365 days

365 days and a picture is all it took for me to realize just how much I have declined in health. Yesterday was picture day at school. I didn’t think anything about it until later that evening as I posted my picture on social media. After I uploaded it I just kinda froze a little bit. I remember picture day last year – I was walking. Yes, actually walking long distances and my body wasn’t in as much pain. I was using the scooter and my wheelchair for long walks. I was tired but not anything like I am now. It’s almost as if all of those symptoms have been doubled in a year. In the course of those 365 days I lost many things. I lost the ability to be able to walk into my house. Going up 4 little steps caused me to pass out and fall and get sick. My church built a ramp for me to get into the house which mom pushes me up in the wheelchair. I am so thankful for that ramp. Also sometime in that 365 days I had to become so dependent on the wheelchair and scooter. I could no longer walk around the classroom. I was told by doctors that I needed to rely on them more because I was falling so much and my body was getting too overwhelmed and couldn’t handle it. I couldn’t wash my own hair anymore. My fatigue and insomnia were getting worse. In 365 days I added 7 doctors that I was referred to see. I was getting some diagnoses. I had lost so much of my hair and eventually had to cut some off because it was getting to be too much. I also had to give up working all week. I can only work 3 days a week now. I get so worn out now. A doctor appointment wears me out so much, before I could handle those. Any little event wears me out. In the mix of those days I had really rough low days. I lost some friends and my social life pretty much went down the drain. My social life consists of doctor appointments and work. I do fun things with people every once in a while. Mainly because I can’t go out everyday or let alone every weekend. I spend my days laying on the couch watching TV.  In these days I learned so much about the medical field and learned new things about medicine and health, which isn’t something I wanted to learn. I learned that my body was in fact a mess and slowly taking away things I loved to do. I remember last fall Mom was helping me go through my room. I had to get rid of so much stuff  I couldn’t do.  It was too hard for me to keep staring at that stuff reminding me that I can’t do it. So we packed up a box and stored it somewhere out of sight ;). In one year I had to get rid of so many clothes because my skin couldn’t take certain textures and weights of clothes. I also had to get quite a few medical things. I would also try many medications and get my cocktail of medicines just right. I also learned that having constant spasms, my joints getting red and warm, swelling of arms and legs, and rashes, swollen lymph nodes, horrible headaches, exhaustion, dry eyes, sore throat,etc… would become my normal. I also learned that doctors do not know everything.  They are human, and auto immune diseases are a pain in the butt to diagnose and find. I also would become really sensitive to sounds and smells. I also learned that when you have chronic illness/pain insurance can’t stand you and they don’t want to help.  It’s rare to get answers/diagnoses for why you feel the way you do. One of those days opening the fridge became quite a task and I don’t really do it anymore. I don’t drive anymore I miss it though! I knew I was declining this year and my doctors knew it too but when you look back it’s so much easier to see just how much your health has complicated stuff. In 365 days I realized how tired I am of getting asked how I am feeling and if I am doing better. The answer is the same not much improvement and I don’t feel good but sometimes I just reply okay because I am too tired. I also learned how much I used to take for granted. In 2013 when Dad passed away I learned that memories and the way you treat people are important so make them good. He taught me to be thankful for little things even if life is rough so I try to live up to that. Every night I try to reflect on one thing I was thankful for that day. The things above are things that I have lost in a year, but next are things that I have gained in a year.

          I have learned to truly be thankful for the little things. I should have been so thankful for being able to: drive, walking/running , shower, getting dressed, etc before I got sick. One thing I am thankful for is family. I have all the support and more from family.  I am thankful for the little steps I can still take and the fact that I can still work. I can’t wear makeup anymore not even for a little bit so I became thankful to appreciate the natural look even though at first I was so upset I couldn’t wear makeup, but now I don’t think about it much. In those 365 days I rely on God a lot more. I read verses a lot, listen to songs, and read my devotional. I am thankful for that. I am thankful that I can see, talk, hear. I appreciate weather when it cooperates ;). Even though I have a lot of doctors I am thankful for them even though I can get frustrated  at times :). They help me and try to make me feel better and they are on my side. Even though things in this world can get messy and crazy it can also be great. Just remember a lot can happen in 365 days so make each day count and try to find one thing to be thankful for everyday.

“And whatever you do, whether in word or deed, do it all in the name of the Lord Jesus, giving thanks to God the Father through him.” Colossians 3:17

September 2016

September 2017

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