Saturday, February 28, 2015

I'm Coming Clean About How I Really Feel


Am I mistaken that Jesus told us to pray for the sick and love one another as He loves the church?

If you are a pastor, or really even a church member for that fact, PLESASE, PLESASE, PLESASE, PLESASE let me say it one more time PLESASE, don’t forget these people or their families!!!!! Who or what am I talking about, well, read on to find out!

If anyone knows me or have known me for a long time then you know that I am a funny, good humored, outgoing kind of gal. If anyone really pays attention to me then they know that I can always find the bright side to anything in life and that I love to laugh and tell really stupid jokes and do just about anything to make others laugh. Sure I deal with depression, a lot, I think most people do deal with depression at some points in life, but I don’t let that rule me, guide me, or control me, at least I try hard not to let that happen. I am adventures and I love meeting new people and talking with old friends about the good old days and finding out what is new in their lives now. I have a very strong faith in God and I love to study the Bible more than any other thing on earth!! And speaking of earth, because we live on earth and not in heaven just yet, there are things that we all have to deal with while we are here and I want to share a little bit of what I have to deal with here. I am telling the above because what I am about to explain is tough and it may seem, once it is read, that I am negative, resentful, and down on life, I am not, I just need to get this truth out and share what I am feeling and be honest with my world with just a small bit of info about my life. Take it as you will, and I am not doing this to get apologies or pats on the back, I am just, for my own sake and well-being of mind and heart, sharing this out loud because I feel like it is time to do so.
I have mention before that I have a rare genetic disorder called Ehlers Danlos Syndrome that is very hard to live with and I am in constant pain 24/7 with nothing to help the pain go away but I haven’t carried on about it and I don’t dwell on it to others. There is no cure for what I have and it is progressive which means that things will get worse and not better nor will they go away, and I have lots of different illness that I deal with because the genetic disorder I have is a collagen disorder which means that I don't make good collagen and since collagen makes up 80% of the body that means that if affects everything from head to toe. When you have Ehlers Danlos Syndrome you never know what is going to cause a problem when. Here is just a very small amount of the things that I have because of EDS, I have a hole in my heart, and in both chambers of my heart the blood flows backwards before it goes the correct way and that kind of makes your heart feel weird at times. I have a condition where the rest of my blood flows backwards through my body so just standing up can cause a bucket full of problems not to mention bending over and even sitting still. Walking is very difficult for me because of the pain I have due to the way this disorder affects my joints and muscles. I have trouble concentrating because I have a condition called Dysautonomia which means that everything that your body does automatically, like breathing, your heart beating, the blinking of your eyes and so on, my body doesn’t do that so my brain is always having to tell my body to do these things and it turns my thinking abilities into mush by the end of the day not to mention the energy the body uses to thing that much 24/7. All of this started at birth for me but because it looks like so many other conditions it often goes undiagnosed for years plus most doctors have never seen EDS much less know much about it. In my case I only found out that I have Ehlers Danlos Syndrome about three years ago and it has changed my life knowing that I have it because it explains everything that has ever, I mean ever, been wrong with me. Finding out that I have EDS has given me a little bit of a peace of mind knowing that things that were seen as me not trying or me being lazy or not very smart and not losing weight were not my fault, but rather it was something that I could not control.

I started thinking about sharing all of this when I saw this show that I found about people with Superhuman strength. The show describes Superhuman strength being something that a person can do that no one else on earth can do because of a genetic mutation in their body.... the host has EDS and so does another guy in the show. I noticed that the segment about these two guys with EDS is so short if you yawned you would have missed that section of the show. What that tells me is that instead of this being a Superhuman strength..... it is more like a Superhuman freak.... no kidding, I have felt different than everyone else my whole life, not ever knowing why, and the most of what I felt and still do feel different about myself from others was mainly because I was made fun of my whole life, during school growing up, in college, and even now in public for being fat, and almost all of my doctors have ridiculed me for being too heavy when all along even my weight is caused from having a collagen disorder, way too much to explain how that is. If you have ever had a weight problem I am sure that you have felt this way or can relate to me in this manner. 

I was just different, and not a freak but life has a way of doing that to you, I mean making you feel like a freak in some way or another, no matter who you are. I do often wonder if my extended family and friends and Doctors would have known that my weight, along with learning disabilities, and my slowness in sports and my what others called laziness, which was only fatigue, and my inability to think and remember short term things, and my messy hand writing and so many more things, some of them too embarrassing to say and if no one  remembers those things why on earth would I remind anyone of them….  were all because of a genetic disorder that I could not fix or do anything about, would have been or even now not be so judgmental or would treat me with respect for fighting through it all, or at least with sympathy. I think I would be a different person today because maybe I wouldn’t have to deal with how much hate I have for myself because of my fat and overweight body and my poor grades throughout school which left me feeling stupid and being called stupid and what others see as laziness which in our society today is believed to be because of someone being overweight, and my inability to work and provide for myself the basic things in life. All of this from thoughts brought on by the way people called and still do call me names and make fun of me and judging my actions based on the size of my body, even up to today. I have to believe that all of these people that I have loved and still love would have been kinder to me. I know kids will be kids and I am not innocent of being a kid and saying and doing mean things and I sure hope that I never did anything to anyone to change the way someone see themselves into something negative.

As adult and finding out that I have EDS, which I have only known about for 3 years or so, I see that I have learned to compensate for what I am not able to do in life that others do naturally without even thinking about. For instance, jumping out of bed, getting dressed and going to places, that just doesn’t happen for me. I have to move slowly getting out of bed to make sure that all of my joints are in place and have not dislocated while I was sleeping, then I have to stand up and see if I am dizzy enough to fall or just dizzy enough to hold on to the wall to make it to the bathroom, and I have to consider how much pain I have to know if I have to wear a pull over shirt or if I can stand the pain to button a shirt not to mention how my self-esteem will falter throughout the day due to my uncomfortableness from being overweight.
As I have gotten older and my problems have progressed, my adult friends have not been so kind either. They forget that I can’t work and so I am either at the hospital getting IV treatment, the only thing that gives me a small amount of help for low blood volume and dizziness and my constant dehydration, or I am at home resting, unable to attend church or go to the grocery store without major consequences from the energy that it takes to shop and put the food away. I wonder if they understand that I grieve, a lot, about my inability to go back to the mission field and how I don’t even have enough energy to do mission right here at home? Suggestion are given to me all the time about how I can make a difference for the Lord on the internet or how I can minister to people right where I live and I hate to say it, but for someone with the type of illnesses that I have, no, it is not that easy. I often don’t have the energy to minister to someone, even over the phone much less muster enough strength to even plan how I could minister to someone, and if you do that type of work, then you will know that it takes not only strength and energy, but a giving of your whole self to do so and while that is one of my biggest desires on earth, that is just not something that my body can do anymore.

I also wonder if my friends understand how terrified I am about my future. I am about to turn 48 and my body acts and feels like what a 90 year old must feel like on any average day. I don’t have a partner in life or kiddos to help me out with things and my parents are no longer able to come to me when I need them so at best I am left always thinking about how I will get things done to take care of myself. I am a very independent gal, but there are just some times when you need somebody to be with you or help you. Why I get terrified about this is because at my age things are very hard for me and I can only wonder what my life will be like in about 10 yrs much less 20. Don’t get me wrong, I like living alone and I am thankful that I don’t have kids, because not only would I not want them to have what I have, but I could never even come close to giving them the life that I know they would want, need, or deserve.

All in all, I just can’t go and do things like I used to be able to do. I used to be able to push through the pain and fatigue but I just can’t do that anymore and when that happens others tend to forget about you. This is very common with people who have Ehlers Danlos Syndrome so at least I don’t feel alone in this.

It may seem that I am rambling on but in my mind, this is how it gets, my thoughts are kind of everywhere and it is pretty tough these days putting my thoughts together in a manner which they flow out easily enough for others to keep up with me. I am sorry for jumping around on topics, but, I needed to put them all down, well, at least some of them down for others to know that I do need pray and hope and encouragement and not forgetfulness or assumptions that I have nothing to talk about in life but my health. If asked how I am doing I am not going to lie anymore and say how great I am just because someone may not understand what is wrong with me or others may or may not agree with how I deal with things about my health. I have no longer been trying to and make others happy and not feel bad for me by lying about how I am doing just so they won’t have to hear something uncomfortable. This is a bad habit of mine, I do almost anything to hope I am making people around me happy when in reality I am telling a lie or I am injuring myself or damaging my health to keep others happy. Most likely I do this because I have a bit of a fear of being alone, which has not turned out to work, because I am alone a lot. I am not open to suggestions of what others think will help me. Believe me I have and still research all the time to try and find things that would better my health, nor am I open to phone calls that are made only when others need something because if people were really interested in being my friend then they would know that I can’t help out with most things, which I feel horrible about and I hate to the core of my being, I always want to help and knowing that I can’t is very very hard for me to deal with.  I am however very very open to calls or texts or messages to show me that I have not been forgotten or that I even exist. Being a people person like I am and not being able to be fulfill that need in my life is absolutely the worst thing that I deal with. Being stuck at home, with no contact from others unless I make it, is so lonely and hard on the heart that if seems that parts of me are dying.  I want to hear from people about how their lives are doing and what they are accomplishing and how the kids and family are doing and how I can pray for them as well.

One more thing that all of these thoughts remind me of is how our world has changed today. Everyone has busy lives and parents are running kids here there and yonder, but hasn’t that always been how family life is? If it is, then why have churches stopped reaching out to the sick, depressed, injured, poor and needy within their churches? I have noticed this in many different situations with friends and family that have needed church support but the minute that a church service is missed it seems like the church thinks the missing member is out on vacation, or is just not interested in attending there anymore. Why is this???? If you are a pastor, or really even a church member for that fact, PLESASE PLESASE PLESASE PLESASE let me say it one more time PLESASE don’t forget these people or their families!!!!! What a shame it is to see, for those I know that are in this type of situation, people who have served and dedicated themselves to teaching and singing in the choir and all kinds of areas of ministry, to just be forgotten when they become ill. Not even one phone call for some of these folks from anyone from their church. Am I mistaken that Jesus told us to pray for the sick and love one another as He loves the church? Boy, I am glad that Jesus doesn’t love the church like some church people love each other. I know that no one can be perfect in this, but for goodness sake, when did selfishness become so big and caring become so little? Just a word for churches reaching out to the sick, when a family has a sick member, in most cases, there are other family members there to help the sick person out. There may be kids involved and yes, cooking food to take to them is helpful, but they are not alone, there is usually someone there to see that everyone gets fed or taken places or gets basic needs met. With single people, that is not the case and even more so, singles without kids. I promise there is not an imagery person in the house taking care of the sick person, cooking for them or helping them get their meds at the drugstore or doing anything else for them. I not only speak from experience for myself but from watching others who have at some time in the past few years go through this very thing.

Ok, here is my bright side to all of this…. One, I know for sure that I am a strong person and I can deal with a whole lot. Two, things could always always be much much worse. Three, I hope that I have encouraged you to think beyond yourselves, I know that I have encouraged myself to do that. Four, thank goodness I learned a long ago to forgive others, we can only do what we know to do until we know better and have a chance to act on it.  Five, it takes a lot to keep an ol’ gal down and so far…. My heart is still beating and I still have enough oomph in me to complain so I know that it’s not over with yet, and….. Six, I have a great skill and many reasons to be able to laugh at myself often!





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