Frankie & Chloe

Frankie & Chloe

Sunday, February 25, 2018

Living With Lupus: A Litttle Autobiography

So, I thought I'd write a little about myself, so if anyone reads my blog they can find out a little about me. I was born in Texas, but we moved to Idaho when I was still pretty little. I've now been in Idaho for about 32 years. It's a great place to live, and no, everyone does not grow potatoes in their backyards. Ha ha! We have close to 50,000 people in our town. As a teenager, I had a lot of problems being sick a lot. After several years of seeing just about every doctor in town and having every test known to man-kind, I was diagnosed with lupus at seventeen and another autoimmune disease called sjogrens syndrome (dry eyes/mouth). I had to spend a lot of time in Salt Lake at the University Hospital because we didn't have any specialist here that could help me. I missed several months of school (junior year), but once they found the right meds for me, I got back to a some what normal life. Having lupus did make me have to grow up faster than most, but having God in my life kept me positive. Lupus mostly effected my skin; it effects everyone differently. I ended up getting bad sores on my legs, hands, and arms (similar to diabetic ulcers). I had a very difficult time fighting infection, so I hsd to go to Boise and see a wound specialist. I had to endure a lot of pain and suffering with all of it. The doctor would have to clean them with a scalpel and I had a ton of skin grafts. I also lived in Boise for a month to do hyperbaric oxegen therapy. It helped, but the skin grafts were the best treatment. I did lose my big toe on my left foot and have horrible scars on my legs and arms, but have after a couple years of all this, I finally quit getting sores and then sort of went through a time of remition. I did end up have knee surgery when in was 21. Years of taking prednisone depleted my bones and they had to do a bone graft. The graft didn't take, but it was in there good enough, that I could go a few years before a total knee replacement. They did not want to replace it since I was so young. I went on with life. I worked at a dental office and my boss was knew my situation and was awesome about me having surgery or if I need to be off because of my illness. I started working there when in was a senior in high school. I did filing and helped out with whatever they needed. A couple of years later, they needed someone in sterilization, so I did that full time after I graduated. I decided to go into culinary arts the next year, but still kept my job at the dental office. I absolutely loved my job and loved cooking, so I did both! A year and a half later, my knee quit working, so I had to get it replaced. I only needed one more semester of school, but just couldn't do it. I had my surgery and went back to work as soon as I possibly could. We ended up having a front office position open up, so I took over. I also learned to some dental assisting, xrays, and other stuff. It was a really great job and I loved it so much! My orthopaedic surgeon told me that this knee replacement had to last because I could end up having my leg amputated if the knee replacement didn't last or if I got an infection. Well, about 13 months later, I got a bad infection, but luckily they were able to pull out all the hardware and back it with antibiotics. I couldn't walk on it or out any weight on it for weeks and then went back and they out a new, much bigger knee in. In 2007, I met the most wonderful man in the world! We were married in 2008. He knew all about my health issues and also the fact that I couldn't have children. I had to have my fallopian tubes out when I was 19 due to endometriosis and lupus. I was heart broken when it happened. I was very much planning on having many children when I was younger. I babysat many kids in my teen years and loved babies, but my illnesses stole that from me, however, God put August, my husband, in my life. He already had two sweet boys from a previous marriage, so now I am "mom. We got full custody three years ago. I love these boys as if they were my own. I know I'm bouncing all over the place, but I've been through so much! So, about eight years ago, I ended up getting very sick and quit working. I was puking all the time and ended up weighing about 80 pounds (I was usually about 100lbs). I applied for disability and was finally approved after having a ton of tests to figure what was causing me to be so sick. We finally, after having my gall bladder out, found out I was having esophageal spasms. That was causing me to puke up everything. I got on the right meds and got back to a normal weight. So, I was good for about four years. Then 2012 rolled around and once again, more problems. I was very weak and having a very difficult time breathing. I was sent to a pulmonary clinic and found out I have pulmonary hypertension, and needed to be on oxegen 24/7. This was a very upsetting thing for me. I have always been a very active person and this really brought me down. Luckily, with the help of my husband and family, they reminded me that God gives us trials, but we can over come them with His help. Romans 5:3-5 says, "Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; 4 perseverance, character; and character, hope. 5 And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us". After about six months on oxygen, I was still very sick. My husband took me to the hospital and they immediately admitted me. Unfortunately they had no clue what was going on and they thought I was dying. They contacted the University of Utah hospital and life flighted me there. They ran test and I seemed to get better, so I was only there for two days and they sent me home. Two days later, I was not well and had major swelling and red hot skin in my right leg (where I've had my knee replaced twice). My husband ran me to the hospital and once again, I was life flighted back to SLC. I had gotten septic and I truly was dying. I had been so weak and atrophied that I could no longer walk or hardly move. They had to pull out all the hardware in my knee and clean it out. I was super lucky though, I didn't loose my leg and they got me there fast enough that I got the treatment I needed. However, I found out I now have many autoimmune diseases, like 8 or 9. Most of them I can't even pronounce like,ITP. I also got a bad sore right where my Achilles tendon is because the knee brace they put on me was rubbing. It was terrible! I had to have intense wound debridment and major skin grafts done,but after time, it healed. I also ended up having to stay in a rehabilitation center at the University of Utah, once they got me feeling better. It was intense therapy. It was three hours a day and they worked my butt off! It was really tough to have to be there so long. I missed my family so much. My kids were in school, so I didn't get to see them at all while I was away. My husband was able to be there quite a bit, but he also had to work. It was a huge motivation though. I knew I had to get walking and moving if I was going to go home, so I did. I worked harder in those three weeks, than I think I ever have before. And sure enough, I was released right on time. So, it took a while for me to actually be back to normal, but every year since that, I've just gotten better and better. My heart has almost gone back to its normal size (pulmonary hypertension cause it to enlarge) and I've even gone deer and elk hunting the last two winters and played some golf last year. Isaiah 41:31 says, "31 but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." This is one of the many verses I try to remember when I'm sick or not feeling up to par. Someday I will be in a perfect place, Philippians 3:20-21 " 20 But our citizenship is in heaven. And we eagerly await a Savior from there, the Lord Jesus Christ, 21 who, by the power that enables him to bring everything under his control, will transform our lowly bodies so that they will be like his glorious body." I cannot wait for that day, but I will be patient because I know there are more people around me that I can tell the gospel to and hopefully they will listen and be saved. Without God, I don't know where is be today? I've had so many people over the years ask me how I always have a smile on my face and I tell them, it's because of the one and only true, Jesus Christ our Saviour! Thanks for listening, I know this is a long one, but I really wanted to share my story. If anyone had comments or questions, feel free to leave them. In fact, is love it if you would. God bless you all!

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