Jeremiah 33:3
“Call unto me, and I will answer thee, and shew thee great and mighty things, which thou knowest not.”
Hi friends!
I know it has been a while since my last update and I apologize for that. It hasn’t been the easiest of roads recently so, unfortunately, updating didn’t make it very high on the remembered list.
First off, I want to thank you for your prayers concerning the tilt table test. It ended up not happening. I stopped all medicine (including my continuous Benadryl pump), didn’t do my feedings, and felt absolutely terrible for nothing... or so it seemed to me at the time. I was nearly furious to find out that I had done what they asked which made me quite ill, waited around 18mo, stayed the night in a hotel, and arrived at the hospital early only to have a clinic visit with a PA nonetheless... not even my doctor! Turns out apparently the guy that answered the phone didn’t even check into it when my sister had contacted them a few days earlier to finalize things and clarify what exactly they had me scheduled for. He just told her the normal protocol for someone coming in for a tilt table test. I was less than thrilled to put it mildly. However, once I got over the shock, got my medicine started back, and had the appointment, I was actually pleased. She was quite nice and was willing to go off of my symptoms and issues and treat the problem without making me go through the miserable test again! She thinks my issues aren’t actually stemming from my heart rate but actually the heart rate responding to my blood pressure dropping. She prescribed a blood pressure medicine for me to try, recommended some extra heavy duty lower leg and abdominal compression, I’m supposed to keep a daily log of my blood pressure, and I have a 6 month follow up appointment. Even though I wasn’t at first, I’m really grateful for how things worked out.
For nearly 2 months now I’ve been struggling with constant headaches. They affect me some neurologically, but we don’t know what is causing them. I’m not light sensitive except for bright sunlight, I’m fine with noise as long as it’s not a loud roar such as the vitamix, and I have a frequent loud swooshing noise in my ears. It affects my hands in the way that they will suddenly give out resulting in me dropping/throwing/spilling things, I occasionally lose the peripheral vision in my left eye, and struggle with memory off and on. The pain is greatly increased when I bend over. I don’t normally get headaches that often so to have them daily and life altering is both new and frustrating to me. I have spent most of my days since the last update in pjs and horizontal on the couch. But all of the social restrictions are delaying me from finding answers about this issue. Hoping and praying it is something simple instead of another complex thing to deal with. I told the electrophysiologist's PA about them when I went to Duke and she mentioned the possibility that it could be my Chiari malformation starting to show symptoms or headaches stemming from my blood pressure issues. Or they could be migraines....who knows?!
I hope everyone has been safe and stayed away from all the germs from this coronavirus! I know it has been difficult for those having to isolate, quarantine, or social distance. But would you do me a favor? Every time you start to get down or antsy from cabin fever...think of the many mast cell patients and pray for us! This is life for the majority of us. We live in a constant state of isolation from the world around us. Just in the way everyone is having to lock themselves up away from the coronavirus, we have to do the same every day of our lives but ours is from perfume, fragrance, essential oils, cleaners, and much more...things the world uses every day. I’m not asking for pity. Pity does no good...but prayer does! We need your prayers for strength each and every day of our lives and that maybe someday there will be a cure discovered! Don’t take this the wrong way, but one positive that I’ve found in this huge outbreak is the world getting a little glimpse of understanding of a mast cell warrior’s life. No, I would never wish it on anyone, but please take this opportunity to take a peek into our lives! Let it help you to pray for us! When you go to the store and have to change your normal because they’re out of something you normally get, spare a little thought and prayer for the mast cell patients who may be struggling and having to search to find food because they can only have a specific brand of a specific product and that can’t be changed due to life threatening complications. I pray for all of you who have been affected by this tragedy! I know life is hard right now for most, but perhaps the more encouraging thing is that the Lord knows! We may not know why this is happening, but we certainly can trust the One Who does and know He is working it all out for our good and His glory!
Below is a song that has really meant a lot to me especially recently. I couldn’t find it on YouTube so you can click on the link below and scroll all the way down until you see a play button and a time bar. You’ll be able to listen to it there: https://wilds.org/store/product/cast-your-care-on-him/
I Peter 5:7
“Casting all your care upon him; for he careth for you.”
I’m forever grateful for you and your prayers!
Taking Life One Cooped Up Day at a Time....
Allison
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