Well, as i’m writing this I’m sitting outside a coffee shop in the SUNSHINE drinking my new favorite drink, a chai with hemp milk. Umm seriously so good. I feel so blessed to be here in this moment. It’s times like these that make me so grateful for life.
The past couple weeks have been such a roller coaster for me. I feel so happy that it is up and down and hasn’t just been down. I was getting an infusion once a week, but last Thursday when I was suppose to get it I refused (that’s what they like to call it). I was sitting there for 5 hours getting medicine pumped into me that made me feel so sick and killed my immune system. Already not my favorite thing, but then the last time I had it on my way home I look down at my port and it’s gushing blood. Which means my platelets are out of control low, still…even after sitting there for 5 hours. I am seriously not ok with that. If i’m going to get something that makes me feel terrible and is costing my insurance thousands of dollars I at least want it to keep me from out of control bleeding for a couple hours after. When I refused it this last time a nurse came out to the waiting room to publicly announce that I was refusing their recommendations and was at danger of sever bleeding and death. Ha kinda awkward for me with 20 other people listening and looking shocked. I’m happy to say that there’s been no crazy bleeding and I’ve felt kinda good! Actually I’m thrilled to say that!
Rous and I went up to Portland last week to see a specialist, that I’ve actually seen at least 3 times over this 11 years. He’s one of the most interesting and intriguing men I’ve ever met. Which I don’t know how I feel about those qualities in a Dr… I was prepared to be sobbing by the end of it, which is a norm for all my appointments. He gave me so much hope though. Every Dr. I’ve ever seen has told me I’ll have this the rest of my life, and that’s a pretty hard thing to hear. He was so positive though! He said 5% of people with this disease, it just goes away a year. 5% isn’t a lot, but that brings me so much needed hope. He also gave me a list of new medications that I could try. Not as stoked on that, but we’ll see. Getting a new drugged pumped into me that will potentially kill off other parts of my body or that i’ll have an allergic reaction to scares me quite a bit. When I say having an allergic reaction, i’m meaning your lungs closing up and not able to breath at all. I’ve had that happen too much, and i’m really scared during those times.
There’s a Dr. in Seattle that i’m probably going to see that tests me for all kinds of things that the Drs I’ve seen have no desire and aren’t trained to do. I’ll be tested for mold which might sound weird, but i’m pretty excited about that. I lived in a little house for awhile that had black mold and I got my disease around the same time even though every Dr has said there’s no correlation. Ive had a hard time believing that. If they could find the reason for all this I would be so thrilled. They do a bunch of other tests: allergies, saliva and a bunch of others I don’t understand. The mold test is free, but the others sadly aren’t. Insurance doesn’t pay because, well they won’t make any money off of it and it could potentially cure me. The Lord has provided for us so much and we feel so blessed and so thankful.
I’ve been eating so healthy, and I really do think that’s the reason for feeling so much better. Thank you to all the people that have helped and been supportive and encouraging to me throughout all this, especially about what i’m putting in my body. I’ve been praying for healing for years, and I know that the Lord has everything all planned out, but I prayed and continued to put things that are harmful into my body. I just don’t believe that’s how it’s suppose to be. Pray with faith. Ask and believe. Trust. If you’re suppose to change something or act on something do it. We’re suppose to be growing and learning. Not just sitting and asking.