I will start out with a positive story though. Four days before I left for the beloved Salisbury I got violently ill, like passing out, vomiting, high fever ill and we ( mom and I) were for sure that not only was I going to have to postpone my long awaited trip to the bury but probably end up in the hospital. But miracle of miracle I got better like two days before I left. The day before I left I was pretty tired but just knew that if I could get to the Bury being there would give me the energy to get through it and revitalize me. The first day of driving was glorious. It was snowing and raining at the beginning but that cancelled some heavy duty road construction that usually doubles your travel time through Indy. Then once I was through that there was like that gorgeous beautiful rain that you know only God can provide with the blue sky and the glistening rain coming down through the pure white clouds and the sun glistening through it. It was amazingly beautiful, then I looked off to the left and saw a hawk flying through the air and that has always been to me a very spiritual sight. I remember driving on the way to my 3 month mission trip in Gatlinburg, TN and seeing the same thing and just feeling like God Himself was in that hawk soaring over me and protecting me on my drive and that is how I feel everytime I see one. They are so graceful and majestic and just awesome just exactly how God would be. Then I looked in my rearview mirror and saw seriously the most gorgeous, full, vivid rainbow that I have ever seen in my life. I wanted so badly to pull over on the interstate and take a picture of it, but that is generally frowned upon and I was making good time and wanted to get to the hotel before my body fell apart. But at that point, little idealistic, optimistic me was convinced because of the heaven ordained rain, hawk, and rainbow, and the fact that I was still feeling good meant that this trip to the Bury was nothing but God granted and completely supposed to happen.
Until like 4 hours later. When the illness came on. Apparently McD's french fries have a beef flavoring in their oil that has a wheat derivative in it and it made me SICK. Like pretty much the whole second day of driving was from Hades itself, I had to go to the bathroom around every 30 minutes which is not easy driving 6 hours on the interstate and it was raining and I was cranky and my muscles hurt and the whole reason I wanted to get to the Bury on Wednesday was so I could go to church and see people. And of course as soon as I got to Misty's house the illness came on further force and the vomiting and unrelenting need for sleep (like can't stay awake if your life depends on it) started so I of course could not go to church because I slept/puked my way through it. Then I was still like bedridden sick for Thursday and Friday. Saturday I managed to tell myself I'm only in Salisbury for like 3 more days and I am going to see people. So I got up, went to my celiac group Christmas party breakfast thing and managed to eat a little bit of food and see some of my favorite people in the world. Then I took a really long rest/nap and then managed to go and see the Living Christmas Tree that night. Sunday I managed to make it to Sunday school, church, and lunch and that was totally awesome. But then I rested for the rest of the day and didn't make it to the tree that night. But I did on Monday night and got to see people on Monday for lunch and dinner. Tuesday was a so/so day and I saw people for lunch and dinner but didn't do much else. Wednesday I was sick again (I think because I ate salad on Tuesday at Palms and salad doesn't digest well so it was totally my fault but it was oh so good). Thursday I was supposed to leave but there was no way I had enough energy and will power to drive for 6 hours so I stayed for one more day and left on Friday morning. Friday was an ok day of driving and Saturday was a good day of driving. I didn't eat out on this drive home at all except ruby tuesdays once I was at my hotel destination which has a gf menu. I just ate my home brought snacks on the road. No more McD's ever. Sunday I was pretty dang sick. I think it was the combination of trying to do so much in the bury and being tired and being back here in the cold and the not with my friends and a lot and the fact that it was the day before treatment and I always get sick the day before treatment...probably because I really need it at that point.
Anyways, I spent all of Sunday curled up in bed in immense pain with a high fever and at that point where I can't stay awake anymore so I was asleep. Mom was really worried about me, but I came through it and Sunday night actually slept the whole night through without waking up once to go to the bathroom for the first time since at least July. I was so excited. Monday was treatment day. I was going to a new infusion center and it is 2 hours away and I wasn't feeling good so mom went with me. At first when I got there I was pretty upset because it is an infusion center where there are like more than one person in the same room and me and mom were going to take care of some personal financial phone calls and trying to get stuff set up and Indiana state better and plus I didn't want other people knowing all my business...but it is what it is and it turned out to be a blessing in disguise. The only other person in there while I was there started talking to me based on what I was telling the nurse and told me that she has like all the same symptoms that I do and she has something called dysautonomia. One of my mom's best friends sent us an email last week asking if I had been tested for this rare disorder that hardly no one tests for called dysautonomia. That was 2 people in less than a week that suggested I got tested for it. This woman started asking me questions and it was like I was talking to myself. Her fingers and toes turn white/purple/go numb all the time; her arms and legs randomly fall asleep and/or are numb and tingly all the time; her heart races; she has night sweats; migraines; blood pooling; dehydration constantly; anxiety; low blood pressure; constantly dizzy; passing out...I mean all these things the doctors have never been able to couple together this woman had the same things and she has a diagnosis. I want a diagnosis. There is not treatment perse for this dysautonomia but it would be a diagnosis. I talked to her about day to day life...about the fact that I can't make it through the grocery store anymore without passing out and she said to ride the scooter...I said I don't want to I don't look sick and she said well let them look at you and then stand up and pass out. The fact that I can't stand up in the shower long enough to take a shower and she said that she uses a shower stool. Standing in line at the dmv or anything like that is almost impossible. Her hair falls out all the time too like mine does. I asked her if she works and she just kind of laughed. It was so good to find someone to talk to about how I felt and someone that believed that I could look this good and feel this horrible all the time. Someone that believed that there are these things wrong with me and more and gave me a list of doctor's that may believe me too. Even if I don't get diagnosed with this dysautonomia at least I know there are people that feel like I do and there is hope for finding someone that believes me 100% and may help me find out what it is for sure. She also gave me a lot of facebook pages and support group information on dysautonomia and some funny ones too that will get me through the sucky days.
The negative part of this is the closest of the 3 dr's that diagnosis this in my area is 4.5 hours away at Vanderbilt, then Toledo is 5.5 hours away, and finally Cleveland Clinic at 7 hours away. It also takes 7 months to a year to get an appointment at any of these places. There are many more expensive tests and it would definitely not be a one day appointment thing probably like a week or so and my mom would definitely have to go with me because the tests are pretty demanding and energy draining and I couldn't do it by myself. But I see a rheumatologist in January and hopefully they will at least be able to start some of the testing/diagnosis/ruling out process and get me on the right track.
Today was one of those sucky days. Every day I have so much energy when I wake up and lately it has been pretty scant. I can't stand up long enough to cook anymore so I've figured out how to do it sitting down for the most part. I empty the dishwasher and I am so out of breath and sweating it isn't even funny. I am getting weaker and I can't tell if it is because I am trying to hard to do stuff or if I'm not doing enough. I feel like I'm doing plenty because I am completely exhausted ALL the time and out of breath and sweating no matter what I do. The first horriblly suck thing of today was that we decided to let my car go back to the people today. My bill was due yesterday and I don't have the money to pay it because I used my last money to go to Salisbury and lay in bed for a week there...and they offered to defer it but I won't have the money in January either and we don't know when my disability will get approved and how much I will get when I get on it...so if we deferred it we were just delaying the inevitable. So I am now (or whenever they come to pick it up) carless and it sucks. I have had my own set of wheels for 10 years now and I know I rarely have enough energy to leave the house, but it has been nice knowing that I could leave the house because I had a car sitting outside and could just hop in and drive even around the block or something. Now I don't. I have to share with my mom until I convince my grandpa to help me out and get me a different one. I also found out that 2 of the classes I need for next semester are full and I'm not sure how to get into them. My muscles have been really acting like my potassium is low again, I can barely walk and it hurts like all my skin is tight when I do. Today is not a day I want to repeat again. It was bad.
But even with all the bad stuff that is happening right now...after so much affirmation had been happening I have to remember that my God said "I will never leave you or forsake you", He said "For I know the plans I have for you, plans to prosper you and not to harm you", "I am leaving you with a gift--peace of mind and heart." And two of my absolute favorites right now. Romans 8:38 "And I am convinced that nothing can ever separate us from God's love. Neither death nor life, neither angels nor demons, neither our fears today or our worries about tomorrow--not even the powers of Hell can separate us from God's love." And, like the story about the hawk above the story about the eagle from Isaiah and is so pertinent in my life right now: "He gives power to the weak and strength to the powerless, even youths will become weak and tired and young men will fall in exhaustion. But those who will trust in the Lord will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint." And in this verse I have hope and a promise from my God that He will not let me fall. He will never leave me. He will help me through this and He has the perfect timing for everything to come together. I know this. I just have to keep reminding myself of it constantly. It is not easy. Especially on the days like today. But God promised me that this would be beautiful and it would work itself out eventually. So right now I am standing on the promises of God and waiting...expectantly...which is kind of very appropriate for this advent season. Guess my advent is just going to be a little longer this year....or years...until my expectant waiting is over and God's promises come full circle for me. Whether the promised answer be yes or no...or wait.