09/03/2024
If you have a friend or in a committed relationship with someone that has chronic health issues please please please
Do not commit to being there for them and not be there. understand that that person may not be able to do anything for themselves for weeks. And when they depend someone to be there for them and their not it can turn their life upside down
My story....
I didnt ask for my body to fail. And when my doctors couldn't figure out whats wrong they made me feel like it was all in my head. But the pain is real and the shortness of breath cant be denied.
So they scheduled me an appointment with 3 or 4 specialist because this is out of his "pay grade". And then I had to wait 4 months to get into the specialist. In the mean time I was in pain, hard to walk or stand, unable to breathe, exhausted and reminded of the many changes in me for no reason or apparent reason. Not being able to do important task at work that only a year before, I had no problem doing. I am an active, productive and ambitious person and to all of a sudden not to be able to do those things without assistance is very debilitating emotionaly. Always pretending to be doing better than than I am until it no longer works and people notice something is wrong. Lack of motivation, wanting to lie down, taking medication that doesn't work, having a whole pharmacy on top of the nightstand. And then the 4 month wait is over and the appointments with the new doctors and series of test begin. And no matter how strong I think I am or want to be. How much I have prayed because at this point I still didn't know what was wrong with me. I felt so vunuarable waiting for the news.
Then the moment comes when they tell me what I have . 3 terminal lung diseases, plus an autoimmune disease that makes it hard for me to get rid of infections. Accute neuropathy and an out of socket ankle that has fused that way. The ankle can be fixed. But the other is with me for however much time I have left. I find have mixed feelings: I'm unusually calm, I kinda have a peace about it, I finally know what I have, but how do I deal with it? How am I suppose to feel , what am I suppose to do. What does God expect me to do. So I do the only thing I know how. I pray..a lot. I know God isn't done with me yet and as crazy as it sounds. I know there is a blessing in all this.
But then I had to begin the process of letting friends and family know.....and after that initial talk with each of them5, cricketts just dead silence. ( Except my mom) I knowb nobody knows what to say to someone in this condition. So they shy away. And I totaly get it. It's a reality nobody wants to talk about, including myself.
The truth of the matter is, this a result of the lifestyle I led for 40 years. The damage was done a long time ago. I did this to myself. God has blessed me with a pretty clean life for the last 18 years and has allowed me remain fairly healthy during that time, It just took 18 years to catch up with me.
This is my truth and that's why I'm sharing it! And also to stop any rumors that are floating around. A lot of people could sence something was wrong, but did not know what it was.
So they begin to assume things and usually the wrong things.
People don't understand
Silent and invisible diseases do exsit. I have been sick for a long time. Nobody including myself really knew it. And by the time it came to the surface and became evident, it was pretty much late to do anything about . However, I am not giving up, I know God has this. I have the best team of Doctors from Washington University I could ask for. They assured me they can increase my life expextancy and more importantly my quality of life with these cutting edge treatments they have me on. I have to say they have helped a lot and I have seen a great deal of improvement. So I have commited to doing whatever it takes to stay active and live life and enjoy the best God has for me.
I just need people to understand that:
*I move slower that I use to and I'm late for everything, but thats nothing new.
*I am not lazy, but I know I appear to be
* I am not angry but sometimes cranky with pain and can seem a bit snippy.
* And sometimes my beathing and hacking can be a bit annoying. So if you can overlook those things you will see me no different than you saw me before. My biggest fear is people treating me different and me becoming a burden and dependent on others. So I am praying for complete healing. But , I am also praying for the lesson and blessing God has for me through all this to be revealed to me sooner than later.