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.