Here I am, you can take it or leave it.

Yes, it’s a long one. But it was a necessary one to write. Maybe not for you to read, but it was very necessary for me to get this out. But before I start in on anything I was to first thank my sister for coming today to spend a few hours of bed visitation with me. It was so good to see her, such a good thing for me to spend time just laughing with her, even if I did get tired! I’m having to realize how hard it is for me to have people because I hate the idea of worrying people. So, even though I know they aren’t expecting me to be the hostess with the mostess right now, I just have a hard time being seen as “weak” and I end up moving around or trying to walk more than I normally would. Sad that I still fight this battle within myself even around those who love me enough to come crawl up in my bed just to be with me.

I want to be positive all of the time. But the desire to be constantly positive, always upbeat, is an unattainable goal because I am only human. So, I’m writing this because right now I haven’t been feeling positive and when I write God seems to reach me easier. Perhaps because I am having to listen to my soul when I write, perhaps because everything else has to be quiet so His whispers can be heard, or perhaps because writing is how I deal with all of this and God knows that better than anyone and uses it in His own way.

I want to be positive all of the time, but some days I simply fail at that. Whatever disease(s) I am fighting, they are so strong. They take so many things away from me that when I think about all I have lost, all that I can see slipping away from me, I can’t help but lost my positive attitude and just cry. I’m not writing this for you to “feel sorry for me”. It’s just me being honest and perhaps a way for people who don’t know what I’m going through to get a sense of it all. Yet understand that it’s hard for me to write about this because writing it makes it more “real” to me and I’ve been avoiding this particular reality for a very long time now. So, forgive me if the beginning of this sounds down, or depressing. Although in all honesty, why am I apologizing because I am not forcing you to read this, right?

The most difficult part to understand about what I’m going through is all of the symptoms. It’s not just that there are so many symptoms – and there are – but the weirdest part is how some of the symptoms will change suddenly while others remain pretty constant. For example, some of the constants are the pain (bone pain, joint pain, and/or muscle pain), my heart issues (beating too fast, too slow or just irregularly), the heart seems to add to the pre-existing exhaustion, and then brain issues (including both the central nervous system & the autonomic nervous system). The symptoms that “come & go” are really weird to me. For instance, some days I can’t work with my hands well and they hurt. It makes typing difficult and holding or grasping anything is tricky at best. Some days my hands don’t hurt as much and I have a greater range of motion and seem to have more strength in my grip. There are the days where I can walk normally, albeit slower, but normally. Yet, it’s getting to be more often than not that I can’t walk well. My balance is not good and I have trouble navigating the 4 steps from my bed to my bathroom without bumping into the door frame. I hate having mobility problems because it just makes me even more dependent on having help. The days when walking and grasping are hard are the worst physically because not only can I not walk to the kitchen to get my bottle of water, but I can’t even open it myself. I was knitting a lot over a year ago and that has been pushed aside because my hands aren’t able to handle that. Then of course there’s the weakness because when you lie in bed all the time you will get weak – period – end of discussion. Lying in the bed becomes painful because my body is so uncomfortable that any pressure on me hurts. I’m constantly shifting positions only to realize that it’s not the bed I’m not comfortable in anymore – it’s my own body.

Now, that stuff is hard to deal with, yes. However, it’s my brain that really gets me. My ability to think clearly is fading overall but there are “good days” and “bad days” with that as well. When your central nervous system is being attacked, many things can (and often do) happen. The muscle spasms, the uncontrollable twitching, and “the shakes” could all be part of that. The part that is the hardest to overcome is the mood swings – they are frequent and completely without reason or warning. Happy often gives way to mad or sad in just a few moments leaving me confused as to why I’m suddenly upset. When this happens I find I get angry too. Not because my mood is changing so quickly, but because as much as I want to control it, I can’t. I can apologize for it, but I can’t seem to change it. I can often see that I am having an “inappropriate emotional reaction” but am powerless to stop it and that is more frustrating that the mood swing itself. All in all, each day is simply a mystery to me and when I wake up I may be able to tell if I’m going to have a good morning, but I cannot count on that lasting through the whole day.

All of this is hard on a self-confessed “control freak” and I’m trying to be positive – trying to just go with the flow and accept what is happening to my body as part of a process. The bad thing is that was much easier to do when I was having enough “good days” to fool myself. My old definition of “good days” are those I was having a month ago when I could get up, get dressed and perhaps just drive to Walgreens for a small errand. I wasn’t leaving the house looking like a beauty queen, most days I didn’t even attempt makeup. But I was leaving the house under my own steam and that felt good. But then I realize that four years ago I was working a demanding job at a brokerage firm every day. I was on the phone so much that I had a remote headset so I could be walking around the office & still be able to answer my phone. I worked so much that in 4 years I never took a single lunch break. So, understand that all of this didn’t happen all at once. It happened slowly – it was a “sneak attack” in many ways. And I think what’s been upsetting me more lately is that I see that my definition of a “good day” must change yet again. “Good days” are now days where I feel like having conversations and where I walk into the kitchen without any help and get my own water bottle and I twist the top off by myself. The days where I feel like taking a shower are more like “amazing days”. I think back to 4 years ago when I was getting in the shower, getting ready for work every morning, and then coming home and cooking dinner. I simply can’t fathom how on earth I got from there to here. I can’t imagine doing any of that anymore, but I sure wish I could. Looking back I wish I could take back all the stupid statements I ever said about hating going to work, or hating to clean this house, or hating grocery shopping. Now I would give most anything to be able to do any one of those things – I would LOVE the idea of feeling productive.

So, I’m being forced to define a new “normal” yet again. I’ve never been the healthiest person, during school I caught any infection or virus the other kids were passing around. The difference being that it would knock me down twice as hard and take me twice as long to recover from. My “normal” has always been different from everyone else’s. Yet, this is the worst I’ve ever been by far. I’ve never felt this weak, this exhausted, this helpless to help myself. I feel trapped in a body that is unable to do any of this things I want to accomplish. This is my new normal.
I want to be positive all of the time, but unfortunately, for the past few days I’ve failed at seeing any of it as positive. Today I allowed myself to have that cry because #1) I couldn’t control it and #2) because I think I would be insane if I didn’t. This isn’t just a hard physical journey – it is an almost impossible emotional one. I’ve been told that my hormone levels are “out of whack” then add the fact that my central nervous system is unable to send the proper messages and what you have is one crazy, upset, exhausted, me. Yet, just knowing all of that does bring “some comfort” because it helps me understand that even though I don’t want to be crying, my brain isn’t receiving the right signals and it’s literally out of my hands.

What I am experiencing now, for those of you who know me, is not the same as when I was diagnosed with narcolepsy. It’s not the same as when I was diagnosed with “some type of auto immune problem”. It’s not the same as when I was diagnosed with dysautonomia, or candidiasis, or any of the other numerous other things. It is worse and it scares me because as it gets worse, I get more desperate to stop the progression of it and I have no weapon in my arsenal to do so. I only have the hope of Kansas City and the hope of a doctor who will finally find ALL of the things that are going on in my body. And Kansas City is SO CLOSE NOW! Just 2 weeks until I am there and I promise you I am elated at the mere thought of that! But I’m scared too. I know that I should not be scared but as much as I don’t want to be, I am. I am scared because I am only human.

At one time I had almost let myself believe that I must not be “that sick” if all the doctors couldn’t give me one diagnosis to explain all of my random symptoms. I figured if they couldn’t agree on what was really wrong, maybe it just was something I would learn to live with. I have learned that doctors don’t always know everything though & that’s quite a valuable lesson to learn. Because when your body keeps sending you signals telling you things aren’t “right”, you should listen. And if doctors tell you everything is okay but you know your health just continues to decline, you shouldn’t listen to those people anymore. I was at a loss as to where to go when God got me back in touch with an old friend from high school – one who has been instrumental in helping me find the doctor in KC. How very thankful I am to you Christy – you’ve been amazing.

There was so much I didn’t know about Lyme disease or other “vector borne diseases” (diseases that come from insect bites). I didn’t know they could change your entire life. I now know differently. If any of you are interested in learning more about Lyme disease and the medical controversy surrounding it please check out the documentary film, “Under Our Skin”. Their website is www.underourskin.com and it’s a great film. It’s won awards based on just it’s merits as a good movie – not just because it’s dealing with Lyme patients. In fact you can go to the site & click on "Interact" at the top & then on "View Feedback" to read other people's personal stories of how this disease has changed their lives. The movie was a wealth of information for both me and M though. We found out that when people are diagnosed as having “late-stage or chronic Lyme” disease, it’s not just the disease they have to fight. They must fight many doctors who don’t even believe there is such a thing as “late-stage/chronic Lyme”. They fight an established medical community who refuses to see people who get better as scientific proof that treatments outside the realm of the “established medical guidelines” have brought countless people from suffering horribly to finally making it back to the “land of the living”. I don’t know for certain that I am dealing with Lyme yet but have found out that there are no really reliable tests for it and that the diagnosis is made by looking at lab results along with the clinical presentation of symptoms. If there’s anything I’ve learned during my illness it is that doctors like looking at lab results with their neat little numbers and their “normal ranges” and they tend to give those much more weight than the patient who is clearly sitting in front of them in pain, scared and looking for some sort of help. That, my friends, is why I am having to travel all the way to Kansas City to find someone who can help me fight whatever bacteria that has set up residence in and around my red blood cells along with any other diseases that are lurking around in my body.

I know I’m writing a lot right now. But like I said before, I’m not making you read this. You can quit. But I cannot quit writing it. I have to do this whether I like it or not because SOMETHING is going to come out of all of this. I will not spend this time in vain, just waiting for my turn in Kansas City. I believe God is good – I say it repeatedly because I believe it’s something we all should focus on. He is good, He is merciful, He is my salvation, and He is using this awful thing in my body to help change me in so many profound ways.

So, yes, I want to be positive every day. Funny thing is the only way I seem to be able to truly manage that is when I STOP focusing on hurtles I have to overcome, or the ones I have yet to even know about. The positive feelings only come when I focus on GOD. It is through my faith in Him that I know no matter what the outcome of my personal battle, He will use this for His good if I allow Him to work through me.

The best thing you can do to feel better about your own situation is to stop thinking about yourself and start thinking about other people. We all get caught up in our own lives, in our friends and families lives, and we can often forget that no matter what it is that we are facing – there are people out there facing something much worse. My prayer is that through all of this I NEVER forget that.

I will end with the best “positive thinking” I know to give which comes from God’s word and the first verse I came across I actually liked the NRSV translation better than the NIV:
“Let no evil talk come out of your mouths, but only what is useful for building up, as there is need, so thatyour words may give grace to those who hear.” Ephesians 4: 29

So I hope that even in the throes of my negative day that somehow God uses something I wrote to build you up. That He is able to work through me to give you some type of grace. And for me, the following verse from the NIV is exactly what I needed to focus on in my “downer mood” and it does lift my spirits more every time I say it:
“The Lord is close to the brokenhearted and saves those who are crushed in spirit.” Psalm 34:18

I want to thank you Lord for being close to me and for coming even closer when I cry out in desperation to you. I know you hear my cries and I think that is sufficient to get me through my “bad days” knowing that you have many “good days” planned for me on the other side of this journey.