Its after 1 in the morning and the mind won't leave me alone. It has been unpeaceful for a couple weeks now and I think its compounded by Christmas knocking on our door. It has the ability to really make one contimplate or evaluate their life and where it is. I find myself extremely lonely and dissatisfied with where I am. The thought that keeps coming into my mind (with thousands of others) is how I never, in my 39 years of life, ever dreamed, imagined, even thought possible or considered that before I would turn 40 I would be waiting to hear on a disability case for myself, fighting to keep my head afloat as I slowly, day by day watch my body deteriate and gradually lose more and more independence in what I can do physically and mentally. Isn't this supposed to come later in life? Much later?!?! It wasn't my plan and I have fought it but I'm losing the ability to do that as well.
As I watch what seems like the rest of the world "moving on" its almost an out of body or fly on the wall kind of experience where you watch but you aren't a part of it. This adds to the loneliness. As I look at the relationships in my life or not in my life, I am saddened and full of questions and filled with pain. Its that kind of circumstance where I'm sick with faculties getting less and less each day, so when I have interactions with people I must look blank faced, and since the cognitive takes so long or doesn't happen at all I also must come across as anti personal....lacking interpersonal skills. This hinders relationships. But I'm not getting any better so this gets worse and the relationships further deteriate. This coupled with people who gave up and became apathetic a long time ago=lonely. I am thankful for the few relationships I have that encourage me and help me feel like a vital part of life and not just some forgotten, incompetent, worthless piece of trash that is easily discarded.
Tonight it has been the worst with the mind being relentless in its questions and feelings. I figured I could lay in bed and get the pillow all snotty as I am tormented by these thoughts that won't be resolved tonight, or I can get up and be productive....somehow. Part of that productiveness is venting my thoughts and feelings. Chris thinks some of this is the antibiotic (we've seen medicine do this before. Heaven knows we have been on enough) but I think a big part is the fact that the body is gradually starving to death and therefore the mind isn't getting the nutrients it needs to work properly. This on top of whatever illness/disease I have does not make for a happy recipe for healthy relationships in my life. No, its a vicious cycle and quite frankly, it sucks. It sucks to be 39 and not be the wife my husband needs or the mom my children needs or be an active part in my church or be able to meet the needs of friends who are hurting and fighting for their lives as well. Oh how I long to be well and a vibrant part of life. Oh how I long to not be taken care of more then I can take care of others. Oh how I long to turn 40 and see the other side of this stuff and to dance and shout and sing and function and meet the needs of my husband and children. I have all but lost hope for that. I am so drained and exhausted from all this that I have lost hope in seeing that day. I shared that with a dear friend and she encouraged me by saying, "that's okay. Thats what friends are for to take up the prayers and pray for you when you can't find the strength to do it anymore."  The fact that nobody understands or gets it makes it more lonely. When they just give up on you it makes it impossible to continue fighting.
I am a fighter. Always have been. But lately that is one of my questions. Why do I fight? Has it really served me well to fight? Have I gotten anywhere? Would it be better to just lay down my fight and surrender? I worked this over and over in my mind one day. If this is where God wants me....if He has no plan to bring me to wellness, then shouldn't I just surrender and accept it? By not accepting it, and by continuing the fight, am I acting disrespectfully to Him or ....not sure what the word is I'm looking for here. Is it wrong to continue to fight if this is His plan for me?
I'll tell you, it is no fun feeling like you are alive but are a burden to everyone around you and that you are just tolerated but that everyone would be freed if you were gone and that there is nothing you bring to the table of life....nothing...and if you did, it would be quickly swiped away by others at the table that don't believe you can do anything.  Its an awful and tormenting feeling. A useless feeling.  Why haven't I given up? Isn't it humanly natural to give up under those circumstances? What keeps one person going and another to quit? Don't we all hunger to be useful?
Just my thoughts on a sleepless night when I feel the mind is winning control and I feel unable to combat it. I don't have the strength to fight it off and sleep is unable to give me a few hours of peace and escape. I believe my friend is right in that we need others to fight for us in our times (in my case, years) where we are so tired and exhausted and weak that we can't fight for ourselves. But what do you do when it feels the world has turned their back and given up on you, and the few that haven't are asleep? :-0  Anyway,.......

What Was Accomplished?

In spot where I need to blog. Partly to document what has happened since I forget most things and partly as a way to work through how I am feeling. Again, if you have difficulty with raw emotion, someone being real and putting everything out there, or will have difficulty taking things personally, please stop here.

Chris went out of town Sunday afternoon, October 14th to a pastor's conference. We didn't have a menu set up for the week. I managed to get dinner made that night and did baked fish rolled in cashews and almonds (that were put through the food processor) and green beans and rice. The meal, to the best of my knowledge was "legal". Yet, as usual, it upset my stomach. Monday morning, in trying to trick my psyche to eat because that is what I have to do these days (it has to be fun, special, unique, new, etc) I decided to juice. The doc had said I could introduce fruits in a little just to get something in me. So, I was excited to juice a peach, pear, grapes and blueberries. I took two swigs and couldn't finish it. It didn't taste right, it smelled funny and I completely rejected it for some reason. I decided I was done for the day. But wait, we have dog training that night and with Chris out of town it would be easier on me if we just ate out afterwards at Chili's. We have a friend go with us and she didn't want to go and I didn't want to take two cars (I love talking with her and having her company) so I decided I would just fix something for the girls at home and thats it. Hotdogs are easy and require a whole lot of thought, time or energy. I can manage that. So I did, but that meant I didn't have anything to drink or eat the rest of Monday.
Tuesday, I just had water and everytime I drank a little bit of water, it sent me to the bathroom where I am sick to my stomach and spend the rest of the next hour going back and forth to the bathroom. Again, I tried to set something up to I would eat. Tuesday nights Maddie has dance and Becka has gymnastics and with Chris out of town I needed something fast. So, I thought I would grab a stuffed crust pizza on the way home and I had planned on "cheating". It wasn't great but at least it was food. We got home and I was waiting on Madilyn who was being brought home by a friend and I filled up my glass with decaf tea and a little agave and took one sip and I was sick to my stomach for the next hour. After that, not interested in food and gave up and decided to go to bed with the girls.
Wednesday, was the same story. By Wednesday I am in bed unable to function. The weird thing is I felt good digestively (other then the diarrhea). I was blown up like a beached whale hurting from pressure and pain all around the rib cage and stomach, and I wasn't nauseated. I was fighting killer headaches and weakness. I couldn't get up without the heart racing and a shower would have wiped me out completely.
Chris came home (poor guy) to all this Wednesday evening.
Thursday morning he calls the doc and she told him something was definitely wrong (you think?) and tells him to take me to the ER to get fluids and that I was scheduled for an endoscopy Friday morning at 11. We pack up the girls, ship them to Grammy's and of we go. We decided to go to the ER at the hospital where her office is, thinking it would make it easier for the ER to consult with her, my doctor, who knows everything about me and what we have been dealing with.
The ER was great other then the extremely small and hard half bed I had to lay on. The doctor came in, Dr. Smith, and within 5 minutes said he wanted to admit me. He explained he didn't feel comfortable with just giving me fluids and sending me home only to stay the way I was. I was horribly dehydrated and hadn't eaten in 4 days. I was asked if I wanted meds for pain and initially I said no. But my head was splitting so badly and I was afraid it would kick into a migraine and then I would be completely sunk. Also, my lower back was starting to really hurt, I figured from the rotten hard half table I was on. I was moved to a better room and bed and I asked if I could have something for my headache and I was given morphine and zofran meds through my port they accessed (yeah!! Love my port. It makes things so much easier for all involved). Blood and urine came back fine (if I remember correctly), I already had a bag of saline down and was working on the second when Dr. Smith said he spoke to my doc and she was leaving it up to him and us as to whether we were admitted or not. We talked it over and decided that at least at the hospital they could help me and I would at least be hydrated. So we agreed to be admitted. We were told that they were filling out registration papers to be admitted. Before being transferred to my room I finished the second bag of fluids and they started a bag that was potassium and sugar. Wasn't crazy about the sugar part since we are trying to eliminate all sugar for the yeast over growth.
 That night I was rolled to the fourth floor to my room. Chris left to take care of things at the house and grab what was needed to spend the night at the hospital. A friend of mine happened to ask if I wanted her there and not wanting to be by myself because of memory, comprehension problems and past experiences that causes me to believe every patient should have an advocate, I said yes.
The doctor on call came to visit. An Iranian (there was not one English speaking nurse or doctor on this floor) dude who kept getting paged out of my room. He asked questions as if he was having to figure things all out on his own from scratch. He would ask a question, I would answer and then he would ask another question that required the same answer. He said he wanted to do a blood test to check for acidity....didn't quite understand that, but then again, I understand very little any more. I'm trying to trust that they mean well and are trying to help me. I tried to communicate all that was going on related to my stomach and throat. I didn't go in telling anyone about Lyme because I was there for my digestive issues, but then they would ask why I have a port and I would have to say for the treatment of Lyme. Oh how this results in a ray of responses. People are either inquisitive (they usually not educated on Lyme but are open minded, or they don't know, don't ask questions because they think they know it all....in reality they have the wrong opinion and knowledge about Lyme=closed minded). I don't remember much else about this doctors visit except his bedside manner with me felt very awkward and I didn't feel like I was a participant of the conversation or listened to, just tolerated. The next thing I know I am being switched off the bag of potassium/sugar back to saline because this doctor doesn't want me on it because you shouldn't be on it unless your potassium is low and that the ER just automatically puts people on it when they shouldn't. hhhmmmmm. Then, the night nurse comes in with her med cart (I came to resent the med cart particularly when it was accompanied by the night nurse) and she says he wants me on protonics.... and lovenox, a blood thinner. I am confused at this point because when the medical facility that I was scheduled to do my endoscopy at the next morning (which got cancelled as soon as I was admitted) called to go over information, I was told not to take aspirin or advil or any blood thinners at all till after the procedure. So, I asked the night nurse why the blood thinner since we were still planning to do the procedure. only at that hospital now the next day, and I had been told not to do blood thinners. All I would get was, "I don't know". The lovonex is a shot in the stomach....joy, joy, yippee skippee. The protonics I think it was explained to help with the stomach cramping. Did not quite understand the necessity of these two medications...just felt a red flag of "something isn't adding up".  I was consistently given morphine and zofran. I now was unable to urinate without extreme effort that made me feel like my blood vessels were going to pop in my head. I asked the night nurse if it could possibly be the morphine and I got, "I don't know". My back continued to hurt but then I would get a dose of morphine and it would be fine. However, late that night (around 11 or 12) I felt my back and my head start up and it came on fast and furious. I was due for another dose if they were going to give it to me. I got up to try to urinate but couldn't go and every time I tried the pain kicked up a notch to the point that I gave up trying to urinate and made it back to my bed. When I hit the bed I was in so much pain I couldn't find a position or hold still. It was the worse pain I think I have ever been in and I couldn't explain it. I was given the next dose of morphine and within 30 minutes it calmed down and I found a spot I vowed not to move from for a really long time. I was pulled from all liquids and food (ha!) at midnight due to the endoscopy the next day. Also, the night nurse raved about my doctor and how her husband used to see her but said that she doesn't come around the hospital any more.
The night was rough with our room being across from the nurses station and they "partied" all night long. I kept telling the night nurse my head was splitting and she just kept saying, "hhhhmmmm, I'll call the doctor". I longed for 5 a.m. when I figured my doc would begin making rounds and the night nurse would switch out for the day nurse. I mentioned my head splitting again and she said she called the doctor twice last night and he never returned her phone call.  That made me feel safe and secure. 8 a.m. painfully and slowly rolled around and the night nurse was still there. Ugh. Finally, the day nurse came in. She said that a call had been put in to my doctor for a consult. Chris had also called her office. I explained to her that I couldn't urinate and could it be due to the morphine. She actually looked at me and said yes and lets get off the morphine. Yeah! Thank You! I also explained that my head was splitting and she  asked what I normally take for headaches. I said Maxalt or Cambia and she said she would talk to the doctor and low and behold I had a Maxalt in my hand and had relief within an hour.
Somewhere between the night and day nurse and due to the severe back pain episode the night before, the doctor scehduled a CAT scan of the abdomen and pelvis. I was given barium to drink (blah) which was the most I had to drink at one shot in at least 6 days. I was determined to get it down and keep it down. Somewhere around 11 and noon I was picked up for the CAT scan.
Before going down for the CAT scan, after the hospital not getting a call back, and Chris not getting a call back, Chris went up a couple floors to my doctors office to talk to them. They informed him that my doctor does not have privileges at this hospital and that her colleague would be down to see me. Ugh! How frustrating. I don't want to see her colleagues. I wanted to see her who has been working with me since July and knew the whole history and what was going on. So, were we going to do a scope today or not? Crazy!
Down at the CAT scan the technician started to explain that she was going to put dye in my iv and I explained I didn't have an iv but a port. She said something about she would have to hand push it in and wouldn't get as good as picture with the port doing that as she would with an iv. Well, I want good pictures so things are clear as to what in the world is going on. She started the tourniquet after looking for a good vein and then stopped. She explained that she would only be able to do it if my port was a power port. I said it was and then she said it would have to be a Trillium kind and I said I believed it was. She asked if I had my paper work for my port. I said my card for it was in my purse. She sent my husband to get it and started to hook the dye up to my port to be power infused. The CAT scan went quickly and I was back to my room. We had a few minutes before the doctor of the day, came and things took a turn for the worse. Still
Dr. Xie came in and walked up to my bed and started explaining that he felt that what was probably going on was something chronic but that they were waiting to get the CAT scan results. He said some other things but it was when I tried to communicate what was going on with my throat that things turned south. He looked at me very intently, coldly, and said he had talked to my doctor and she shared that the endoscopy a year ago was "unremarkable". I about fell out of bed. I looked at him intently and said, "really? because i have the picture and the report that show that the esophagus was so inflamed she told me she didn't know how I got water down." He responded by saying, "Well, she didn't share that with me." as if because she didn't share that with him I must be lying. At this point I hit the wall. I had tried to communicate, cooperate, trust, follow along up to this point and I hit my limit of not being taken seriously, or listened to or helped, and lied to and treated like I had been admitted to the pysch ward instead of the medical floor. I felt trapped. I was there to get help and I can't leave until I get help but they won't listen to me and take me seriously so I'm never going to get out of there. I rolled over. He left the room and I spewed exactly what was on my mind including what I thought of Dr. Xie. I had had enough! We had been at this hospital for 24 hours, now 5 days without food and I had been cut off from water over 12 hours ago (not a pretty picture) and we were not any closer to eating and getting to the bottom of what was going on. We were basically just "hanging out". I looked at Chris and said, "Get me someone I can ream up and down now!". We have been in this spot before where we were treated unreasonably and so we are familiar with Patient Advocacy. He got them on the phone and within 10 minutes Brian from Patient Advocacy was in my room. Chris shared a little of what was going on and then I shared that I didn't feel listened to, that I felt I was treated as if I was stupid, all the contradictions, etc. He went on to share that we were not actually admitted to the hospital. I about flew of the handle again. What? He shared we were on the observation floor. I explained to him that Dr. Smith in the ER said he wanted to "admit" us and that he was filling out papers to register us to be "admitted". Did that sound like the "observation" floor? He said that there wasn't much of a difference (obviously there was) and Chris made a comment about insurance and Brian explained that on the observation floor you are billed by the hour and when admitted you are billed by the day. No wonder they wanted to drag their feet. He also went on to say that my doctor does have privileges in that hospital. Another contradiction. I asked him if he could possibly fathom how as a patient all the contradictions could make one not feel confident in the care they were supposed to be receiving. I told him that nothing had been done shy of the CAT scan and that I could just as easily be miserable at home then at the hospital where I am not listened to, treated seriously and the communication is non existent. I told him that if they weren't going to help me then please discharge me now. He explained he would make some calls and he brought up Dr. Xie and I explained I did not want him as my doctor any longer...didn't want to see nor wanted him to step foot in my room after the way he treated me. He explained that in order to do that Dr. Xie would have to talk to the group of doctors he is a part of to get one of them to take the case. Hhhhhmmm. let me see if I have this straight. He has to talk to the others in his group, aka tell them about crazy lady on the fourth floor and convince one of them to take my case. How is this in my best interest?
Brian walked out of the room and just outside my room was another lady all dressed up with a huge grin on her face as she watched him walk out of my room. I know they can hear through the door because I had to listen to the nurses all night long. It wasn't 2 minutes before she knocked on my door. She was also part of patient advocacy. I figured it wouldn't hurt to tell her either so I shared everything with her. She said Brian was making phone calls and was right on it. She left and he walks back in saying he had spoken to Dr. Xie and and he was talking his phone rang. It was Dr. Xie saying that he had spoken to my doctor and that she will come down this afternoon and do the scope. The best news and the most help I had received since the fourth floor. It didn't change how I felt about him.
It wasn't long before the day nurse came in and said she had good news for me. She said that they would be there shortly to take me down for the endoscopy. At about 2:15 I was wheeled down to the endoscopy part of the hospital. They must have "Lyme" in my chart because two nurses started talking to me about it. I don't know why it throws me off guard each time. Maybe because I never know how its going to go. One of the nurses was very interested in talking about it because her daughter had been diagnosed with it and was now in Chicago being treated. Everything was set up (wasn't much and didn't take much time) and another nurse came to wheel me back and she had a huge, goofy grin on her face. I asked jokingly why she was looking at me like that and she commented on my blanket (I had brought my own blanket). I guess they don't see that very often. But she kept looking at me funny. She wheeled me back to the room and we waited from 2:30 to after 4:00 for my doctor. I didn't mind. I would have waited longer. Just knowing she was coming was peace enough. I dosed in and out and then she showed up. I was a little nervous as to how she would be after all that had gone down but she was just as friendly and cordial and caring as usual. I briefly explained this was day 5 of no eating and that even drinking water made me sick to my stomach. She mentioned that when her patients are admitted they always see her colleague Dr. so and so. I explained that it was just explained to us that we weren't even admitted. She came up to my head and said, "Elizabeth, nothing is going to happen over the weekend. Do you want me to discharge you?" Absolutely!!! and the next thing I know I waved goodbye as I went under.
The doctor explained to Chris that the scope showed the throat, esophagus and stomach to be inflamed and that there was bile in the stomach that they pumped out. She gave Chris a prescription for Carafat, a liquid I am to take before each meal to coat the throat and stomach.
I woke up back in my room. I do remember hearing Dr. Xie in my room. He handed Chris a prescription for Carafat (pills, not liquid, and 3X a day, not at meals....idiot) and said I was being discharged. Incredible!! It was explained it would take a while before all was set to discharge me. They had to bring someone up from downstairs to unaccess my port because no one on that floor was certified to do it. All of sudden I was told I could order dinner. Really? Nothing had changed but all of a sudden I can order food. Chris ordered chicken broth, green jello, fruit ice and chocolate pudding (I knew that wouldn't make it down). Chris left to transfer the girls from Grammy's to God Parents for the weekend and take care of a couple things. I did not like being left alone after all that had happened. I wanted a witness to everything and more importantly, an advocate.
The day nurse gave me the carafat, in pill form and explained to me that it was supposed to coat my throat and stomach. I asked her how a huge pill is supposed to coat my throat and stomach and she said, "I don't know". Doesn't anyone read my chart that says I choke on things? My "dinner" arrived by a tall, very thin lady who wouldn't look at me and very grumbly said the words you knew she was trained to say, "have a good night". I look at my tray and there is the chicken broth, jello, fruit ice and pudding. Wait! What is this? A bit styrofoam cup with a straw in it. What could be in it. Chris didn't order sprite or anything to drink. I picked up the cup and looked through the top and the bottom quarter of the cup had ice and there were brown spots all on the inside of the lid and cup as if this cup had coke or soda in it at one time. Um, gross. Its a used cup. My day nurse came in and I told her I wasn't sure about the cup. She picked it up and immediately said, "ewe!!!" I guess she gathered what I had gathered. She took it to dispose of it, but specifically outside my room, but as she got to the door she turned around and asked, "Are you sure one of your guests didn't leave this in your room?" Really? Please get me out of here!!!! I very nicely, but firmly said, "yes." I am sick, not STUPID!
The broth actually tasted good as did the jello.
Night nurse rolled in. Ugh. Same as the night before. I am sure she has been updated on the happenings of the day. 3 nurses from downstairs showed up to unaccess my port....3 and then the night nurse walked in....make that 4. Afterward, the night nurse said she was going to go ahead and get my discharge papers all done so when my husband showed up we could just leave. Why, thank you....I think. Next thing I know she walks in with the meds cart. What? She said, "I have your meds" and I said, "what meds?". She had another carafat pill and the third lovenox shot. Um, I don't think so. I told her I had just taken a carafat with dinner. She explained that I am supposed to take it three times a day. I said, "um no, it was explained to me that I was supposed to be a liquid and I was supposed to take it before meals. She insisted that the doctor wrote it for three times a day and the next dose would be in the morning. Of course, this is the ignorant doctor that I asked to be removed from my case.  I made some comment about hoping she didn't have to deal with me choking on it. It did get stuck in the middle of my throat. She then got the shot ready and I asked why I needed it. She said she didn't know. This is why I like an advocate around. Sick people don't have the strength to stand up for themselves and defend themselves, and they aren't taken seriously.  I figured and proceeded to inject it in my stomach where the last one had been injected that morning. I figured I was on my way out, I had fought my battle and didn't want them to change their mind in discharging me, only to really send me to the pysch ward. So, I bit my lip and counted the minutes.
Finally, discharge papers came, I got dressed and waited for Chris. 10:00 that night we were out of there.
It was a weird ride home because it felt like nothing had been accomplished. I went in for help and came out in basically the same shape as when I went in. I was all blown up and hurting from the dinner I had. I got home and weighed myself hoping it didn't show more weight loss. I had lost 6 pounds in 2 days before going to the ER. I was shocked. I weighed 129 going in and now weighed 136. How is this possible since I haven't eaten anything? Chris rolled his eyes at me and said, "its the gallon of liquids you received." Wow! This was amazing.
I did get fluids and I am thankful, and so is Chris, that I was at the hospital (what ever status I was) when I had the huge pain attack the night before. It was awful and I'm not sure what we would have done at home. Haven't had anything like it since,....not even an inkling of pain in that area. The best way I can describe it is its as if I passed a kidney stone. Who knows. The whole 36 hours was crazy.

Its now Wednesday. I have worked through some of this. I don't get it or understand it. We aren't much better off. I finally ate something Saturday night (almost 6 days of no food). It did what food normally does which is blows me up like I swallowed a bowling ball and there is so much pressure and pain and nausea and yucky feeling. I had some of a piece of grilled tilapia on Sunday night....samo, samo. We put a call into my doctor Monday and Chris was told that before we come in and sit for hours to see her, she wanted to review everything and would call us back. Bet you can guess what has happened. Yep! We haven't been called back and Chris has called again, and again. I feel as if I have received the boot. If we have, I have no where to go and have no idea what we will do.
The last couple days has been crazy because yesterday I had a huge ravaging appetite. Anything and everything that a normal person can eat, sounded good. I actually wanted to eat but was scared to death to eat because of how I feel afterwards. I had a little grilled chicken and green beans for lunch and left over grilled chicken and black beans from chili's last night for dinner. Small portions but some food. It tasted good also. The whole last week things didn't taste good. Today, I have no appetite and don't even think about eating. I have a clearer mind today but am so sluggish and blah feeling. I can't explain the difference in the mind though but after experiencing today it almost as if the last couple weeks I have been in a fog and today the clouds lifted and there are blue skies. Don't have a clue what it means or why or how....just an observation (and I'm on the first floor :-)  ) I was in bed most the afternoon. I get to a point where I can't move or do anything else. The weird thing is I can usually sleep but today I feel wide awake, alert. There is definitely some things going on but I can't explain them. I can only try to describe them in hopes someone somewhere will listen and go, "ah ha! I got it! Its....." That is my hope and dream.
If we are ever asked to go to the hospital again it will be difficult. I definitely won't go back to Memorial Hermann Southwest again. But there is no guarantee that any other hospital will be different. After this experience I decided that it is a curse to have Lyme. Not a good feeling. I feel I will forever have a Lyme spot on my forehead. Only God knows what was and is being accomplished.

Not Adequate

I need to write tonight as I can't sleep and want to just document what is going on. I don't think anyone reads these posts anymore so Im not writing to anyone but just need to get some thoughts and feelings down on paper in hopes for some relief. If you can't handle raw emotion or someone who is trying to work through things emotionally, please stop here and don't read.

There is no way to back up and catch up on here all that has happened since I last blogged. This frustrates me but is what it is. I feel I am going backwards and down hill. I feel that after 15 years of this disease wreaking havoc on my body it is now taking my mind. The last couple weeks it has really become more and more evident just how non functioning my mind is becoming. Tonight I came home from my attempt at handbell practice feeling so inadequate, unworthy, incapable, and the list goes on. There were some comments made tonight to me that hurt my feelings extremely and just emphasized my feelings lately that I bring nothing to the table, I have nothing to offer. All I have ever longed for was to be useful and used by God. I feel I have passions but am unable to do anything about them. It frustrates me that He would give me these passions, desires, longing, strong feelings towards things and then not be able to do anything about them. It is so difficult to look normal but have nothing inside me be normal. I am so tired of others expecting me to be normal when there is nothing inside able to function normally. I am at a low spot tonight feeling so inadequate as a wife and a mom and as a person of society. Why am I here? It is abvious I don't bring anything to the table. I feel I do more harm then good. My opinion, feelings, ideas, don't matter. I'm expected, as the sick person, to have it all together, react, feel, function, fix, love, forgive, act, all normally.
Tonight I had the urge to go out to the office and burn all my music. I can't teach it anymore, I can't play it anymore, share it with anyone, it doesn't appear to share any part of my life anymore. Just get rid of it and call it done. This is one area where I feel God has given me such a passion but I can't do anything with it. I can't teach it which I so thoroughly loved! I have tried to teach my own girls but get things all mixed up. Things I have know for over 30 years. I hear a song and it just touches my soul and I love worshiping through it and then I have a desire to share it in church hoping it will encourage others to worship and go deeper. I don't like "performing". But I love sharing. But I can't. I have sung (I am not a professional singer-my voice designed just for God's enjoyment) and I have played and sung in church twice. All by the grace and leading of God. But I feel I am just tolerated or pitied and that it did nothing to bless God or encourage anyone else to worship Him. I am a perfectionist which makes this disease even more dibilitating because I can't be "perfect". This last Christmas we gave gifts of ourselves or gifts that represent our family, what we like, who we are, etc. I gave a cd to a chosen few of my piano playing, not because I am cocky and think I'm great or worthy of a cd, but to share and bless those who got it. I would rather ask for them back then have it sit in homes completely unlistened to and or judged. I felt led to do the cd, I thought I was being obedient (I was actually led to do it many years ago but didn't and thought I better put something together now before I can't at all) and it was a risk to put myself out there. I won't do it again.
I don't read anymore. I used to enjoy reading, including my bible. But because I don't process very well, I don't understand what I am reading most of the time and I can't keep information straight and I can't retain it. I try screaming out or reaching out or try telling people that I don't remember things and I am laughed and belittled because they have moments just like mine. I don't process conversations and I sure don't remember them. I don't put two and two together anymore and all this has effected relationships because people don't understand and they take it personally, even though they know I am sick, that I didn't remember something or put two and two together or I stare blankly at them while in conversation as I don't comprehend or compute the conversation.  It is completely frustrating!! I feel like I have brain damage and I feel with each passing day I lose more and more. I have prayed so many times in my life for God to spare my brain, even through this disease, that He wouldn't allow it to take my mind, please spare me my mind. I try to do things to keep the mind working and I have seen where doing school with the girls has kept parts of it from being completely gone but it still doesn't make up for what doesn't work. There is no guarantee that if the digestive system ever does "kick in" and I start absorbing nutrients again that my mind will bounce back and recover...any of it. I've been waiting for 2 1/2 years for a corner to be turned and things to start healing and recovering. I'm losing hope it will ever happen. I don't possibly see how this benefits God, or brings Him glory when I can barely understand His word and wanting to study it but feeling so frustrated in doing so.
I never thought, and no one would understand this unless you have experienced it, that losing my hair would have such a profound effect on me. But it is emotionally debilitating to take a shower and see locks and locks of hair fall out. I can't even begin to explain how it has effected me and yet with each hand full of hair that rinses off my hand and falls to the drain, I feel bits and pieces of me are going down the drain, figuratively and literally.
Its a daily battle to function. To just get up and be what I need to be for my girls and debilitating to go to bed at night knowing I have failed again and again in being what I need to be be for my husband and for my girls. There are days, like yesterday where it looks like all I'm doing is laying on the couch being lazy playing on my phone and yet its all I can do to be up and all I can do is push a few buttons on my phone. Don't ask me to make decisions...I can't. Don't ask me to do anything...I can't. But simple games on my phone...at least there I might accomplish something...how pathetic is that. How I would like to accomplish a camping trip with the family, or dinner most nights for my family, bible study, or a book to read, or a scrapbook, or wait....a clean house once in a while where my husband doesn't have to look for clothes on the floor or in a basket in the laundry room.  It is depressing to think of how I used to be and how I am today. I used to manage a classroom of kids (choir....big classes). I used to teach private piano. I used to keep a clean house with laundry done weekly...not just washed but put away for everyone. I used to keep a clean kitchen. I used to cook and plan meals and was able to grocery shop. I used to be able to multi task without frustrations or feeling overwhelmed. Now I feel like a 4 year old that is easily over stimulated with one task and get frustrated if you vie for my attention at the same time I'm trying to focus on that one task. I used to have a great memory...not my husbands by any means ever, but a great memory.  I could remember names and I didn't have any problem remembering what I was headed to do and my checklists weren't to remember things but to mark off the many things I did. Things don't get marked off my lists any more.
My how things have changed.  But I am just like everyone else. Everyone experiences all this so I am supposed to feel normal and better about it all. I guess everyone else is able to handle it better then I can. I am so thankful for the friends I do have that have stuck with me through these last 3 years and have encouraged me and supported me and not given up on me, judged me enough to have nothing to do with me but have stuck it out and loved on my family.  It may be the glue that God has used to hold me together.  But there is no way I could have gotten this far without God and the husband and two kids He gave me. I just wish I had more to offer them and I continually pray for God to guard my kids from my short comings and inabilities.
My crying has slowed down and hopefully a lot of my thoughts are on here and won't cycle back and forth in my head too badly now and I can fall asleep. Nothing worse then a sick person who can't eat much and hasn't had enough sleep. I feel I am nothing, an empty shell and I don't feel God filling it to use it. Emptiness. Hollowness. Complete worthlessness. No where near adequate for anything. Complete failure. Maybe at some point the disease will take enough of my mind that I won't realize any of this and won't feel it anymore. Ahhh, what I don't know? Complete bliss.

Inconvenience vs. Blessing

I'm at infusion. I can't believe I am starting the 4th week of coming everyday and doing two antibiotics, one of which was marked as "allergy" for the last 7 years. I have had days where it has gone long and I have itched. We have determined that Benedryl through the port does not agree with me at all. So, I do what I can to avoid reaction to this antibiotic so I don't have to have the Benedryl. They can also give me another medication for reaction (decatron?) but it is steroidal. From our research in the beginning, steroids is not good for Lyme but quite bad. However, after our two bouts with the Benedryl not agreeing, and me being pretty adamit about not doing the other (I really don't care to take anything that will encourage the little boogers), Chris found where, if you have to do it, that they prefer you be on antibiotics. Either way, I don't care to have to have it but I also don't want the antibiotic taken away because I couldn't "tolerate" it.
IGenex test came back positive. This is all I know for now until we meet with the doctor and get more specifics. The important thing is that its still positive and therefore she stated we would continue treatment. The Lyme symptoms have really been apparent in the last several weeks. This is frustrating but I am hoping the strong treatment is just bringing out the Lyme and its being killed off with treatment. That's how I choose to look at it for now, but it does nag at the conscience that all the tests will point to remission and I will be stuck with these symtpoms.
Today, yes today, I finally found a lab that may know what they are doing and I will get the other test done this week. Which leads me to my thoughts for the day: Inconvenience vs. Blessing.
I got up early this morning after a rough nights sleep and left the house so I could hit a LabCorp to have two orders of tests done and so I could get to my 4-5 hour infusion, get it done, and get home with my family. After 2 different labs, phone calls and driving around, and a couple hours chasing a place to get this test done I got an answer. Inconvenient, yes. Pain, yes. BUT, in the process I thanked God for a husband that is willing to be home on his day off and do school with the girls so I can take care of this and do this. In the process, I was able to answer several texts from people and listen to a friend share her frustration and be there for her at least by phone. I have another friend whose daughter is having a surgical procedure today and I prayed and texted her that I was thinking about her and praying for her.  I was able to "touch base" with several people=Blessing! Lyme has been an inconvenience but also a blessing. Lyme has been very difficult and challenging but very rewarding. Lyme has cost us so much but I have gained so much through it. Through it all it has transformed me both cellular and in character and the way I think. I have been forced to slow down and not do what I thought I wanted to do but in the slowness I have heard God and felt Him tug and pull on my heart. All this and more would not be possible if I didn't have Lyme. I love being slowed down and yet given an ounce of energy I find the old self quickly rear up and want to run around with my head cut off. For now, there has to be a balance and I have to ration my energy and strength.
Saturday was a perfect example of this. Chris scheduled this youth event called "Dinner for 10" where there are 2-3 adults and 6-7 youth, females at our house and males at another house. I took Maddie to dance, came home and started cleaning house and cooking for the evenings event. I had planned a nap, which is so vital to me surviving this kind of activity, but it didn't happen. In the midst, if I'm not completely knocked down with a migraine or how I feel, I don't realize I am over doing it as I bask in being able to have a taste of productivity and "living". But as soon as I slow down or sit down it all hits, and then I am down the next day completely. Is it worth it? Yes! But I have to be choosy in what its for and how often and I have felt a slight panic setting in because this time last year I ended up in bed all December. We believe its because about this time of year every weekend is booked with holiday festivities and things to do for them. It is so easy to have a full plate and before you know it you are running around with your head cut off. I think that's exactly what satan wants so that we don't have time for what really important, we lose where our focus should be (on God and not on Godly activities), and then we can't hear or feel God tug and pull and direct. It is so easy to do. Our society thrives on the hustle and bustle. Its almost looked upon culturally as unacceptable if you aren't running around with your head cut off.  I get frustrated that I can't do what I want to do, and what I want to do is not "inappropriate" or ungodly or crazy.....teach piano, help teach Bible Drill, help with Kids Praise, attend Sunday School, attend women's conferences, go grocery shopping on a weekly basis, get the laundry done on a weekly basis (currently going on 4 weeks of being behind on this), keep my house picked up and fairly clean, teach my kiddos and do more then just the basics and thrive in "survival" mode but really get to do more activities with them, practice and play the piano regularly, and the list goes on. However, I am thankful I have Lyme that has forced me to slow down (okay, at times come to a halt) and therefore, I have been more available. Available to take a phone call from a friend. More available to pray for friends and family on specific things and as God brings them to mind. More available for snuggling with my girls. More available to have tickle fests with my girls. More available to hear and feel from God. More available to interact with people I don't know and listen to their cares. Somehow Lyme has made me more bold, and though maybe weaker for a time physically, it has made me stronger as a person. And the list goes on. There are blessings in inconveniences!

Still Fighting

Its been so long. I have blogged a couple times but just haven't posted them. I'm sitting here at infusion and for the first time in quite a while I feel moved to blog. Just not sure where to start. My type A person wants to begin where I left off but so much has happened it is overwhelming thinking about trying to "catch up". I'm also at a weird place right now mentally. The last two weeks of infusions has really worn on me. I also didn't feel my blogging was accomplishing anything positive so I would blog for my own record, but I received an email from a fellow Lymie that really encouraged me and inspired me that maybe I should blog again, not for family and friends but for other Lymies because its affirming to talk or read that someone is struggling with the similar things. I gave up keeping friends and family "updated" especially after these last 6 months when things got so crazy. It became apparent to Chris and me that if people really "wanted" to know, they asked. I have never been one to shove my disease down people's throats but if you ask I am glad to share. Unfortunately, a lot of times people ask just to make conversation or appear social and then they get more then they bargained for. So, we have kept pretty much to ourselves about what is going on.  Unfortunately this can feel pretty lonely. But we have come to realize in the last year and a half with this disease and in fighting it that we have to surround ourselves with people that are going to support and love us whether they agree or understand.  I thought I was crazy at first thinking this, ignoring my body's response to "negative" or even challenging relationships or interactions. Then, recently I began reading a book called "The Road to Immunity" and the author, Dr. Bock, says, "To get my patients healthy (and to keep them that way), I recommend a combination of traditional medical practices (for example, medications or surgery when absolutely necessary), natural healing therapies (including a sound diet, vitamins, nutrients, herbs, homeopathy, and acupuncture among others), and emotional support (such as stress management and psychotherapy)." Part of my stress management is limiting putting myself in position where I know it will be stressful. Dr. Bock goes on to say, "We can start by shielding it from unnecessary strain or damage and by providing it with the nutrients it needs: fresh air, clean water, healthful food, and love (yes, love is a nutrient)." This affirmed that I am not totally crazy in how I approach interactions and what situations I put myself in.
Love is a funny thing. Everyone has a different definition of Love.  I choose to use Christ as my example. He loved the person, didn't always agree with what they did or the choices they made, but He loved them and cared for them, and He never gave up on them unless they blatantly denied God. The interesting thing is that every person Jesus came in contact with were fallible, imperfect, and He never gave up on them.  Unfortunately, one thing Chris and I have learned is that trials of life can shrink the circle of people you thought you could rely on to a remanent.  But we have to remember that Christ was perfect and people are fallible...so fallible.  I believe that one of the many things God wanted to bring to my attention through this disease was that what I relied on here on earth would let me down and when would I begin to rely solely on Him, trust only Him, and look to Him for what I needed.  I can't say I have fully accomplished this but I have gotten better. I will say that this disease and all we have been through with it has brought my immediate household closer.
This last March I began to feel a "switch", something positively different. I was on Zithromycin and Flagyl and many supplements. I felt I was a bit more functionable but at the same time other things starting going hay wire. I began losing weight, my hair was falling out by hand fulls, I was losing my hearing, and my vision in my right eye was getting progressively worse, to just name a few. I new these things weren't "normal" or good but I figured I was more functional so maybe it was all in my head just how bad it was.
In June, after having put up with "bucket head" symptom for a year and it had gotten so bad, I decided to see my ENT that I love and that has stood by me since 1999.  This is when I found out I was losing hearing. He was very concerned and felt it was the Zithromycin and wanted me in to see my lyme doctor ASAP. We researched Zithromycin and did read where it can cause ototoxicity.  We scheduled an appointment with the lyme doctor and had a battle plan of what antibiotics we would talk to her about switching to. We never got the chance. She saw the weight loss (at that time 117) and she flipped and pulled me completely off treatment and this is after she had always said she would never pull treatment in fear it would cause me to back slide. She sent me to a GI specialist. Tests were ran and they revealed that my esophagus was so inflamed she stated she didn't know how I was able to get water down. I was then at that point, taken off all oral meds.  Within weeks of being off all oral medications my lyme symptoms began coming back. I emailed the lyme doctor and pleaded with her, not knowing how long it would take for the esophagus to heal (resulting in a new diet of no meat or dairy...only soft foods...I've lost count what number of diet this is), to revisit starting treatment back up, only parentarily (IV).  She agreed and after being off of treatment for 3 weeks I started treatment back up in the infusion lab through IV, 3 times a week receiving Rocephin and also vitamin C for immune support since I couldn't take any of my supplements for immune support.  I did notice a different in getting off of all the supplements. I do believe in the beginning they were helpful but towards this point they had become more toxic to the system (I was taking 15-20 pills a day...thus the esophagus). The digestive system was trashed and probably not absorbing much if at all what I was taking. Some of the medications, like my migraine preventative, are supposed to be slowly decreased and I cold turkey quit. I saw no side effects....again, probably because I wasn't absorbing the full doses.
The first day back on treatment it only took the nurse 2 sticks. The veins have been through a lot in the last 20+ months. However, the second day of treatment she stuck me 4 times and couldn't get a single vein. They would just blow. At this point, frustrated because I'm wanting my treatment, the nurse contacts the doctors office and goes to bat for me on a PIC line.  In thinking through this, I have had a midline and a PIC (which did not go well at all). I had been down those roads.  Since we didn't know how much longer I would be fighting Lyme, nor how long it would take the esophagus to heal, I emailed the doctor and pleaded my case for a PORT. I was told she never agrees to them via email so I had planned to be in her office the very next morning first thing. To my surprise she agreed.
This was all the week before I was scheduled to fly out to see my grandmother. So, I was hoping it could be done the next day, Friday, have the weekend to heal, and possibly fly out. Nope! I had to see a surgeon for consultation before it could even be scheduled. This consultation took all day Friday with more tests and the procedure was scheduled for Monday...the Monday before the Wednesday I was to fly out.  The procedure, which is another whole blog in itself, went well, but being a surgical procedure where they implant a device in your chest that has a catheter that leads to the heart, has two incisions.  I had my first treatment with it that day, and also saw my GI who ordered an MRI of my bile duct in which they refused to use the PORT for the dye.
It is difficult to put into words what May through now has been like. The above is just a sampling. It was always something we had to fight through, or another doctor to see. The summer was spent traveling from one doctor to the next. Things kept changing weekly, sometimes more then that.  There's no way to capture it all on paper.
I rescheduled my flight because with the new PORT was more dependent on others and wasn't good for anything. A week made a big difference and with some assistance I was able to fly out to see my grandmother. I found it interesting that to get any kind of help at the airport I had to sit in a wheel chair.  But I complied,...when you are in discomfort and unable to do things, sometimes you don't have a choice.
After about 4 weeks of treatment through the PORT my cd-57 went up to 55, the highest it has ever been (180 is our goal).  I truely believe its because we are doing treatment through the PORT which goes straight to the heart and the vitamin C has also played a part. If you read up on vitamin C done intravaneously it is used for cancer patients to help with detoxing as well as other things (you won't find Lyme mentioned....some day you will). After the first 4 weeks, there was a week off of treatment and I went down hill. The little energy I had and functionality declined greatly. We went in and begged for another 4 weeks.
Two weeks ago we scheduled another appointment after being on treatment now for 8 weeks with the PORT to ask questions. I had this nagging feeling (aka God) that if we needed to do treatment five days a week for a month and then take two weeks off . The two weeks off was my idea just to appease the doctor who keeps threatening to take me off treatment to give the digestive system a break. Um, hello, why would I want to take a "break" when numbers are finally going in the right direction? Remember the last time she took me off treatment? My lyme symptoms came back and they continue to worsen with each day. So, we went in to do battle again. I also had questions and other "suggestions". I was so afraid I wouldn't remember them and think clearly and I was afraid to present my ideas because I didn't think she would go for them. I so dislike that I, the sick one, have to be the one on my toes and know what to ask or it feels nothing happens.  The doctor came in and God took over. I had this clear mind accompanied by boldness and I remember my questions (Chris couldn't keep up with them on his phone) and just went "bam" "bam". When I mentioned doing treatment five days a week she shook her head no. I asked why we don't test the lyme test through iGenex, the most sensitive lab (I knew the answer but wanted to put it out there) and she said because insurance doesn't cover it but said she would run it this time through iGenex. I had also pointed out that we had always been doing at least two antibiotics and should we be doing two now. Her answer was no. Chris began to ask if we are doing everything possible and I mentioned that I was even willing to try Vancomycin, a medication I reacted to when I was in labor/delivery with Maddie (?) and have been labeled as allergic to, but its the best antibiotic in fighting Lyme.  I, being a good lawyer, pleaded my case that I'm under supervision in the infusion lab and if anything happened I was in good hands. She agreed! Ha! So, we leave to go do an infusion using the Vancomycin. I sent word out to my prayer warriors to pray that I would tolerate it. We get to the infusion lab and come to find out she not only put Vancomycin with vitamin C, but left on the Rocephin and prescribed it five days a week. Unbelievable! Everything I asked/addressed she did.
I got through 3/4 the bag of vancomycin and began to itch like crazy. I was so happy that I got through that much. I was given benedryl through my PORT (nasty!!!) and had to stop the infusion. Within about 10 minutes I was in the public bathroom sick to my stomach and doubled over for over an hour before I could get up and walk out. Afraid it was the vancomycin I didn't tell anyone and prayed the whole time that no one would walk in and find me doubled over on the floor. I knew they would call 911 and my vancomycin would be taken away. I prayed and prayed and got through it.
So, for the last two weeks I have come every day to do my infusion which takes about 4 hours. The last two weeks the girls would come with me and we would do school here at infusion most days or I would come in the afternoon with Becka and she would finish school here. Last Friday, I fell apart. I think the two weeks of dragging everything and everyone to infusion and sitting here for 4 hours trying to do school wore on me. After my infusions I am zapped!!
Yesterday, I came by myself (first time) while Chris stayed at home and did school with the girls to try to relieve the stress and when I woke up toward the end of infusion my IV was dripping super fast and I was itching. I was given benedryl again through my PORT and again I ended up sick to my stomach and doubled over for an hour. It was as bad as the first time but still pretty bad. The other option is a drug called Decatron which is steroidal which is not good for Lyme.
After 8 weeks of doing treatment through the PORT my cd-57 is up to 142. We are still waiting to hear from iGenex. So much will be determined off of that test. If there are NO bands present on the iGenex test, this will probably be my last month of antibiotics. If there are bands present then we will probably continue treatment. The only concern I have is that my cd-57 is up and if the iGenex comes back completely negative and we still have all the lyme symptoms. I have felt that I have slowly degressed back to where I was before we started treatment.
My computer is dying so I need to stop. I hope for my fellow Lymies this is helpful in some proportion. I have learned so much just in talking with other Lyme patients here in the infusion lab. I now know more people with Lyme then I do with cancer. It blows me away.

God is Gracious

Life with God is such a crazy ride. I am continually blown away by what He does and then I am shocked that I am amazed. I knew in my heart He could do it but to witness it, and to be allowed to be involved is something different. Anyway, He still amazes me.

I think the last time I posted I mentioned a switch I had felt, a change. Somewhere around my birthday in May, I had a week of headaches/migraines and the after that I no longer felt the switch or change. The old mono feeling was back and this really bummed me out. Sometimes I think I'm allergic to end of semesters or vacation times (summer, spring break, Christmas break). I fight the "it doesn't seem fair" attitude because I so look forward to these breaks to spend with my girls and the last thing I want is to spend them in bed like I did in December. Can you tell December left a bad taste in my mouth? Out of this entire journey it has been the worst month for me mentally, spiritually and physically. 

What I began to notice with the headaches was that they weren't responding to meds so I felt they had to be more due to toxicity. About this time I had begun to get an appetite back from months of having a strong aversion to food so I was eating what ever sounded good just to get food in my body. But the wrong food increases toxicity. So, I began to focus more on right foods to decrease the toxicity and the headaches slowly decreased. The other thing I think that is knocking me down is the heat. My girls are on a swim team and we have practice 4 days a week and even though I would sit in the shade I think the heat was just zapping me, especially at the first swim meet.  Any amount in the sun just zaps me completely. I have also been "running around" a little more then usual, trying not to be sedentary because of the heart and because I want to be doing things but it also zaps me and when I get going I get run down. There has got to be a happy medium somewhere but I haven't found it.  Then when you put in the mix my bucket head symptom, I go nuts.

This last week Chris was out of town at youth camp. For the first time in 18 month of treatment he didn't arrange "babysitters" for me. I am always nervous when he goes out of town. Its a sense of not being able to handle everything on so many levels.  I began praying about it a couple weeks before he left. I don't like asking for help. If someone offers I will gladly take it but I'm so tired of asking for help. I want to much to be a functioning mommy/wife. I see so much of things that need to be done and that I want to do around the house but just don't have the strength and stamina to do them and it drives me crazy lately.   I'm better off really sick in bed because then I don't care but when I'm this middle stuff where I'm well enough to be up but not well enough to fully function its like a tease. 

A couple days before Chris left a friend of mine offered to take the girls to swim practice this week for me so I wouldn't have to sit out in the heat. At first I did not like the idea because I love being there with my girls, for my girls, watching them. I want to be there for them as much as possible knowing there will be days I won't feel well (like the week of headaches/migraines) and can't be there. But the more I thought about it the more I knew it was the smart thing to do. I also struggle with allowing someone else to go out of there way to help me...was it guilt? I don't know...it was uncomfortable is all I know. But the more I thought about it the more I knew it was the best thing to do. With Chris gone, I needed to reserve energy, and with him gone I would have no relief or break or reprieve. So, reluctantly, I said yes and I hated staying home and missing their swim practice and not getting to watch them swim but knew it was best for my health and knew it would give me more strength for their swim meet later in the week.  

God also provided another friend to take the girls to the library one day. Again, I felt guilty but allowed the blessing and tried to store the energy and but all the while I sat at home doing tail spins. I like my chickens at home with me. I'm not much use at home alone either. I think too much and I can't dive in to any of the projects that have been yelling my name for over 18 months. That would defeat that whole, "save your energy" idea.  God also provided another person to bring us a meal Friday so all I had to do was heat it up after getting home late with the girls after Becka's gymnastics. As the end of the week came I was so thankful for what God allowed for me. He allowed me to feel well enough this week that I wasn't in bed, I wasn't herxing this week. He allowed me to enjoy my girls. We made cookies together for them share at the swim meet (its been so long since we made cookies together). They helped me a lot. We got into a rhythm where Maddie emptied the silverware of the dishwasher and I did the rest while Becka washed dishes (that kid loves to wash dishes...she hates to put anything in the dishwasher). I didn't do great this week as there was one day I forgot to eat because I was so busy (the day we made cookies and I had to pack dinners for the swim meet) and I forgot two days of my shot, but God allowed me to be more functional this week while Chris was gone then I have been in a long time. I felt crummy but functional. I can handle crummy most of the time if I can just function. I get a little crabby by the end of the day, but I can handle crummy if I can function. 

Before Chris left he had a female leader back out and I was trying so hard to figure out how I could go to camp. Even a couple weeks before that I was trying to figure out how I could go. I can drive a van. I can lead a bible study.....but thats about it. The kids need more then that. It stinks! I want to be more then that. This time last year we said I would go this summer and here we are and I'm not going and we are saying, "next year". Ugh. Chris and I laughed because I can barely get ready for church without getting bucket head and if allowed to persist without lying down it gets painful in the ears. It is so frustrating to look normal and not be.

I look back at this week and see God's hand and how he sustained me but its like it ended at midnight last night because I get up this morning to get the girls and I ready for church and I'm falling apart left and right. I step on the scale to find I've lost two more pounds. I'm 6 pounds less then the last time the doctor saw me and she said she didn't want me losing any more. I step in the shower and I'm scare out of my whazoo at a brown clump on the floor. Its a wad big wad of hair. I had noticed in the last week or so that my hair was falling out again. It seemed like I was filling a brush each morning. This morning in the shower I had locks of hair just coming out. Now I know why the wad of hair in the shower. This didn't help. In the middle of the shower I just emotionally just bend over and fall apart as if I had been pretending all week, or holding my breath all week and now reality was hitting or someone hit me on my back and a big gust of air came in only I couldn't breathe. What was going on? Where was God's sustenance this morning? I would think of all mornings, He would provide this morning so I could get to church and worship? Yet, I know I'm under attack. I'm emotionally a wreck. But as long as I am physically feeling well enough, I am going to church. I may ball off and on and be an emotional mess, but I am going to church. People at church already know I'm weird. But today has just been one of those days where everything has culminated together where I just feel isolated. Chris is in his own world, off saving the world, as I put it. and I want so much to be a part of it, to serve with him and I'm not. Its not where God has me and I'm really struggling with that right now. I feel stuck in my four walls. Again, at church I have well meaning people say, "you look great" and especially after a morning like this morning its all I can do to not just scream!  I guess I should be thankful I look great (thats God shining through me because I'm happy to be in His house and to be around people not because I am whole and healthy) but its difficult to be thankful for something you don't believe. 

I guess there is this raging unsettledness. I wouldn't trade Lyme in for the world. Its ugly, its been mean (that's putting nicely), it has stolen from me,....in all better terms, it wasn't my plan. But through it I have a closer relationship with God, I have grown as a person, I see some things clearer and don't want to go back to some things before treatment days, and my family has grown together in so many ways. Yes, we have struggled too, but I think we have grown more and I'll take that.  I want to be content where God has me, I really do. But the human side still itches and yearns for her plan and right now just itches to get out there and be involved.  I simply want to function as a wife, mom and  woman of my church and don't feel that is too much to ask of God. I have a heart for girls ministry and to serve with my husband. I have a desire to go beyond pew warmer on Sunday mornings. But I also know my God knows me better then I know me and I know He has a plan and He is still training me to follow His plan and not my own.   I feel like a race horse in the stall waiting for the door to fly open so I can run the race with God as my jockey. I'm antsy. I'm anxious. I know there is a race. The race of my life. I know who is in control. But dad gommit...when will they open the gate and let me go! Yup! That's about the best way I can sum it up. 

Who Is That Woman?

So today we had pictures taken for a pictoral directory for our church. Wouldn't you know it I have been down since Saturday afternoon with what is probably a herx. Started not feeling well Friday but it really kicked into gear Saturday and I just kept pushing it not wanting to go down. Yesterday had an appointment with the cardiologist and so I pushed it again yesterday when I really should have been down. Its the headaches and nausea which is usually part of a herx and I'm hoping its a herx and not a December repeat. I'm a bit nervous about that. We backed off of the Topamax that helps prevent the headaches in hopes of gaining some weight but if this winds up not being a herx a dive downward then we will have to go back up on the Topamax and I'm afraid the appetite I just so recently gained back will go away. Its such a vicious cycle and feels like such a delicate balance.
So, we have these pictures scheduled for today. One thing we have learned with Lyme, especially in the last 16 months of treatment is not to schedule things because we don't know from day to day how I will feel.  But some things can't be avoided altogether.  Today was a killer and I took migraine med on top of migraine med trying to make it, trying to fight and push my way through.  If there is something I have also learned to do thanks to Lyme, its fight and push through....sometimes to my detriment though. I was laying in bed this morning thinking, "all you have to do is show up, take a few shots and then come back to bed,"...and then I realized "shots" = flashes...migraines worst enemy. I did what I do best and fought my way through it. But I wasn't prepared for what I saw....or who I saw.
I dressed our family up in the outfits we wore for a special occasion this last December (I felt crummy then too, but I think I looked ten times better) when we took Madilyn to the nutcracker for her birthday. I don't have much that fits anymore and I barely got by wearing this today. I would have rather put the family in something springy and colorful but I don't have anything that fits....literally. Some would say they would love to have this problem (I've heard it already) but I beg to differ. Though I've been tempted to try on the wedding dress to see if I'm that small or smaller, and have enjoyed seeing the waist line shrink, its not a nice shrink and when you go from clothes fitting to nothing in the closet, not even underwear (sorry for the personal) fitting it becomes a challenge, and it happened under 6 months. Now, as much as I would like to keep most of it off, I don't know what will happen so I'm not about to go out and by a whole new closet complete with the essentials of clothes, only for Lyme to throw me another loop and I blow up the other direction.
So I had us dressed in clothes that had a special meaning, so I thought, though they were wintery, though dressy, but I didn't feel well at all. Lesson #1: Don't have pictures taken when you have a splitting headache and have taken a ton of migraine medication just to help you function enough to get to the photo shoot.
The other thing, besides clothes and headaches I was battling with was my hair. Since December my hair has taken on a new attitude of its own. It literally looks to me as if someone took a frying pan and fried my hair. To add to matters I have had some kind of reaction to something since March and have fought what appears to be acne all over my head which has moved down my neck and on to my back but it itches and the more I itch the oilier my scalp gets. So I have oily fried hair that no matter how hard I try to straighten it bunches up and since it falls out its thin on the ends.  Its just a wreck. Its not my hair.
I tried to not let any of this discourage me going into this appointment today. People, including my husband, said how beautiful I looked but I didn't feel "beautiful" one iota but I tried to let their compliments sink in and replace what I felt.
It wasn't until we looked at the proofs that I really was shocked. I was staring at a woman I really didn't recognize at all. I didn't like what I saw. I didn't think she fit with the man or the two girls. She didn't look like Chris' wife and she sure didn't look like those girls mother. It was an awful feeling. I just didn't recognize her at all. Normally, you find one pose or picture you like but this woman just didn't belong at all.
I really wanted to buy a tri picture with the husband and wife in the middle and a picture of each daughter on each side. We went through the process of picking through the pictures. There was a gorgeous picture of my husband and one of each of my beautiful girls that showed their personalities. But I couldn't get past any picture with the woman. I got thinking about the tri picture and thought, "every time I look at that picture I'm going to remember this day and this time in our lives" and I'm not sure I want to memorialize it with that much money and in this way.  The man pushed for the sale and when I explained he said I should look at it from a different way that when I look at the picture I should think of all that God has brought me through.  I have thought of that all afternoon and have wondered if I am too negative again. But I explained to him in response that I would rather spend that kind of money on a photo shoot after I am well, one that I can enjoy and have fun with family as a celebratory photo shoot and hang that on the wall to show what God has done then to have today hanging on my wall.  I don't want that strange woman in my house, on my wall, standing with my husband and my children....though I know she is day to day....I know some day she will be kicked out and the real Elizabeth will step forward and will regain her role as wife and mom in this house.  
We did get a free 8X10 of the family and that will be all we need to remember this time in our lives. To look at it will be haunting enough. I look forward to the day I can replace or accompany it with the "VICTORY" picture.
For those that don't know, which is most if you don't talk to us on a daily basis, I walked out of our last Lyme appointment more encouraged then I ever have. For the first time I have a peace about "if" I will go into remission where up until now I questioned it....it felt out of grasp.  The question now is "when" and I try not to hang on that for only God knows when. In talking to the Lyme doctor she emphasized the length of treatment which basically told me to hang in there, hold on. She also made the comment that she felt Lyme was more difficult to treat then Cancer and HIV.  For the first time I felt affirmed in my frustrations.  She did point out that our last two Lyme tests both had positive bands but that the bands were different on both tests showing that different antibodies were being exposed. This was encouraging. She ran the usual tests...sort of. The Lyme test this month came back with no bands on top and one band on bottom, and for some reason the CD-57 test was not run. I think this was an oversight on someones part and for some reason I was okay with it. She did test ATP and it was 48 which is the highest it has been. It was last in the 20's. I took this as encouragement and progress. We don't see her again until mid July and tests will be done again then. Though progress is not leaps and bounds, its still progress and as long as we are making some type of progress I am encouraged.  The body is tired and weak and the mind is weary but the spirit is strong and I will continue to fight.  I've got to so I can kick that woman out of the picture and regain my position, my role in my family :-)