In a lot of ways, my days have been pretty status quo, but there have been some new developments if I think a little harder. I have been continuing on my infusions of IVIg every other week. Besides being bored for 5 hours in the infusion center, there isn't much to report here. Thankfully the side effects have been minimal, but I am not convinced it is helping at all.
Subjectively I think I have been getting worse. My legs don't seem to want to follow my brain's commands, and seem to have more trouble walking. For sure the numbness, tingling and weakness in my hands and arms has been progressing. Due to this, I have had more issues navigating in my manual wheelchair, and yet I am using it more and more. We have an appointment on the 10th of June at Shirley Ryan Abilities Lab again to begin the process of getting a power wheelchair. Of course, with a power wheelchair, an accessible van is a necessity. (I should probably do a blog post on the expensive nature of a disability, since I think my husband works to pay for all my needs) I am excited though that the new power chair, and the van will make me more independent. I do miss shopping at an actual store (while online shopping is a blessing when you can't go somewhere, it just isn't the same, especially for clothing!)
About two weeks ago, I had an episode of nerve pain in both legs, that grew so bad that I had to rethink what I thought a 10/10 on the pain scale was (even after 2 kids and 20 kidney stones). This was hands down the worst pain I have ever felt, and it landed me in the ER. Thank God for strong drugs! They basically knocked me out for a couple hours, and I woke up feeling better. I was very worried that the pain would come back, or would be here to stay, and knew that there was no way I could handle that.
Even as that thought entered my mind, I wondered "what exactly do I mean?" Many of you have heard a story of someone who has gone through something horrible, or seemingly impossible, and thought "I could never do that!" But what happens when that same terrible accident or illness strikes you? In that moment, you might think along the same lines. I know I did lying in the ER bed: I can't do this, I cannot live in this much pain. I understand feeling that way, but in reality we have no choice. It is not as simple as rewinding the clock to a time before the accident happened, or telling the doctor you decided not have the disease he just diagnosed you with.
It is in these moments that the rubber meets the road. Does all the talk about my faith mean anything? Do I really believe what I preach? My answer is a resounding YES! However, that does not mean that I never struggle or doubt. The pain is very real. There are many days I feel the reality of the fact that I am not strong enough to handle all of this, but it is also in those moments that God reminds me of His strength.
I know I have said this before, but the saying "God never gives you more than you can handle" is not in the Bible. What is true is that God never gives you more than HE can handle. He grows us in our faith, strengthens us, and allows us to persevere. It is only my lack of trust, my lack of faith, that in the midst of excruciating pain, I cry out to God and say "I can't!" Those words should be immediately be followed by, "but I know You can!"
This is not easy. Life is not easy (or even fair, for that matter), but every day is a blessing. Every day is a choice to dwell on all the things we can't do, or can't handle, or to dwell on the goodness and faithfulness of God. We thank Him, the giver and sustainer of life, for every second of every day that we are given to enjoy His creation, our families, our jobs, our friends or pets, or anything and everything you have in your life that you get to enjoy during our brief time here under the sun. Every breath is a blessing, even if it is a painful one. Be encouraged today, that even though you can't, He can!
Until Next Time~
- Please continue to pray for clear test results in September when we return to Mayo Clinic, so we can make decisions regarding my treatment going forward.
- My liver enzymes have been elevated for the past couple months, please pray they return to normal.
- Pray for me to trust in God to provide all we need, whether it is about the cost of the van and everything I need, or the pain I am experiencing. I worry (more than I should), but know I should trust God, and am thankful He is teaching me to trust Him more. He has always provided, and I don't expect Him to stop now. I am thankful that Chad doesn't stress over this the way I do! We make a good team <3
- Pray for the grant I applied for to help (hopefully) with some of the conversion costs of the van. That organization has my case on their agenda for their June meeting.