to swallow pills and when I do they seem to dissolve in my esophagus and give me horrid heartburn. It got to where all I could swallow besides water was ice cream and jello. It actually feels like my throat is closed or that the sides are touching each other. It’s scary and somehow just another expected unusual issue that I seem to keep coming up against. The fear that the choking feeling creates is another problem. I had three “mini-seizures” Sunday afternoon because I felt I was choking. The choking upsets me, my emotions trigger brain activity that somehow ends with seizures. We’re trying to keep me drugged so that doesn’t happen but even so it’s been a rough week.

The doctor believes the swallowing issue could be one of two possibilities. First, it could be a herx reaction from the anti-yeast medication I’ve been on which would make sense because this flared up so quickly. The other reason has to do with my autonomic nervous system malfunctioning and it is haywire right now. To put it very simply, the autonomic nervous system controls all sorts of things from your heart rate, blood pressure, body temperature, etc. Mine has been out of control for years. The doctor thinks at the worst that my autonomic nervous system has been a little “fried” and for now my brain has forgotten how to swallow properly. We have an appointment set up with a speech therapist next week who will work on retraining my brain and esophageal muscles to swallow correctly again. We could have gone this week but we’re praying that this is simply a herx and that since I quit taking the anti-yeast medication on Saturday that we will see a marked improvement in the next few days. If not, I can get in to see the speech therapist this week. The only reason we don’t want to go is because it is almost impossible to get me out, to the hospital, in the 90-100 degree heat, with all the noise and not expect me to either have a seizure or just pass out. We ended my doctor’s appointment with me having crawled out of the wheelchair and onto the cold tile floor. I was clammy and felt faint from all the exertion. So, it isn’t that we don’t want to jump on getting this taken care of, it’s just that sometimes getting me out of the house can be more of a danger than trying to wait this out.

I have also stopped the IV antibiotics for 2 months. We are praying to see a big difference in how I feel since you normally feel worse when you are on treatment than when you are on. I will still be doing a bag of IV fluids every day as well as taking my blood thinner and Benadryl through my PICC line. This will make sure and keep the line open in case we have to go back to IVs after the break. We’re praying that if I do need more antibiotic therapy I will be able to handle orals now instead of having to keep my PICC line in. I can’t begin to tell you how I would love to be able to take a shower or bath without having to keep my arm wrapped and my line protected from the water! Pray that I see strength return to my body and my mind. Pray that I feel God leading me to an end of these IVs and toward a healthier life. Also, please continue to pray for all my treatment friends. I keep up with them and there are a few still at the clinic, some have gone to another clinic for different therapy options, some are home on oral antibiotics – but they ALL need your prayers. Prayers for hope and healing and prayers for God’s love to be with them as they continue down their own paths trying to find their way back to health!

Now, I have been in this bed and cried out to God about all of my troubles and especially this swallowing issue. He knows my pain, suffering, and sorrow. I know there are many other people out there in much worse situations than I. I try to focus on that when I sit here and think about how my “life” is really no life at all. The doctor says there could be a scientific reason I feel that way – again having to do with my nervous system issues, etc. Right now the experiences that make up “life” – for instance, smelling flowers in bloom, feeling sun on your skin, talking to family and friends – are not available to me in a many ways. My senses have gone haywire – sound and light sensitivity, not being able to be around more than 1 or 2 people at a time, my daily fevers due to my inability to regulate my body temperature – ALL of these things are keeping me from experiencing life as a “normal person”. Therefore, the hormones that control how I feel about my situation seem to be haywire too. Some days I feel thankful to know the improvements I’ve made from this time last year. But, there are the days when I wonder if I haven’t just traded symptoms basically. For example my heart rate doesn’t go into the 180s when I walk anymore, but I now I have seizures when I didn’t have them before. It’s hard to try and stay positive. That’s the hardest part about all of this. It’s the part that I battle the most – the battle to NOT fall into some depression over things I can’t do or can’t have.

God is working on teaching me how to hold onto hope – not hope in my doctors – but hope in HIM. He’s telling me to hold onto hope in HIS plan for my life, and TRUST in that hope that He is sovereign over my life. He may not have laid an easy path before me but He has never once left me on that path alone. So, I cried out to Him and He answered by sending me to watch another online sermon about Job. Job, a man who despite having everything stripped from him never once kept from hoping in his God. Job was helpless in his own situation and he gave it all over to God. He praised God and even when he cursed the day he was born, he NEVER cursed God for his problems. Don’t worry, I know I’m not the “perfect servant” Job was, but I know God forgives me for my shortcomings though!

I know there is some reason (which I may never know on this earth) why I’m going through this. I don’t even know exactly why God wanted me to start this website or to feel like my story was worth sharing – but I don’t have to know these things. God knows. God’s plans are intricately woven throughout history and sometimes when you step back and look at the “big picture” of what God’s plans are you realize that your pain, hardships, sufferings, etc. are simply just tiny parts in a much larger plan. I pray to keep my hope. I pray for God to fill me with strength of course, but I know that hope in Him is what will get me through to the end of this. I have fought too long and too hard to just lie in this bed and whine. I will see all of this through because I have to and God’s promised that I will not see it through alone. He will carry me through the days that I cannot handle. How do I know that? Because God’s hope lives in my heart and I am blessed to feel God filling me with hope as I type these words. I have been mad and I have cried and I have come to the understanding that I have to continue to hold onto the hope God gives me. I cannot give up hoping and I must remember to keep my hope fresh every day even when I feel like I’m being dragged down. God is my reason for hope.

Here are some of the verses that have touched me and seem to fit with all of this:

“O sing to the Lord a new song; sing to the Lord all the earth.” Psalm 96:1 (NRSV)

“Your steadfast love is as high as the heavens, your faithfulness extends to the clouds.” Psalm 57:10 (NRSV)

“Though the fig tree does not bud and there are no graps on the vines…I will rejoice in the Lord, I will be joyful in God my Savior.” Habakkuk 3:17-18 (NIV)

Wishing you all a happy 4th of July weekend and much love!
K