Just a girl blogging about her life with a chronic illness

Just a girl blogging about her life with a chronic illness

Tuesday, October 7, 2014

5 Years Down

Last week was my 17th birthday, which was my 5th birthday being sick. For those of you who don't know, I got sick about a week before my 13th birthday. Although we are figuring out now that what I have is a genetic condition that I have had since birth, my symptoms were elevated and became more apparent after I got Mono and basically just never got better. Lately we've seemed to have most of my symptoms managed enough to where I can live my life pretty normally. Ive been going to physical therapy almost every week for a couple months now, just to manage my joints and prevent future problems, and occasionally to try and fix my joints that give me more problems. EDS causes me to constantly sublux my joints and sometimes even dislocate them. So going to a physical therapist regularly helps a lot.  Even though I constantly have pain in my joints and muscles, I try to not let it slow me down and affect my day to day life too much. As far as my POTS is concerned, I'm taking a medication that is supposed to help my body retain salt, and I'm also taking salt pills. My doctor also told me to eat as much salt as I can…Im not complaining. I will get dizzy and my heart races, especially if I forget to take my meds, but its not near as bad as it was before. For my CFS and just overall fatigue, I started doing Methocabalamin injections every 3 days. Methocabalamin is a form of B12, and it is magic. I wouldn't say I have crazy energy, but I now have the energy of a "normal" person. I went from having to take a nap almost every day and crashing after small activities, to being able to go out and enjoy time with my friends and family and maybe take a nap once a week. Its amazing. I have even had energy to dye my hair multiple times, which is something that I love doing. But because of recent law changes in how they compound the methocabalamin, and people messing up the shipping, I have not had in injection in over a week and I am exhausted. Im back to napping and being extremely fatigued, but they should be here thursday so thats good.. This post was just to update everybody on how things have been going, and I'm planning on posting blogs a lot more often. I am in my senior year of high school and I'm trying to figure out my health before I can decide on what to do after high school. Hopefully we have everything figured out and have my health under control so I can go to college next fall. Thank you to everyone who as encouraged me throughout the years I have been sick. It really means a lot to me.

3 comments:

Joanna said...

Your strength and courage during this whole journey has been inspiring. You have even managed to lift others up along the way, while you were down. Not every one gets it, but God does. Keep going to him first. -a proud momma

MamaFuller said...

I just love talking to you and I love seeing your attitude of life. You are a treasure!

Unknown said...

Thanks for posting and updating us. I remember the original post - hard to believe it has been so long ago. Remember, it is not our chronic pain that defines us - you are defined by how cool a person you are and what is in your soul.

I am not trying to compare my chronic pain to yours - mine is no where near as severe. But I work every day to make sure that I am not defined by my arthritis. I loved the line above in your post where you wrote "i try not to let it slow me down or effect my day to day". Bravo!!

Have a great Senior year.