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.
Days when the sun’s shining like this my faith and hope seem to grow so much bigger. ♥
I’ve had 4 days of feeling “good” and I feel so blessed by that. Today started on the down hill again. Started getting weird pains in my head and immediately started praying it wasn’t anything serious. Man, once I start getting all sick again, it’s just rough. I feel as if i’m going to faint at any second and the fatigue is out of control. I think the thing that I’ve been having the hardest time with though is just the sense of all the people my age not relating at all. It’s pretty hard to make deep relationships during these kind of times when you just can’t understand. I’ve had so much support, and I feel so loved and so thankful for that. I’ve made friends with older women that I’m so grateful for and I love them so much. I guess I just feel so out of place in my age group, but I guess I’ve felt like this for years.
The thing that I’ve learned most from all of this is that the things of this world truly don’t matter. I’ve been having the hardest times watching girls my age struggle with so much vanity. Of course we want to look pretty! Ha I definitely don’t like looking sick that’s for sure. But the countless hours that girls are spending on themselves isn’t worth it. Search your heart. That’s where the beauty is. I know that sounds so cliche, but it’s so true. I pray for the girls of this generation for their focus to not be so incredibly on the outside. It’s so hard for me to watch, and way harder for me to hear. I feel so heartbroken over it. Through all of my suffering, I do feel so thankful that my eyes have been opened to all the vanity that this world has to offer. i pray the same for you. ♥
Finally made it to the ocean! I can not even explain how in awe I am of the beauty of this place. So blessed to be able to come down here and spend time with such an amazing family, and to be able to wake up and see this amazing view. I may not have any energy at all, but I’m so full of joy it doesn’t seem to matter.
I just found out I didn’t get into Gerson. They won’t accept me because i’m too sick. The state i’m in is too dangerous for them to treat. According to them and my other Drs. I should be dead. No one walks around with the number of platelets I have and lives. They say it’s a miracle that I’m still alive with the way my body is. That’s why my treatments are so enforced and encouraged. If i’m not having internal bleeding though I’m just not going to get a treatment. They make me so sick. I don’t think I’ve felt this hopeless and helpless before. I’m truly heartbroken that they won’t treat me. I’ve done every medical treatment out there and have even been one of the firsts to try some. I’m really trying to trust the Lord. I know He has a plan. My Uncle text me after I told him the news and said, “you are very capable. So you can’t feel helpless. What’s the next door to open…”. I have to trust that another door will open. He told me to get some sun, that I’m an outdoor flower that needs to grow. It’s so true. My body longs for the sun. It’s so hard on my health to be in this constant fog and darkness. There’s a chance that Rous and I might get to go to Kauai at the end of March. I need it so badly. I’m going to do everything I can to feel good. The woman I talked to at Gerson told me I should start part of the Gerson cleanse at home. That means all organic fruits and vegetables, and a tiny bit of organic mean (which i’m pretty happy I can have meat!). I’m suppose to have 3 juices a day from a very expensive juicer, I guess you get way more nutrients than my $100 one. I think for now i’ll just have to stick to mine. It also involves coffee enemas (sorry if that grosses you out). There is years of build up of toxins and all kinds of things in my body and it really cleanses it and enables the body to take in nutrients better. I don’t know how hard this will be. I live with two very skinny brothers who eat whatever they want, which is always bad. My prayers are for strength during this month trial cleanse (Gerson encouraged a month), finances for all organic, energy..which I haven’t had any in a couple of months now, renewed hope and for my countenance to truly be joyful and thankful for all things I’ve been blessed with. Counting your blessings in the midst of trial really is some of the best medicine.