Friday, June 22, 2012
Today, June 22, one year ago I lost a very dear friend to a blood infection and this started a downward spiral of heartache for me. I attended my friend’s funeral on the following Tuesday, and then on July 6th my very best friend died and then on July 13th I found out about another really good friend that had passed and then on July 20th I found out about another really good friend that had passed and then on July 28th I learned that my cousin had passed. That was sooooo overwhelming and the grieving was out of control. That was 5 people in 5 weeks. Then just about 4 weeks later I learned that I have a genetic disorder that explains all of my aches and pains and the disabilities that have kept me from being able to live my life like I always thought that I would. I had never heard of that disease, Ehlers Danlos Syndrome, but once I learned all about it, I am still learning, I began grieving for my lost life as well because I knew that I was not going to get any better than I am now and most likely I will decline even more.
My Sweet Sweet Best Friend Cindy!
I am a missionary and my dream since the age of 3 was to go to the mission field and I felt God calling me to do that when I was 9 at which time I committed my life to serve God as a missionary. Seven years ago I moved to Nigeria and although my body hurt and it was very physically challenging and really really hot, I was living my dream. I am back in the States now and I am very very sad that I will not be able to return to Nigeria. I know for sure that if I can't even go to the grocery store for 20 minutes without nearly dying then there is no way I could make it in Nigeria. I know there are other missions that I could do but I am tired of hearing that, I would love to hear from someone who says, "I am sorry that you aren't going to be able to do what you believe you were created to do, that must feel sad and scary and be a hard thing to face....." I know that folks just want to encourage me, but not a single friend has said that to me, they only tell me how much I can do missions here but they don't understand that I can't even stand more than 5 minutes to wash dishes because I am in so much pain and I am so dizzy all the time. I don't know how they think I am going to "save the world" like that?....lol.
I was told the other day that I had just given up on life once I learned the name of a disease that I have. I was also told that I had lived with this my whole life so why does it have to be different now just because I know what it is called. Well, that is right, I have had this my whole life and now that I know what it is it helps me take some pressure off of myself because I have always been very hard on myself about why I was not better at this or that, or why I didn’t have the same energy level as everyone else, and If I would have done this or that better than I would not be hurting all the time. Guess what? None of that is true, it is not my fault that I hurt all the time or that I don’t have enough energy to sit up all day without having to lay down. The lesson that I have learned this past year is that if I would have listened to my body way back when, when I was hurting and tired and what not, then I could have paced myself and maybe I would not be so disabled now, and maybe not, but the fact that I know what it is called that is wrong with me does not mean that I have taken that as an excuse to stop living.
Those who know me know that I am a people person to the max. I love being around people, I thrive being around people and because I can no longer do that like and when I could before, is very hard on me. I have lost so many things…… Also, those who know me know that it is a huge great deal that I am taking time to rest when I need to and to ask for help when I need to and to not push through the pain realizing I am damaging my body and my future. I am not the best with self-care for lots of reasons, but now I am forced to take care of myself and even that is a reality check that I am not comfortable with.
All in all this past year has been lots of up and downs and discoveries both positive and not so much and there have been many many days that I would have traded places with any one of the 5 people I lost as I know they all were believers in Jesus and are all in heaven. I have been extremely suicidal this past year and even now I am not real excited about being alive all the time. When you have a chronic illness, that is bad enough, but when you have a chronic illness that no one can see that is even harder. If I were bald from treatment and dragging around an IV pole then I would get phone calls of prayer support and people would bring me potluck suppers. But that has not happened other than just a few very dear friends praying for me…. Which I am soooooo thankful for.
I wanted to share this today because I am feeling very sad at the loss of my friends and I am also very scared because I don’t want to go through another season of such great loss. I know that we never know when we will get news like that but I am not finished grieving my friends or my life and to think of any more of that scares me.
The only hope I have is in Christ and my faith in Him and that I know that no matter what, I will spend eternity with Him and my friends and family!
Thursday, June 21, 2012
My whole intent of starting this blog was to help educate myself, my family and my friends and maybe even some healthcare professionals about Ehlers Danlos syndrome (EDS), Postural Orthostatic Tachycardia Syndrome (POTS) and several other things that I deal with as a result of Ehlers Danlos. If you don't already know, EDS causes lots and lots of pain 24/7. You can never escape the pain and many times I have major brain fog and I just can't think well and words seem to be missing from inside my head. EDS is something that is life altering because of the pain, for starters, but frankly I am used to a certain level of pain and daily that pain level goes up with dislocations and subluxating of my joints, but POTS is what I believe is causing my life to be basically unlivable in any way that I have lived life in the past. Below is a video explaining what POTS is and what it does to your body.
Well, I don't know where good intentions really get you but anyway, I haven't really felt well enough to write lately. So, even though I don't feel great today, I sure feel better than I have in a long time and that is because I have been getting IV saline fluids twice a week now for a few weeks to help with the dehydration that POTS causes.
Most people's bodies are made up of about 70% water but people with POTS are usually anywhere from 30-35% dehydrated in their bodies. In this case, you can never drink enough water to make up for that difference so sometimes, especially if you live in a hot place like I do in Texas, you need some extra help with hydration. I go to a local hospital to their infusion room, where people get chemo treatments, blood transfusion and all other kinds of meds, to get my fluids. I get two bags twice a week and because my veins are small and not so sturdy, it takes a long time to get the fluids in. Usually, it takes about 4.5 hours to get the whole two bags in. That seems like a long time but I must confess that the infusion thing is not a bad gig.... I get to sit in a really comfy recliner with a warm blanket and each chair has its own personal TV. So I just push back, get warm and watch TV or read or listen to my IPod or my favorite thing, I sleep! The only part that I don't really like is getting stuck for the IV.
The pain of the stick is usually brief at first unless there is digging involved, but I think the stick activates my nerve endings or something so I kinda get achy for the rest of the day, that would be achy on top of my normal achy. It usually takes about three sticks but on occasion, I get by with just one stick. The other day on a Friday I had infusion done and that was 3 sticks and the next morning I had to get a blood test done and that was 5 sticks with no blood, in the end, so they told me to come back on the following Monday and that was 5 more sticks and yes..... blood... but they took 16 vials...wheeeewww... I didn't think I was going to have any blood left.... and then the next day was infusion again and that was 3 more sticks because the blood test stickers had used and messed up all the veins for sticking I had in my arms....lol.....
Anyway, that was 20 sticks in four days! All I have to say is Thank Goodness I don't have to get blood tests done that often!!! A funny thing that also happened on that Monday was that I went to the eye doctor and of course they dilated my eyes without telling me beforehand that they were going to do that so I didn't take anyone along to help drive me home. I had only had this done one other time and it was the worst experience I have ever had with my eyes, ever... it was a year ago and of course, I was not told this would happen, and I can remember not being able to see even to the front end of my car. It was only by God's Mercy that I made it home without running over 6 people. Anyway, I was really concerned about this because I was worried that I would be driving like a drunk person and if I were to have gotten pulled over and the police officer would have seen my arms with all the sticks, which look like drug tracks, then I knew that I would not be able to convince them that I was not high on drugs but rather I had just been to the eye doctor. I call a friend who I thought had the most money to get me out of jail and told her just in case......Again, God was smiling on me that day because not only did I not get pulled over, but the dilation was not nearly as bad as the first experience. I was able to tell the doctor that last time was awful and he used a milder form of drops this time. What I learned? Just speak up and let the doctor know when things aren't going well for you and most times they can help you out and confirm dilation!
Onward I go.....I wanted to post a link to a video on YouTube that I found that explains what living with EDS is like. There are lots of videos like this and I am glad that people have posted their stories because it helps me understand myself better and it helps in explaining to others that one, I am not alone nor am I making this up, and two, it gives others an idea about what my life is like.
This is The Spoon Theory! This is a great way to explain way living with a chronic illness is like.
Here is the link to the video on EDS
And here is a link to explain a little bit of what POTS is and how it can affect the body.
Come Back again to learn more about EDS and POTS and the rest of the problems that EDS offers.