Prepared but scared...

Only one week until M & I get in the car and head out to KC! I’d like to thank my mom for getting me out of the house on Friday – it was very hard on me, but I needed to feel useful and I HAD to get out of here before I lost it completely! She took me to get some new bedding to take to KC. I spend so much of my time in the bed that I knew I would need a mattress pad, a good comforter and some soft high thread count sheets. Even if I don’t end up staying longer than a week those items alone will be a comfort to my aching body!

So I got out in the world. Good news is I didn’t have a complete meltdown, bad news is that my CNS* got so over-stimulated that by 10:00 p.m. I had to take some Demerol, Phenergan, Klonopin and Restoril to calm my body and my brain down. Even with all of that I didn’t fall asleep until close to 5 a.m. Hard to believe I know! It’s all hard for me to believe too. Hard to realize that just an afternoon outing can wreak such havoc on my brain in so many ways. Hard to understand how the problem with my brain manifests itself into muscle twitches, spasms, and feeling like I could crawl out of my skin. The hardest part to understand is why on earth I can’t seem to control even the most simple of bodily functions these days. Sad thing is if I can’t understand it all myself, then how can I expect anyone who isn’t experiencing it to understand? It is all so confusing and at times completely overwhelming.

Now, back to the prepared part of this message. In the “getting things checked off the to-do list” hoopla, buying new bedding wasn’t the only thing that was accomplished. The digital recorder and Garmin GPS system were delivered to the house too – YEA! I must say, internet shopping is such a blessing for someone like me! It’s like magic how packages appear on my porch out of nowhere, or it would be like magic if it was free…haha. The GPS was solely for M. I’m not a big fan of GPS systems. I’ve always done just fine using regular old maps. I know they are out of fashion these days, but I still ordered a 2010 Rand McNally United States Road Atlas. Better to be safe than sorry I say! We’ve mapped out our route and will be breaking the trip into 2 days of driving for 6 hours each day. I pray that my body can handle all the stimulation of being on the road but I’m equipped with the following to help out: my eye mask to shut out all the light, good ear plugs in case I need quiet as well as my MP3 with calming music to listen to, my car seat reclines almost flat and it also has a seat warmer that goes up into the back! I know - it’s June, why would I be happy about a seat warmer? Well, I stay cold and cold air conditioning blowing on me makes my aches and pains worse. M needs the car to be cool for him so the seat warmer and a cozy blanket will help me tremendously!

Usually the hardest part of packing for me is the clothes and shoes but that’s actually the easiest part this time. Comfy yoga pants (check), shorts and some jeans (check), t-shirts (check), comfy yoga tank tops (check), a couple of sweatshirts for my cold natured self (check) the only 2 pairs of comfortable shoes I own (check & check). It’s so easy to pack when your travel plans revolve around seeing a doctor and lots of other sick people. I’m taking my makeup but I highly doubt it will be used. I’ve only used it but two times in the last 3 months so I don’t see me using it there but it will be nice to know it’s there if I want it.

And now to the scared part. You see all that stuff I just listed is basically all the control that M & I have over this journey – the roads we take to get there, the stuff we take with us, and where we stay while we’re there. To be honest, even those small things aren't really under our control, but we do like to think they are, don't we? I know God has been leading us to this doctor, to this particular clinic. I also trust that if He has led us this far He will carry us on through the appointment and whatever comes after that. Whether it is the doctor’s plan for me to stay in KC or if she believes this can be treated at home, He is in control of it all.

I know that in my heart, but my brain is so riddled with fear and anxiety about all of it. I keep on saying that I am giving God control over all of this, but it is so hard for me to “let go & let God” as they say. I’m a control freak by nature, if you’ve been reading this blog none of this is news to you. I thought that the closer we got to the appointment the more calm I would feel but it’s been just the opposite. The closer it gets the more worry creeps into my brain and makes me question everything about everything. I HATE that worry – I despise it because I know it does not come from God. However, I am working with an “altered brain” and my CNS* is not functioning like a “normal” person’s would, so I am battling fear without feeling completely prepared for the battle.

Unfortunately all of this anxiety does nothing but make things worse for me physically. My heart rate goes nutty, my emotions are on overdrive, my patience stretched past its breaking point. But I do trust God and I try to cling to that when my brain tries to question everything else! Clinging to God is the only way I can make it through all of this. I must continue to have faith. Even though I have had my hopes dashed before when seeing new doctors, I believe that was because I was placing my faith in those doctors not in God. Now I am learning to have faith in God and pray that He will work through this doctor as He has led me to this place.

In the book of Psalm there are many verses about putting hope in God and having faith in the Lord even when you doubt or are grieving. Two that spoke to me today are:

“Why are you downcast, O my soul? Why so disturbed within me? Put your hope in God for I will yet praise him, my Savior and my God.” Psalm 42:11 (NIV)

“When my heart was grieved and my spirit embittered, I was senseless and ignorant; I was a brute beast before you. Yet I am always with you; you hold me by my right hand. You guide me with your counsel, and afterward you will take me into glory. Whom have I in heaven but you? And earth has nothing I desire besides you. My flesh and my heart may fail, but God is the strength of my heart and my portion forever.” Psalm 73:21-26 (NIV)

Again I will quote C.S. Lewis' book Mere Christianity. I know my own situation has made me better understand this quote about faith:
“It is the change from being confident about our own efforts to the state in which we despair of doing nothing for ourselves and leave it to God.”
That is a very short quote from a much better and longer chapter on faith, but it sums up where I find myself. I have found faith not through my own works or efforts, but actually in spite of them. I hope that’s not confusing to you, but if it is I will again recommend you read the whole book and then you will know what I mean by it.

Finally, I want to share this verse which helps me view all these troubles as blessings in disguise:

“We also boast in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not disappoint us, because God’s love has been poured into our hearts through the Holy Spirit that has been given to us.” Romas 5:3-5 (NRSV)

I hope you are all feeling blessed by God for the beautiful weather this weekend. I have really loved seeing the sunshine and blue skies from my bedroom window. I am also truly thankful for all of you who have let me know you are praying for me and for those who read all my rants and ramblings and still take the time to reach out to let me know I am not alone. Which reminds me, I wanted to say a special thank you to Carol who sent some beautiful spring flowers to me via my mom on Friday. I thank God for sweet gestures like flowers but also for all the other sweet gestures like little comments, emails, or cards. Basically anything that helps me feel connected to the outside world is a blessing beyond words and I am truly thankful!!!

(*CNS= Central Nervous System)

Comfortably numb

I woke up early today for some reason at 9:30. Don’t laugh, I know many of you have tackled a big part of your day by that time! However, since I don’t normally fall asleep until 3:00 am then 9:30 truly is “early” for me. I also woke up feeling somewhat human and mentally functioning better that I have in a few days. Again, I don’t begin to comprehend how the ebb and flow of my symptoms, I’m just thankful when I wake up and don’t feel the sudden urge to scream at someone or to cry! I also have no idea how long this feeling will last, but I am grateful for it no matter the length of time it is here.

Yesterday was a hard day physically but it was the emotional part that was much harder on me. I would give you an explanation on why it was hard but I don’t seem to have a real reason. The part of my brain that still attempts “rational thought” tells me that there are many reasons. One is that as the visit to KC gets closer, I get more nervous, upset, excited, scared, etc. Another reason could be that both my body and my brain are so very exhausted. I do at least know that both of those things are true whether they are the reasons behind me crying a few times yesterday or not, I don’t know. I am just glad I am not feeling that way so far today.

Today I do not feel like crying, but today I am not really “feeling” much of anything. If I feel anything at all today, emotionally speaking, I would say I feel numb. It has taken me a while to view numbness as an acceptable state, emotion, or feeling. I used to think feeling numb meant that my faith was wavering or that I wasn’t trusting God. I believed numb was the equivalent of a state of depression but this simply isn’t true. Depression is feeling sad and hopeless while numb is really not feeling one way or the other. Not sad, not happy, not down, not up – just numb. In fact, the only “feeling” I’ve found which might at times accompany numb is tired. Just plain worn out tired. It took me a long time to understand that this numbness is not me doubting God or His plan. It’s actually a gift from God to me I believe. I’m learning just how intricately made the human body is as I journey through this illness. I can see how one part of the body affects the others. The more I learn the more in awe I am of the Creator. He knows that our brains cannot handle emotional roller coasters. We just aren’t equipped to be constantly going from high to low and back again. I see numbness for what it is now – one of the body’s many “coping mechanisms” given to us by God to come into play when things get too overwhelming. Numbness to me is my brain’s own version of a short vacation.

Yet sometimes when the numbness strikes, as it has today, I seem to think I need to change it. I tell myself to read something inspiring or pray about how I feel. However, I don’t think those feelings come from God – I think they come from my inner control freak who understands feeling low and understands feeling excited but doesn’t remember what “normal” feels like. I can’t remember having a “middle of the road” type of day. The type where things were not horrible, yet they also weren't great. The type of day where everything is just okay. So, I believe God blesses me with this numbness if for nothing more than to give me a break from my own thoughts.

Today I do not feel like crying, I don't know that I feel like laughing either. I am just trying to enjoy this state of numb. Soon things will be going fast and I’ll be in panic and survival mode trying to get ready to leave. I will be double and triple checking that I’ve packed everything and forgotten nothing. Simply put I will be in “brain overload”. So, today I will just breathe in and out and feel numb and appreciate that gift from God that is allowing me to forget about the million other things my brain would normally be focused on. I will be numb and through that numbness I will feel peace within my body and my brain. Thank you, Lord, for allowing my brain to slow down, to take a break, and to be numb. Thank you for the peaceful feeling that comes from just breathing. Thank you for this hiatus of the ups and downs.

I hope you all are having good days but just know that if you’re also experiencing a numb day, that’s okay too. God might be trying to give your brain a vacation as well.

“The Lord gives strength to his people; the Lord blesses his people with peace.”
Psalm 29:11(NIV)

“Come to me, all you that are weary and carrying heavy burdens, and I will give you rest.”
Matthew 11:28 (NRSV)

A short one (GASP!)

I figure I have said a lot over the past few days. Of course, if you know me well then you know I could say plenty more, but I won't :)

I just wanted to clarify something. People have written me messages and emails telling me how they admire "my strong faith". I appreciate the messages and the sweet sentiment, but I want everyone to know that this is not MY faith - it's God's strength coming through me when I need it the most. This journey is one that is building my faith, but my faith has a long way to go! I have prayed for this time of trouble to work for His good and it has changed me and I only hope that it will continue to do so in this same way. A "faith stretching experience" as I have heard said. But I don't want anyone to think that this comes from ME. It doesn't - I would somehow mess it up for sure. This strength comes only from GOD and I thank Him for it daily.

Now, just a couple of verses from Isaiah to close with:
"He was wounded for our transgressions, crushed for our iniquities; upon him was the punishment that made us whole, and by his bruises we are healed." Isaiah 53:5 (NRSV)

"The Lord will guide you continually, and satisfy your needs in parched places, and make your bones strong." Isaiah 58:11 (NRSV)

I have faith in God's word and in His promises.

Pitching fits and trusting God

I had a better day today. I even got out of bed and sat on the floor of my closet room and surveyed the utter disaster it is currently in. I wasn’t able to “clean” but I was able to sit for a bit and stack articles of clothing into piles. My most important pile was the one I have started in the suitcase that’s bound for KC. I am close enough to be preparing to leave now. My brain doesn’t handle change well anymore so I thought the best way for me to adjust to this trip was to use the same methods I once used on my preschool students. For instance, having a trip bag open and ready to toss things in as I think of what I will want to have.

It also helps for me to have a working list of things I want to make sure and take written out and right there to add to as thoughts occur to me. We also ordered the Garmin GPS system for the car trip to KC. Why are we driving the almost 12 hours instead of flying you ask? Well, because my central nervous system (from here on I am just going to use CNS because it’s bothersome to type it out every time) cannot handle the noise and crowds of an airport or the confined space of an airplane. Not to mention the 4 or 5 hour layover before the next leg of the flight so really time wise, it all comes out in the wash. We are planning on stopping halfway and staying a night at a hotel so the drive won’t wear me or M out too bad.

We also ordered the digital recorder for the meetings with the KC doctor. She recommends that all patients record their sessions with her because she normally gives you an overwhelming amount of information and she says that taking notes, while encouraged, just can’t cover everything properly. She knows that most of her patients are like me & reach “brain overload” rather easily too. All these preparations are helping me to focus on being as prepared for the unknown of this trip as I can be. I have no idea what she will say or recommend and I hand that over to God, but I know my control issues and the trip is fast approaching (THANK YOU GOD!!!). We will be leaving in 13 days in order to have a full day in KC before seeing her on the 10th which will allow me a day of rest to get myself and my thoughts in order before “the big day”. And the car ride also allows us to take along little m, my furry child, the toy poodle. It might not be the best idea, but I have a feeling having him there will bring me more comfort than inconvenience.

Now, here is the big worry that I am trying my best to hand over to God. I am not sure they will have space for me in her treatment facility for me to start treatment immediately. However, whatever course of action she deems best will be based on the results of all her labs and her complete physical and consultation. That’s what she covers with us on the third day of the evaluation. I’ve spoken to current patients of hers who tell me that she’s repeatedly talked about just how many people are trying to get in to see her. Apparently the growth, even over just the past year, is tremendous and it’s causing her to have to turn people away. She wants to see everyone but she is under time constraints and therefore is confined to seeing only those who are the most symptomatic or need treatment the most. There is a chance that even if she does want me to start treatment immediately there may not be clinic space available. SO, new prayer request here, please pray that if it’s God’s will for me to receive treatment in KC that a spot for me will be available so I can start ASAP! I’m ready to get on the road to wellness!

Now, on another note, I have been reading some more C. S. Lewis lately. When I discussed in an earlier post about getting 3 books a few months ago at Barnes & Noble, one of them was Lewis’ “Mere Christianity” and I must say – it blew my mind. I absolutely loved it. The beginning was slow and somewhat tough reading, but from the middle to the end I was spell bound. I wish it were required reading for every Christian. It really made me question where my “ideas of God” come from – are they truly Biblically based or am I thinking of God as He was taught to me as a child in Sunday school and going no further, no deeper than that? I found in my case it was a little of both which made it all the more necessary for me to read it.

Last night I read his book “A Grief Observed” which is basically a journal he kept after the death of his wife. He married his wife knowing she had cancer, but there was a remission, there was a hope that it had gone away, and then there was its’ return leading to her eventual death. Many people think this is Lewis’ best work because it is not his typical “intellectual argument” but rather, it is exactly as the title states – we observe his grief and the process he goes throughout his grief. He realizes he is no better than anyone else when his “house of cards” (his phrasing not mine) was knocked down – he doubts God, gets mad at God, questions WHY a lot, and then eventually, he comes back to God with a stronger or perhaps renewed sense of faith. I wanted to share some of Lewis’ thoughts because I know my last entry was depressing and I hated writing it, well that’s not exactly correct. I didn’t hate writing it rather I hated HAVING to write it. Because it forced me to be as open and honest as I can be without bringing myself further down the spiral which often ends in what I hate most, self-pity.

I thought perhaps reading the words of a much better writer than I might demonstrate better the back and forth of these emotions, the rollercoaster of feelings. I’m not grieving the loss of my spouse and I don’t claim that my pain is more than his (or anyone else’s for that matter). It’s just that I’m learning that pain, whatever its’ cause, seems to have a cycle and grief is a big part of that cycle. I’ve been grieving the loss of my former self, my stronger self, my old life. But, I have to let go of that because you cannot grieve forever. I think that grief is a gift in a sense. A time where we stop the “niceties” or “formalities” of prayer and begin to allow ourselves to tell God how we truly feel about our situation. God already knows how we truly feel of course. Yet, I think it’s important to note the difference of God knowing how you feel because He is omniscient and God knowing how you feel because you tell Him in your own words to try and communicate with Him what your honest feelings no matter how scary or ugly they may be. I think this is exactly the relationship that God desires to have with us. He wants us to come to Him with our joys and our sorrows and be honest with Him about it all. We don’t always pray “honestly” and when you think of how silly it is to try and hide how you feel from God, you see why He may desire something more of us. Instead of pious prayers I believe He wants something REAL.

In “A Grief Observed” Lewis begins his journal how I think any widow or widower would – he is angry. Here is one of the most famous quotes from the book:
“Meanwhile, where is God? This is one of the most disquieting symptoms. When you are happy, so happy that you have no sense of needing Him, so happy that you are tempted to feel His claims upon you as an interruption, if you remember yourself and turn to Him with gratitude and praise, you will be – or so it feels – welcomed with open arms. But go to Him when you need is desperate, when all other help is vain, and what do you find? A door slammed in your face, and a sound of bolting and double bolting on the inside. After that, silence. You may as well turn away. The longer you wait, the more emphatic the silence will become. There are no lights in the windows. It might be an empty house. Was it ever inhabited? It seemed so once. And that seeming was as strong as this. What can this mean? Why is He so present a commander in our time of prosperity and so very absent a help in time of trouble?”

When I first read that I must admit, it hurt my heart. I realized it hurt my heart because his thoughts were so similar to thoughts I myself had years ago. That I had prayed and prayed and found nothing – no answers and at times I had not felt even comfort. It hurt my heart because now, as I look back on that time, I know how very untrue those statements are because it is as I have gone deeper into the valleys that I have gotten to know God on such a more intimate level. I had read that quote before in other books and hated that is was used because I felt it was so one sided. Having read Lewis I knew him to be a man of such strong faith, not to mention a great debater, so I thought surely there was something else missing. Some thought that must have occurred to him after that one. Some thought that would allow him to see God as I now see God – always with me, always there for me, even in the deepest of valleys.

I believe I was right too because as Lewis works through the horrible stages of his grief he later writes:
“You can’t see anything properly while your eyes are blurred with tears. You can’t, in most things, get what you want if you want it too desperately: anyway, you can’t get the best out of it. ‘Now! Let’s have a real good talk’ reduces everyone to silence. ‘I MUST get a good sleep tonight’ ushers in hours of wakefulness. Delicious drinks are wasted on a really ravenous thirst. Is it similarly the very intensity of the longing that draws the iron curtain, that makes us feel we are staring into a vacuum when we think about our dead? ‘Them as asks’ (at any rate ‘asks too importunately) don’t get. Perhaps can’t.”

He continues with:
“And so, perhaps, with God. I have gradually been coming to feel that the door is no longer shut and bolted. Was it my own frantic need that slammed it in my face? The time when there is nothing at all in your soul except a cry for help may be just the time when God can’t give it: you are like the drowning man who can’t be helped because he clutches and grabs. Perhaps your own reiterated cries deafen you to the voice you hoped to hear. On the other hand, ‘Knock and it shall be opened.’ But does knocking mean hammering and kicking the door like a maniac? And there’s also ‘To him that hath shall be given.’ After all, you must have a capacity to receive or even omnipotence can’t give. Perhaps your own passion temporarily destroys the capacity.”

And there it is – it is not always on God to answer us immediately, or at all sometimes. I have found though my own experiences that it’s at times when I, like Lewis, am “hammering and kicking the door like a maniac” seemingly get no response at all. Later on, I often find God whispering the answer to me of the very question I was kicking down the door for to begin with. I have wondered, “Why now? Why not then when I really needed to know?” and I have come back every time with the same feeling. The feeling that had God given me the answer at that time, when I was kicking and hammering, that I wouldn’t have seen it as “a good enough answer”. I had to step away and accept that God’s will happens in His timing, not my own, no matter how frustrating that may be to my human brain.

I think we, as humans, have to go through the “fit pitching” stage before we reach a rational state of mind where we can understand His answers. I said before that I got an idea that God might often see me as I would see a 3 year old child who was frustrated. Any of us know that a 3 year old in the midst of a temper tantrum cannot possibly understand logic or reason. They might be pitching a fit in the middle of the grocery store for an ice cream cone and during that fit they cannot understand that you are buying the ice cream and the cones and that you plan to make them one as soon as you get home. Nope, instead they throw a fit of major proportions and as they do that ice cream is melting and they are, without realizing it, only delaying their own enjoyment. I have a feeling that’s what we are like on this earth. We see what we want, or even sometimes what we think we deserve, and we don’t understand why God isn’t giving it to us. As we mature in our faith I believe we learn to trust God more and that keeps us from pitching a lot of those fits. But, in the beginning, and sometimes in times of tragedy, loss, or just plain fear, I think we are again like children, pitching fits all the time. If we didn’t pitch the fit maybe we could understand that either what we want wouldn’t really be the best thing for us in the end. OR, and this one really gets me because it’s happened to me before, that He IS planning on giving us exactly what we want, but in His perfect timing.

I pray that my fit pitching days are getting to be fewer and my days of trusting in God and having faith that ALL of this, the good and the bad, are becoming more frequent. That all of this is part of His master plan which is always better than my own. So yes, I had a better day today. I hope you all had good days and I pray that each of you continue to have good days and have fewer reasons to “pitch fits” :)

Oh - also, I know I have told you all about how my mental capacity is failing me miserably at times. It is, and I sometimes have to point out a word to M to have him pronounce it for me. I want to state this again because it just makes my writing all of this even more miraculous to me. I know that without God I wouldn't be able to write any of this. I pray and He dictates as I try to type and not mess up whatever message He wants to send through me.

In closing a couple of verses that mean a lot right now. First, one that makes me think of each and every one of you who read through my ramblings:
"I have not stopped giving thanks for you, remembering you in my prayers" Ephesians 1:16

Second, one that makes me realize yet again that fit pitching is not needed:
"The Lord is faithful in all His words, and gracious in all His deeds" Psalm 145:13

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.

I'm working on one

I haven't posted anything because I've been down in the dumps and I don't like posting depressing messages. I don't like posting things that aren't somehow uplifting. However, when you aren't feeling uplifted it's hard to write as though you are.

I am having a couple of rough days and they are taking a toll on me. I know God is good and I know He is with me. And wonder of wonders, I know that He counts each tear I shed as I try to navigate through this new world of being bedridden and feeling as though I'm under house arrest. He will see me through this, but for now I'm working on an entry that says more than this. Right now I'm working on trying to see what God wants me to write as I delve a little deeper into this "new normal" I'm living. It's a hard journey guys, a harder one than I've ever taken and so I'm having to post this to let you know I'm here & I'm thinking. Right now I just need your prayers and support because Memorial Day will mark a solid month since I have left this house (outside of my 3 doctors' appointments) and I am having a hard time.

But, since I hate to be "Debbie Downer" I want to close with a verse that I felt led to read just now:

"Hear my cry, O God; listen to my prayer. From the ends of the earth I call to you, I call as my heart grows faint; lead me to the rock that is higher than I. For you have been my refuge, a strong tower against the foe." Psalm 61:1-3

Since you will see this is posting at 5:00 am (almost) then you know it was a night of no sleep and that never ends well. Poor M...he'll probably be dealing with a weeping wife tomorrow if not for anything more than simple lack of sleep. I pray you all had a good night's rest and that this Memorial Day weekend is a good one for you and your families. I know I am thankful for the fact that many people fought so that I could live in a country where I could post my random thoughts on a website for all the world to see completely uncensored. I am honored by those who gave their lives so that I might live in a country where I am so accustomed to freedom that I actually take it for granted. In fact, that's part of my downer mood - my body has gotten in the way of my freedom to go and do! So on that note, may we all not take any of our freedoms for granted this weekend!

Patience through frustration

Yesterday I DID take that shower. I even shaved my legs (gasp - yes)! And the rest of the day I laid back in the bed thinking, "Maybe I should just push myself to get up and do things."

For anyone who has gone through a long illness, this is a familiar thought. You begin to believe that maybe you're just making yourself feel worse by staying in bed. You wonder if you tried to get up and do something, anything, that just maybe you might feel stronger. It doesn't matter that you don't feel strong while you're thinking this, or even that the past 10 times you've "tried" to do things you found out the hard way that you could not do them. Your brain pushes that back and focuses on "trying to be normal". Well, I did that today. I "tried to be normal". You know - someone else's version of normal.

What did I do you ask? Well, I did some laundry. I thought, "All I have to do is stand up for a few minutes while I shove stuff in the washer or dryer and then I can just lie back down in the bed. That shouldn't be too hard." If you've read this blog up to now then this streak of stupidity or stubbornness should come as no shock. So, while M was off at a lunch meeting, I began to do laundry. When the first load came out of the dryer I was proud! I thought, "Maybe I can do more than I've been thinking I can!" I went back and laid out on the bed waiting for the next load to be ready to switch over. Each time I knew my heart was racing, but I wanted to pretend it wasn't. I wanted to pretend I was "normal".

After the last load I fought M to allow me to put the sheets on the bed. He didn't want to let me do it, but I have control issues, and honestly he doesn't make up a bed to my satisfaction (haha!). So I put them on & I knew I couldn't try for "perfect". I knew I needed to just get them on the bed and I did so as quickly as I could. I wasn't even able to put the pillow cases on before having to lie back down. My pulse meter registered 160 with me on the bed. That was from 3 minutes of "hard work". I finally looked at M and just got teary eyed because I have to accept "my normal" and it's not like every one else's. No matter how much I wish it were. Apparently I can't just make it happen although I tried hard to do just that. M looked at me and asked, "Are you okay?" and I said, "I'm just so tired. I'm just so tired of this and I'm tired of this body."

So for all of you who think I am super positive through all of this, through the every day things, all the time, well guess what? I am not. But, I've already said I hate pity parties so I didn't allow myself to throw one. I just accepted my frustration and wondererd about why I was trying to push so hard. Why have I wanted to push so very hard the past 2 days? I realized then that outside of 3 visits to doctors, I have not been outside of this house - or out of this bed really - in 22 days. That's a long time to be stuck anywhere. Even my normally comfortable bed.

I thought when M went downstairs to do some work that I might allow myself a good cry, I mean 22 days??? Surely I can cry about that, at least by myself??? But just when I thought I might give in to that, I saw my calendar which showed May 20th and I realized that those 22 days is a longer amount of time than the days left until I am in KC. God showed me that I've made it through 22 days and I felt Him telling me I don't need to push anymore. I need to rest and lie in this bed and just wait exactly 3 weeks to be examined by the doctor in KC (of course as I type this it's past midnight so technically it's only 20 days - heehee). But honestly, I've waited a lot longer for a lot less!

Yes, I'm frustrated & yes, I feel like screaming some days. Normally I would be looking for any excuse to NOT do the laundry, but I wanted to be productive, I wanted to feel that I could DO SOMETHING! But God seems to be telling me that lying here in this bed I AM doing something - I am being taught patience. Patience is hard because it doesn't come to me naturally. I think the only time people have referred to me as "patient" was when I taught preschool because I'm very patient with little kids. WHY? Because I recognize that they have very little control over what happens in their lives and I've seen that lead to frustration and acting out. Also, if they're really young they unable to even verbally communicate what they're thinking or feeling. Right now - just as I typed that last part out - a thought occurred to me. That is exactly how God sees me, as His "little kid" who is having a tough time being patient! I remember how as a teacher I would work with those children to help them voice their thoughts or teach them appropriate ways to vent their frustrations (meaning no biting or hitting others!). I never got mad at them because they were little kids & they didn't know any better.

I guess I'm just a 34 year old "little kid" who is still trying to vent my frustrations. I don't control the world, I get that. I just wanted control over my own body, but I don't have that right now. And you know what, that's okay because that means God is in control of it. So, why am I upset because I can't do laundry? Because I wanted control & by now I should remember I'm trying to hand all of that over to God! Oh, and my calendar has a Bible verse for each day. When I looked at it to see the date, I should have gotten the message loud & clear when I read this:
"Therefore, if anyone is in Christ, he is a new creation; the old has gone, the new has come!" 2 Corinthians 5:17

I am just having trouble letting go of "the old" because the old me thought I was in control. That could even refer to times I thought I SHOULD BE in control. Let's all get a good laugh out of that now :)

Patience is my goal everyday but I thank you Lord for being patient with me when I fall so short and for showing me "appropriate ways to vent my frustrations". I'm going to bed now. Hope you all have a Thursday full of patience in you and all around you. I may have to experience frustration before I can experience patience, but the kind of patience God wants for us brings a much better feeling along with it - the feeling of PEACE.

A time to learn important lessons

I just added a "countdown" to the right of the page that shows how many days until I get to see the doctor in Kansas City - not many left - yea!!! Now, health update first: I'm basically the same. I'm exhausted, weak, and in a good bit of pain. I am trying to muster up the energy to take a shower and wash my hair. I never thought I would see a day where taking a shower would seem like such an accomplishment! But the day is still early so who knows, I may still not get to that much needed shower. Why? Because I felt I was supposed to share the following with you.

It's a bit long, it may not be well written, but it is from the heart. The basis of it comes from something I orginally wrote to a friend. I have been sick off and on for a long time and I knew the experience had made me angry, resentful, jealous and a lot of other BAD things. I didn't want to be that person. I prayed a lot a few years ago and asked for healing. It just took me awhile to see that I needed God to heal the emotional part of me as much as I needed Him to heal the physical part of me. Otherwise all this time in spent cooped up in bed would just be wasted time. I quit work 3 1/2 years ago due to my health and I would hate to come out of this seeing all of that as just "wasted time".

A few months back I had been feeling all “poor pitiful me” – I still throw a pity party for myself now & again, but thankfully not as many and not as often! I dislike pity from other people, and I really hate self-pity, so I knew I needed help changing my attitude. I decided to read books that would help to lift my spirits. So, 2 -3 months ago I summoned up the energy to go to Barnes & Noble to find some. I came home with three. The first one I read was “Where Is God When It Hurts?” by Philip Yancey (we'll discuss the other 2 some other time). I cannot begin to tell you how helpful this book was to me in helping to turn around my mindset. The author really does an excellent job of discussing physical suffering, our constant questioning of “why” we go through it, how we go through it, and even about how people are ill equipped to know how to treat someone who IS going through it. The author spent a year meeting with a support group for terminally ill patients, he spent time with cancer survivors and chronically ill patients, and he spent time with people trying to overcome huge physical handicaps.

I already knew the statistics for people who have "positive attitudes" overcoming terminal illnesses like cancer more often than those whose views were hopeless. But it still amazed me to read how much a person's attitude could help, or in some cases hinder, their situation. The people who had faith in God did not just happily accept their fates, but they did eventually find SOMETHING about their ailment or handicap that they could view in a positive light. It might have taken them years, but the ones who achieved peace were the ones who finally quit demanding to know why God allowed these things to happen to them. The people who never could accept the "not knowing", the ones who always asked, "Why me?" seemed to lose hope and just simmered in their anger. I know these are people who faced a lot more than me in many ways and I acknowledge that if I were in their shoes, I do not know how I would react. But it did make me realize that I would much rather work on being positive than to allow myself to wallow in my own self-righteous indignation. I wanted to work towards that goal of having peace about my situation.

The author uses quotes from other authors that relate to different aspects of suffering throughout the book. So many of them really touched me and I want to share a couple on here. One is from John Donne, who lived in the 1600s. He got sick and believing he had the plague, thought he would surely die. He came very close to dying, but he survived. Historians now say they believe he never had the plague but was afflicted with typhoid fever? It was during his illness that he wrote, "Devotions" which are basically his talks with God. The following quote was shared in Philip Yancey's book:
“I can read my affliction as a correction, or as a mercy, and I confess I know not how to read it. How should I understand this illness? I cannot conclude, though death conclude me. If it is a correction indeed, let me translate it and read it as a mercy; for though it may appear to be a correction, I can have no greater proof of your mercy than to die in thee and by that death be united to him who died for me.”

Now it is a bit bleak, but he wrote this under the assumption that he would most certainly die. What I gained from it is that it clearly shows in the 400 years since then we have gotten no better at understanding WHY we suffer.

I knew I wanted my own experince with chronic illness to change me for the better. I did not want it to make me bitter. Many things have been stripped from me – my ability to work, my ability to rely on myself for even simple tasks, my ability to GO and to DO, my physical appearance has even changed, but I try hard every day to see all of it in a positive light. I personally like to think that that God is working in me so much that there just isn’t room for the other stuff. I never considered myself a “bad person” really. But I can now see that I have grown and changed through this "bad time". My spirit has been changed and will never again be the same. My priorites needed a lot of work, and now I find that things (like clothes, cars, just stuff in general) have been put in a better perspective for me. I say "better" because I am human and by nature we tend to have a hard time not desiring the "things" of the world! But, I am working on it. I have learned to thank God for simple things that cannot be bought - like EVERY beat of my heart, even those irregular ones.

Now – please understand that I am not in ANY WAY considering myself better than anyone else - I AM NOT! And, don’t get me wrong, this attitude adjustment is still ongoing and has taken YEARS to just get to this point, not months or days! I still get MAD & I still get frustrated, but I've started to allow myself to be open to learning from all of this instead of hating and cursing it all. I’m sure all of you have had some hard time in your life that you have come away "scarred but smarter" from. I'm sure you can relate to how long it takes to see something which on the surface seems so very bad as something that can lead to a change that is so very good or very needed at the least.

Since I have no children the house stays quiet - VERY quiet. I stopped watching tv during the day a year or more ago because honestly, not only was there nothing good on, but I had actually seen everything at least once! So, I would read, or send emails, or get on facebook. I would try to connect with people SOMEHOW from this prison cell of a bed. But, I've also come to see this overwhelming quiet as very peaceful at times. I know it's during that quiet that I feel God's presence and His comfort the most. Now, believe me, I've been mad at God, many times actually. But, I think I have worked through most of that and am finding my way to the other side. I’ve accepted that there is a reason (albeit far from my grasp to explain what that reason is) for the WHYS of all of this. I trust that I may never KNOW that reason here on this earth. But, I feel that when I get to Heaven, God’s going to allow me to see what this was all about.

The following quote from Fyodor Dostoyevski really helps me understand how the silence that covers my house has actually been helpful to me in making these changes:
“Sometimes I went as far as to thank destiny for the privilege of such loneliness [in Siberia], for only in solitude could I have scrutinized my past so carefully, or examined so closely my interior and outward life. What strong and strange new germs of hope were born in my soul during those memorable hours! I weighed and decided all sorts of issues, I entered into a compact with myself to avoid the errors of former years and the rocks on which I had been wrecked.”

I don’t think many people are allowed to have the time of solitude that I have gotten through my illness. A time that I kicked and screamed and cried and complained and wailed to God Himself. A time that I was forced, by my own prayers to God for conviction of His will, to see my inadequicies in such a forceful way. I have been in this bed and railed against what “God has to done to me” and cried asking Him, “Why me???”. And then He has allowed me to see just how many things I needed to change in my heart, in my life, in my simple daily actions towards others. I said I wasn’t a “bad person” and I wasn’t what society would deem a "bad person" to be, but I finally began to see how many times I missed out on being a truly GOOD person. It has shamed me and at the same time given me heart that I am finally using this time wisely. That through this I am being given a chance to see me true self with all my faults and flaws.

But seeing it all is such a hard pill to swallow! None of us want to see ourselves in a really harsh light, but because I asked God to show me where I needed to change - He did! But He did it slowly. He would build me up before allowing me to have to face so MANY things that were in me that I never wanted to claim! I thought I understood love, compassion, and friendship, but I really did not. There was no way I could have because "my understanding" of those things came from judging what other people did in comparison to what I did. YEP - that's right, I judged people according to ME! That is the painfully warped perception I had to see in myself. If someone handled a situation in the same way I thought I would handle it, I thought they were doing the "right thing". If they handled it differently, I tended to view it as the "wrong thing". Now I see how stupid that "logic" is!

I am only human and I know I will never be perfect, I don't even worry about getting anywhere near the arena of perfection! But, I asked God to use this as a time to work in me and He is doing so every day. I am trying to grasp the concept of true unconditional love, of true compassion, and of true friendship (and the third comes only after you can really understand the first two!). I finally believe that I am on the road to learning how to judge less and to love more. To let go of what I want to do and focus more on what God put me on this earth to do - to love.

Love is the action verb of the greatest commandments, right? From Matthew 22:36-40 (NIV): "Teacher, which is the greatest commandment in the law?" Jesus replied, "'Love the Lord your God with all your heart and with all your soul and with all your mind.' This is the first and greatest commandment. And the second is like it: 'Love your neighbor as yourself.' All the Law and the Prophets hang on these two commandments."

I pray that God takes my humble attempts at understanding my situation and uses these words to reach out to you in your own life. I pray that God works in your heart without you ever having to go through a "breaking point" or hitting an "all time low". Many people can learn things without suffering. As for me, I have a hard head and it seems I had to fall hard to break it open and I had to get over my own ego so I could finally hear what God has been trying to whisper to me forever. Apparently, up until now I ignored whispers and He could only reach me by YELLING to get my attention. For those of you who know me, this should come as no surprise at all :) But, now that He's got my attention, He's tuning my ears more toward the whispers and I am so very grateful for that. Okay, I think I'll attempt that shower before the whole day passes me by again!

The best bed buddy

Just had to share some pics of "little m" who keeps me company in the bed.

Sometimes he gets more serious about getting his beauty sleep than I do & he'll burrow under the covers. That's what he did tonight. Then when he heard me reach for the camera his face came out from hiding. He's my cutie :)

And yes, there is an entire toy poodle hiding in those covers below:

Hope you are all enjoying a good night's rest. I'm about to try it out again myself :)

To sleep; perchance to dream...

I'm not sleeping much these days. Well, at least not on nights when I'm not on Demerol...ha. I've been recovering from the disappointment of that doctor's visit, so has M. It's hard on both of us and thankfully we end up feeling more on the same team for it instead of against each other!!! But, even in disappointment God is here, taking care of me.

I've been corresponding with a woman I have never met who went to Kansas City for treatment last year. Her entire life she battled her health and she understands the frustration of chronic illness like only another sick person can! She reached out to me from the goodness of her heart, to tell me that I should be hopeful because the doctor in KC helped her when so many others had treated her as the nephrologist treated me the other day. The "best of the best" at local "TOP HOSPITAL" have disappointed her repeatedly, as they have me. They misdiagnosed her time after time, but never hesitated to prescribe yet another medication, many of which actually worked against her. I've been handed prescriptions and told I "finally had a diagnosis" before too. However, after following strict treatment regimens with no results I've realized their "diagnoses" are really just symptoms for something larger that is lurking within my body. I think the picture of my red blood cell infiltrated with that black bacteria shows me that I'm right.

So, thank you Lord, for putting people in my path who HAVE been where I am and who HAVE come through the other side better and healthier. She's not "cured", she's still battling so pray for her too, but she is making great progress after a year of treatment. I see that as a HUGE HOPE! This road doesn't end when I reach KC, it will actually just be the beginning. But, without hope of finding a healthier me at the end of all this, I know that I would be incapable of the positive feelings that do surface every now and again!

I never want to post "downer messages" but at the same time, I want and desperately NEED to be honest. This woman and I both related to each other about how we've "lost friends" through our illnesses. I've heard many stories of people who are "chronically ill" saying things like, "It shows you who your true friends are". Many people have written to me in emails or messages saying how "strong" or "positive" I am. I do appreciate that, but I also have to explain that it takes a lot of WORK! I have to work and let God work through me to keep my spirits uplifted and sometimes no matter how hard I try it seems to not be enough. The down feelings surface anyway. That's when it takes the work of OTHER PEOPLE because I'm not strong enough to keep on smiling through everything. I wish I could be that person, but I am not.

Even if I was at some time in my past, this disease I'm fighting has taken a toll on my central nervous system and on my entire brain for that matter. So, I doubt any prior strength or upbeat moods would have survived through all this. I have been disappointed by some people who seem to have disappeared from my life, but I do understand it too. WHY? Because it isn't easy to be friends with someone going through something like this. It's hard for me to understand feeling this bad & I'm the one experiencing it! So, I know it has to be hard for someone else to understand. Much less to know what to say or do for someone like me. Not to mention, when someone is cooped up in bed all the time you don't see them anymore and it becomes easier to forget them. I really think "out of sight, out of mind" is much more common than "absence makes the heart grow fonder". So, I just want to say that whether it's me or someone else who is going through an illness, or just a really rough time in their lives like a divorce, losing a job, a sick child...whatever IT is there's only one thing they want or need & that's SUPPORT. Whether it comes in the form of an easy little "How are you today?" email, or an actual card in the mail, or just a text message that says, "Thinking about you"....it really is the little things that matter the most! It matters to feel like people DO CARE! You just want to know that you're not forgotten. You want to know you're still important to someone out there in that world that keeps on going on without you.

I'm not saying this to ask that everyone stop what they're doing and do something for me, so please don't take it that way. It just hit me when I was discussing with a total stranger the isolation that comes from a prolonged illness that maybe people needed to know what it is that they CAN do. So, I guess I'm saying it for all the people who are going through really difficult things who WON'T SAY IT! Because I don't know many people whose lives are always sunshine & roses, do you??? And because without emphasizing ALL of that, I couldn't make an even bigger point. The bigger point is when a complete stranger reaches out to comfort me and to provide me with that ever elusive hope...well, I KNOW and I SEE that is nothing short of God working through them. And I am eternally grateful for their show of support. So, maybe when you read this you will let God work through YOU to reach out to someone you know, or maybe even a total stranger who just might need an encouraging word. It's amazing what can happen when we let God steer our lives! We can be walking, talking miracles to other people here on earth and I honestly don't think there's a better feeling than that!

Disappointment passes...

Well, the nephrologist was not helpful. He looked over my medical records (flipped through would be more appropriate) and said, "I can see you are very ill, but I don't know how I can help you. You've seen some really good doctors and with such vague symptoms I think the best I can do is try to help figure out why you're making so many kidney stones."

At this point I really don't give a rip about my kidney stones. I tried to convey this thought, but I was tired and just having to go there wore me out. I knew within 10 minutes that this man was not going to help me much. In fact, he seemed more concerned about whether I had ever had to seek treatment for an eating disorder. If not for M telling him that I have always eaten like a truck driver and that my weight loss of 26 pounds this year is completely unintentional, I think he may have suggested that I see a shrink about anorexia. M was getting irritated too and said that I always get 1,800 to 2,000 calories per day. Oh, but he wants to see me again in a month. M & I didn't make that appointment. I mean, he actually told us he couldn't help us "with everything that's wrong" and by June 10th we'll in Kansas City seeing a doctor who CAN help us with everything - THANK YOU LORD!

GOOD NEWS?? Well, yes. The Florinef seems to be working and my blood pressure, while still very low, is at least a bit more stable. It is also keeping my heart rate from going into the 170s. I am still in pain, but I can handle pain. I am hoping that as the Florinef keeps the fluid in my body that the pain will ease off. So, if I need to go back to Dr. G 2-3 times a week and get IV fluids until June 10th, so be it.

I came home disappointed and I went straight to sleep for a couple of hours. Then some good friends brought dinner over! After they left I checked facebook and found so many sweet messages from people who just wanted to let me know they were praying for me. So, after some good food and some sweet thoughts, I'm not disappointed - I'm blessed. It just took a good nap, a full belly and some prayers for me to realize it.

HOW TO COMMENT

I have had a few people say they can't post comments on here. I've checked my settings and it should allow ANYONE (even if you don't create a google profile) to post a comment. Below each post is a time/date stamp and to the right of that you should see "0 Comments" or if someone has commented it will say "2 Comments", etc. If you click on the word comments it will lead you to a page where you can write a comment and read any comments that may have been written. I wanted to explain all this so if there were more of you out there who had been wanting to write to me but couldn't figure out how, this should help.

And I do LOVE when people write to me. It lets me know that people are reading my crazy ramblings and I love getting to hear from people. Hope you are all having a great Thursday! M & I will be headed to the kidney doctor in about an hour. I'll post an update whenever I can do so after our appointment!

The ups and the downs

Up and down and up and down. It's never ending it seems. I try so hard to stay positive, but then I wonder why it is HARD to be positive? After my 8 hours of feeling good on the IV fluid things went downhill (yes, again) and I had a really rough day yesterday. I feel like someone has been punching, or perhaps kicking, me in the kidneys. Last night I gave in and took a Demerol (which I RARELY EVER DO) in order to just have a "dull constant pain" instead of a "miserably unbearable sharp constant pain". I had some bad muscle spasms yesterday and they wore me out. After over 100 kidney stones one would think this kind of pain would just be old hat for me. In a way it is and that makes me sad too.

So, I'm having a down day, a low period following that "good feeling". It's a wonder M can keep up with my mood swings because they are usually based on my pain levels. I'll just say he had no problem with me taking a pain killer last night - ha! Honestly, it is hard on him to watch me hurt and feel helpless to fix it. I get that & I love him even more for feeling that way.

I know I should not worry, I should not fear. God did not give me a spirit of fear & I know that. But, I'm working with an "altered brain" and it wants to fear and it loves to worry. I pray, and I find peace through that, but then that worry will pop right back up as I try to beat it back down. The pain is not what I worry about though. I am so very excited to see the kidney doctor tomorrow, but I am also worried. Scared that he won't understand what I am going through. That he will be one of the MANY doctors who say Lyme disease does not exist in Alabama. So, pray that he will hear me & M as we explain my ongoing battle. Pray that whatever tests he runs and whatever medications he wants to put me on won't do any more damage to my tired body.

My "altered brain" is a source of fear in itself. I cannot begin to describe how difficult it has been for me to watch as I slowly lose my "way with words" and my ability to read them aloud or pronounce them correctly. Words are like air to me - I breathe them in rather than read them and I when I write or talk it is more like exhaling. They are a part of me. Always have been. I talked early as a child and some would say I haven't shut up since - & they're probably right! I started reading around age 4 or 5 and I inhale books at a frantic pace. Or, at least, I used to do so. Now I find myself re-reading the same page or even the same passage over and over because I'm "not getting it". That is so unlike me and it forces me to see that whatever this disease (or diseases) is (or are), I am losing the battle and they are gaining ground. I write when I can't find another way to cope with what is going on in my life. I kept journals from the time I was 13. You would think that this - ALL OF THIS - would have given me enough to write a novel. Yet, just writing these posts can take me hours. I sit and stare at the screen trying to think of a simple words like "connected" or "describe" in order to finish a sentence. I hate this more than the pain itself.

However, I will say again that God is GOOD! And for me to be able to write that last paragraph was nothing short of a miracle. It's been a long while since I felt like I was able to be that descriptive about what is going on. I pray that I will get back to that place where words flowed fast like water in a river rather than being slow like molasses. I pray that tomorrow will find me in a peaceful state of mind and not one of frenzy as I meet yet another new doctor and go over my story AGAIN.

I actually need to stop writing this so I can use what energy I have to print out all the lab work, CT reports, etc. from the past 3-5 years since Dr. G says the kidney doctor will need to see ALL of it. I never knew that being a patient could be a job in itself, but I've found I'm an expert in organizing medical records. When I do get well I think I should start a business as a "consultant" for physicians' offices. You know, go in there and train the staff on how to actually run an office. Because I've been in hundreds of physician's offices and somehow NONE of them are organized or run efficiently at all. Perhaps I've found my calling?? Probably not though. Because if & when I am through all of this, I can't imagine WANTING to set foot inside another doctor's office! :)

I'll get through these ups & downs...I'll get through tomorrow's doctor appointment...I'll get through these next few weeks until I can head to Kansas City. I know I will because it's what I've done my entire life - I've GOTTEN THROUGH IT! How? Well, I used to think it was because I was strong, or smart, or that I could handle things that others could not. But I know better than that now. I get through it because GOD gets me through it. He will carry me through it all and I am forever grateful to know He is with me during both the up and the down times.

I lean on Him and I cling to this: "Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God which transcends all understanding will guard your hearts and your minds in Christ Jesus." (Philippians 4:6 & 7) And believe me, I start my prayers with THANKSGIVING!!! I am truly thankful for each one of you who cares enough to read my ramblings. Your kind words and prayers are so precious to me. They help to give me the UP feelings when those DOWN feelings are trying to press in all around me. I truly am thankful to God for all of you.

Feeling good :)

I cannot begin to describe how good I felt last night after having the IV fluid! M & I even noticed I was talking in my “strong voice” which we haven’t heard in months I don’t believe! For the first time in probably years, I was able to walk from my bed to the kitchen and my heart rate stayed in the 80s!!! I then took my blood pressure while standing and it was….wait for it….it’s amazing….102/65! That was around 10:30 PM and I so HATED having to go to bed when I was feeling good!

But all things pass, and especially in the case of fluid – haha! I was up for a while last night making frequent bathroom visits. By 9:30 this morning my blood pressure was back down to 66/39 and my pulse was 55. That was after being awake for 20 minutes and having a phone conversation!

While I am frustrated to lose that “GOOD FEELING”, I also have to see this as a positive thing. This only confirms that my kidneys are not acting as they should. As I sit here wanting to be depressed about all of it, I must realize that what happened yesterday was truly an answer to prayer. I was able to see what my life might be like if I could hold onto to fluid & that was really awesome. Now, I pray that on THURSDAY (still saying it in monster truck excitement voice – ha) the kidney doctor (aka nephrologist) will be able to figure out what is causing this problem. Dr. G said it could be one of the symptoms of Lyme, or it could be something else.

But I know, that through it ALL, God is GOOD. I have faith in that, not in doctors – although Dr. G is fast becoming a new favorite :)

Hope you all have a good Tuesday!

I'm seeing the term "Fill her up" in a whole new light now :)

SO...just got back from getting a liter of IV fluids from Dr. G and WOW! I'm much perkier! My blood pressure was 78/54 before the fluids and a half hour after the fluids I'm up to 91/66!!! I haven't seen it that high in weeks!!

Oh, and some of you know that I have "difficult veins" and sometimes drawing blood or starting an IV is more like an exercise in torture. I sit very still but my veins have a mind of their own! Let me tell you how refreshing it was to have a doctor (yes, doctor - not nurse) look at my veins carefully to size up the situation. Then he found one that looked good and asked, "Do you mind if I pray about this before I stick you? That way if the stick doesn't go well we at least know we asked God for help!" M and I of course agreed and there Dr. G prayed for God to guide that needle in and for these fluids to replenish my body. This way we knew EXACTLY who to thank for this much needed help - God, who is the GREAT physician!!!!

Thanks again for all your prayers :)

I love when the LITTLE things (like dr. appts) are so exciting!!!

UPDATE:Dr. G just called & he said he thought it was "amazing" that I was able to get in to see the nephrologist so soon. I told him it was the direct result of A LOT of prayers!!! Also, he's having me come in to his office right before 5:00 so he can administer an IV to give me a liter or two of saline fluid. He's hoping this will help with the blood pressure/cardiac issues. What a wonderful man, and again THANK YOU LORD!!!

ORIGINAL POST:
THURSDAY, THURSDAY, THURSDAY!!! THANK YOU LORD!!! At 1:30 on Thursday I will see the kidney doctor - WHOOHOO!!! Thank you all for your prayers because I KNOW THAT IS HOW I GOT IN SO FAST!!! When I called their office this morning the secretary didn't seem to think "as soon as possible" was going to be anytime soon. However, I called Dr. G's office as I was instructed by the nephrologist's secretary - apparently they have to call for these referral appointments - and asked for them to make the appointment. The sweet lady at Dr. G's office just called back with my appointment time! THANK YOU SCHEDULING PEOPLE!

I am in a lot of pain right now & frustrated & mad & sometimes just ready to cry. I'm sure others might be better than that - but I'm not! I keep trying to be nice to people, but it's hard. Between the pain and my central nervous system being all wonky, it's hard for me to bite my tongue or to try and words things in a nice way. I need to pray more about being sweet to poor M who gets the worst of me. He might not be sick, but he has to do more....he has to be the rock! He does (and continues to do) so much for me! He makes daily sacrifices for me and has done so for the past, well, ever since I've known him. He is the gatherer and bringer of the food, the listener of ranting frustrations, the tear dryer, the working half of our whole. He is the best life partner I could have ever found...wait, scratch that...he is the best life partner that GOD KNEW I WOULD NEED! Again, thank you God for always knowing what I need and for going before me & placing the necessary people in my life!!!

I ask that you all pray for him as you pray for me. He's my teammate in all things & he has not missed a doctor's appointment in at least 2 years. He's amazing, but he is only human and this is VERY HARD on him. As a man, he naturally wants to "fix it" and this is truly OUR LIFE, not just MY sickness or MY problem. We have both been forced to realize that we have no control over our lives - which is hard for us because we both like to feel "in control". But, we've learning, day by day, to drop everything at our Father's feet and to trust that His plan is the only plan we want to be a part of!

I just can't wait until M gets back from his meeting today and I get to tell him THURSDAY, THURSDAY, THURSDAY!!! And I'm so going to try to say it in that "Monster Truck Rally" commercial voice :)

Happy Monday to you all!!!!

A Mother's Day gift for me :)

It's Mother's Day and many are having their moms over to eat lunch or dinner or taking them out to restaurants. What am I doing? Well, I'm letting my mother do what she does best - BE A MOM! I am truly so very blessed to have such supportive parents and I thank God for them daily. So, as I type this my dad is watching golf (aka snoozing) on the bed beside me while my mom is in my kitchen cooking fried chicken, black-eyed peas, cream corn, fried okra and (if my sniffer is correct - which lately it's super sensitive so I'm thinking I'm right) homemade cornbread! Happy Mother's Day to me indeed! M is very excited about this "home cooking" and little m is running around like it's his job to keep people out of the kitchen! He loves his "grandmother's" cooking just like his daddy does!

On the medical front, so far I've had 3 doses of the Florinef but there has been no change in my heart rate and my blood pressure is staying around 83/53 when I lie flat. When I stand it goes too low for the monitor to be able to read it. We talk to the doctor again in the morning to let him know how I'm doing so he might change the dosage, who knows. Keep praying that when I talk to the nephrologist's office tomorrow that God will move them to get me an appointment time SOON!!!

Hope you're all enjoying your Mother's Day!!!

THANK YOU TO YOU ALL!!!

Just wanted to say thank you to all of you who have sent emails or commented on my posts so far. I really appreciate all of your prayers and support! I know they are what keeps my mood up when other things about me are down! So, from the bottom of my heart, thank you all for your love and concern! It means the world to me to be here in bed & be able to read your words of encouragement and love!

Ask and you will receive...

Most of you know that I have been trying to get out and to live as “normal” of a life as possible. I even took a 2 day trip down to the beach with my parents weeks ago, but that seemed to be the straw that broke the camel’s back for me. I apparently pushed my sick body further than it could go. I tried to ignore it, but my heart started acting up to the point where ignoring it was no longer an option. I got in bed one day almost 2 weeks ago thinking, “I’ll just get some rest and this will all calm down.” But it hasn’t and I'm still here in bed.

I had been living for months, maybe years, with the knowledge that simply standing upright would cause my heart rate to go to 120 or so. I understood that my heart was beating this hard to compensate for the fact that my blood pressure drops when I stand up. My blood pressure is always at its' highest when I am lying flat and it would be about 90/60. But, for the past 3+ months it has only been 80/55 when I lie down. So, it doesn’t have to drop very far when I stand up to induce a fainting spell. If I walk to my kitchen and back (which includes no stairs or incline) my heart rate can shoot to 170 or higher. My heart rate hasn’t been “normal” for years, but it is now reaching new highs and lows. Lately when I wake up my heart rate is only in the 40s and it seems to be harder & harder to "come to" out of sleep. Once it gets to 53 or so I can wake up and move better. Anyway, all of this made me realize I couldn’t wait around for June 10th to have this seen about. Many of my symptoms I can live with, but heart issues are a different story.

So, I prayed – I cried and I prayed and I cried some more. I wasn’t crying for me so much, but more for M who has so much on his plate right now. I just HATE adding anything more. I prayed that God would help me talk to M about all of this and that He would help lead us to a doctor HERE that could see us SOON. I also prayed that unlike some doctors I’ve seen, that we would see a doctor who would have compassion in his heart for my situation. I told M everything that had been going on with my heart and asked who he thought we should start with regarding these heart isssues. He immediately said he would call his G.P. here in town and talk to him. This is a man who M has known for 20 years and whom he knows to be a man with a strong faith in God. Amazingly enough we were able to get in the very next afternoon (which was yesterday).

I printed out the MANY lab reports, cardiac test results, etc., from my health history folder on my computerthat I knew this doctor would need to see since I have never been to him before. As I did this I prayed again. I asked God that this doctor would be able to SEE how much I needed his help. And let me tell you this, God answered. Not in the way I had hoped, but He got the point across for sure. As we walked back to the exam room, which was at the end of a short hallway, the nurse had to stop a couple of times and wait for me to catch up. When I got there she took my pulse and it was 150. I crawled onto the exam table trying to get as flat as possible to rest my heart. The noise in the waiting room had not helped me. My central nervous system is NUTSO right now to say the least. I cannot handle many things, noise being one of the many. Also, when my heart rate shoots up, the body reads it as stress. So, when my brain gets the message that my heart is racing it starts to send out a panic feeling and I become pretty anxious and jittery. This is when the muscle twitching that I have daily really starts to show itself in full. I began jerking and twitching everywhere. It seemed my chin wanted to touch my right shoulder over & over. My legs would jerk. My arms shook. I tried to calm it down but was unable to do so. The doctor came in. He saw ALL OF THIS. He also saw me drink 28+ ounces of water in an effort to calm my body down. I don’t claim to understand my body, but I crave water and salt like they are candy. The water seems to help get my heart rate down???

Anyway, I had one big VISABLE FREAK OUT while lying on that table. He took my blood pressure and it was 79/54 when I was lying down. He TRIED to take it when I stood up but it was dropping so fast that he could only get a reading of 63 for the top number & the bottom number was too low for him to hear apparently? He listened to both M & I for over 45 minutes as we told him what we were most concerned about. He listened and he asked questions. The doctor had talked with M a couple of times over the past few months so he already knew about the Lyme idea and our impending visit to KC. He even has a physician friends whose wife was diagnosed with Lyme and she had to go out of state for treatment as well. So, he knew we were trying to just control any life threatening symptoms until we get to KC. This doctor, Dr. G, was amazing. What made him so amazing you ask? Well, simply put, God did. For the first time in my life I heard a doctor say to us, “I am going to have to pray on this to figure out who is the best person for you to see to get this under control. I want you to go to someone who will be open-minded and see you as a puzzle they want to figure out!” GOD WAS ANSWERING OUR PRAYERS! It was killing my body to go through such a violent spasm, but NO DOCTOR could see that spasm and NOT realize that I was dealing with some serious health problems.

He said he thinks my kidneys, not my heart, are the real root cause of the crazy heart rate. For some reason my kidneys are not retaining fluids properly and they are not keeping a proper balance of sodium, potassium, magnesium, etc. Years before I asked a few doctors about the possibility of seeing a nephrologist (a kidney doctor basically) after I had passed 80 kidney stones in 13 years, but none of them seemed to think my kidneys were to blame. They said I was not drinking enough fluid. I've now passed over 100+ stones and I drink over 60 ounces of water a day now. My kidneys hurt constantly and I just always assume it's just another stone. Apparently there could be more to this pain that stones??? FINALLY I will be seeing a nephrologist!!! Dr. G also said that I can call anytime and come to his clinic where he has the equipment to hook me up to an IV and just give me bags of saline if my heart refuses to settle down. For now he put me on Florinef which will hopefully help my body retain fluid. By doing this my blood pressure should raise enough to keep my heart from having to work so hard.

The down side is that I came home exhausted and still in full body twitching mode. I cannot explain how much that wore me out! I honestly looked like I was having some sort of seizure and it was hard. I went to sleep around 11:00 and slept for 12 hours. That’s something I have not done in what seems like years (and yet I am still being told I have narcolepsy...odd thing, huh?).

I wanted to post this all yesterday but it has taken a good 24 hours for my body to try and recoup from the episode. I'm posting this with the knowledge that I'm still not thinking clearly and that I am having a difficult time just typing. But, I need prayers people. I have 2 doses of Florinef in me so far and we'll see how that helps out. I will be calling the kidney doctor on Monday to set up an appointment so PLEASE pray that I'm able to get in to see him soon and that God will give him knowledge, patience, and true concern for my overall well being. Pray that he will be open minded and will hear my story. Pray that he will help figure out how to get my kidneys (and adrenal glands as well more than likely) to function better at least until I can get to KC!

M and I appreciate all of your prayers. We trust God's plan. We have seen God answer our own prayers almost as soon as they are out of our mouths. God did not "make me sick" but I am so thankful that He is using this really bad time in my life to teach me to draw closer to Him. If that is all I learn through this journey - then I will consider this "bad time" as time well spent!

I hope all of this made sense. It took over two hours to get this together...geesh! But thank you all for caring enough to read it! I promise not all of my posts will be as lengthy!!! Well, that's probably a lie...if you know me at all then you know that me & rambling go together like peas & carrots :) I pray that you are all doing well! And HAPPY MOTHER'S DAY to all my friends and family members who are moms! You are all awesome in my eyes. Especially my own mother who still comes over to take care of her sick 34 year old "baby" :)


NOTE: The picture at the top of this website is actually from late November and is one I used for our Christmas cards. As my facebook friends know, the picture I put at the bottom of my first post was actually taken 2-3 months ago. So, here's one of me today - in all my un-showered glory :) See, how lucky is M to be able to see THIS every day??? Heehee!!! I may feel bad, but I will always try to smile for a picture :)