It's Amazing What A Day Can Hold

Yesterday I was still feeling bad. J was out of town and so it was supposed to be quite.Our neighbor called on Sunday and needed a ride home from work. She got off about 20 minutes after M gets out of school. On our way home from getting her, we were in our sub-division and on the corner were 4-5 teenaged boys standing over a boy laying in the rocks off of the sidewalk. Now this was the 2nd time since we've lived in Las Vegas that I've seen someone in trouble lying on the sidewalk. All I wanted to do was get home and plop down. But I pulled over. I asked what happened and the boy was unconscious. I asked his friends if he took anything, tried to shake him. No one called 911 yet because they said they didn't have phones. WHATEVER! None the less the boy needed help. I called and only 1 boy stayed, the rest disappeared. I followed the instructions that the emergency guy was giving me. The ambulance was on they way. Everyone gave vague details to what this name was what happened. It was decided that he had a seizure. He started to come to and a different boy showed up, he said he knew where he lived and would go get his mom. As soon as his mom was there (freaking out, I would be too), the other kid that was giving me limited info was gone. Nice friends, just taking off. The kid that went to get his mom blurtted out, "He smoked spice today!". Wow, what is that. The ER guy explained to us what it was. So that was some excitement that I didn't want. M and I hung out and rested.

I spoke with my attorney today and she gave me some hope about my meeting tomorrow. But she said that they rarely ask for a representative payee. Nice, that makes me feel good. She also said that it may be because something in one of my doctor's notes. She didn't seem to really know what the letter meant though, so I guess the Federal Government likes to keep things a secret. She said we'll just keep our fingers crossed. Aaaahhhhh!

The Way it Is

The past 4-5 days have been pretty bad. Saturday and Sunday I didn't even get out of bed. At one point I was laying there and had to put a little bit of cotton in my left ear as to protect it from even the slightest it of air/noise. I'm down almost 5 lbs., I don't really eat that much, just enough to take my pills. It's hard not to be able to participate in...LIFE! As I drive M to school,  I watch parents as they walk their kids to school. I can't even remember how it feels to just get up and do whatever, whenever. It's always a plan, a hassle to get things done. I'm so stuck on the fact that going to sleep each night knowing when I wake up I'll be in pain.

I called Dr. S.D. (Neuro) office again and let her know that I called a couple of weeks ago and never heard back. She said I could come in at 11:45am, but I told her that I just took some pain medication and didn't want to drive across town. She said that she would talk to the Nurse Practitioner  and call me back. They just called and said that I should go back up to the 800mg since I'm having so much pain. This is very disappointing, because I tried to get off of some of the medication. :(

I made a call to a Neuro Institute in Colorado. They have about 50 docs. She is going to find out who is the best to see and call me back. I explained that I have seen many docs here and they all want me to go somewhere else. I have a TN Support Group meeting this weekend. I was really hoping that I would have something good to report back, but I have nothing at all.

I Just Want To Be Normal

I feel like crap! How else can I say?

Even though it's only Wednesday, it feels like a long week. On Monday I called the lady from the Medical Examiners office. She was nice and said that the Chief looked over my 5 page complaint letter and assigned it to her because they think it was serious enough. Well good, it's like I am checking that off of my list. She said I should find out something by February.

Yesterday was tough too. I had appointment with my Health Coach and he can hear the 'giving up' in my voice. He said if I'm not getting anywhere with UCLA's Neurology Department then I should look at my other options. He said it wouldn't be a bad idea to look into going back to Colorado for their Neurology Centers. So that will be my goal with him. I also got a letter from Social Security, and they want me and a representative payee to go in on Nov 30th. Hopefully it's good news.

On Sunday I was supposed to have a call-in with the TNA Young Patients. Yeah well, I forgot. J was outside and it's not that I was doing anything but laying in bed. I can't believe it. I listened to the recording they had. Something someone said was so true. No one can tell, because it is an invisible disease.  No one can tell what I feel like because I don't have a wheel chair or a bandage. It's hard to explain.

Everyone is in this high speed mode for Thanksgiving and Christmas. I'm just trying to BE. As long as the kids get what they want, that's all that matters to me. We plan to have a great dinner tomorrow and I will be thankful for that.

My Brother Said That Kids Are Like A Petrie Dish

Another cold, and no I didn't see this one coming. I've been helping with M's class every Thursday afternoon. Actually it's only been like 3 times since they seem to have so many days off. But they do cough all over the place and spread their germs.

Friday, after I finally got up and going around 1pm. I thought since the new Twilight movie came out we could go see it that afternoon. As I waiting in my car for M to get out, I decided I felt ok, and called J to ask about going to the movies. I got M and we headed over to the casino with the movie theatre in it. J met us there and it started off  loud, I was nervous. But there wasn't any vibration so I was ok. We had a great little family date.

Saturday was another day that I woke up around noon. J is going on a business trip and needed a sports jacket. So we left the house around 3-4pm. Found one and then came home. I haven't been sleeping well. I could blame that on a million things but who knows. Sunday came and I woke up in so much pain. It seemed like my sinuses had so much pressure and the ice pick stabbing in my ear was terrible. J went to the pharmacy and got some Advil Cold & Sinus. I didn't even look at the package and took 2. It didn't seem to help. I laid in the same spot while J put the lights up outside. I was hot and cold with a fever. I know the lack of energy is from decreasing my Tegretol but having a cold on top of it sucks. I took more Advil before I went to bed and after reading the package it said to only take 1, GREAT!! I mentioned to J that my eye is getting so much worse. So I'll have to call and make and appointment with the eye doc.

Today, I was debating if I was going to call my family doc to see if I had another sinus infection. But I decided not to. We'll see if that ends up to be a good or bad idea.

1 Step Forward, 8 Steps Behind

    Waiting sucks!

    I got a call back from UCLA Neurology Department. Now they do things different from the surgery dept. They have to process the referral and then have some doctor look over it and decide which type of doctor to see. So they said to schedule with a 'Headache Specialist'. AAaaarrggghhhh! Are you kidding me? I asked why they felt that and he said that my new doctor only sent over visit notes from 1 time. I felt like I was going to just scream. The guy was nice and I told him if I sent all of my records would they re look at them. He said yes and to call him mid next week. So I called the Neurosurgeons office and they are in the same building as the other office and would send my packet over there. I am seriously getting no where! It's not UCLA's fault but it's the new doctor's fault.

    Yesterday I got a letter from the Nevada State Board of Medical Examiners office. They are looking into my complaint about Dr. T and they will look at bringing her up to the committee or her licence? I don't know. But it's nice to know if you write a letter it doesn't just go into the trash. I have to call this lady and go from there.

    Thursday was time for another step down on Tegretol. So I'm now at 400mg. I'm tired, I feel irritated, the pain comes and goes. Yesterday I felt like saying, "This is me giving up". But I don't know where to look for answers or help. On the 20th the TNA Association for Young Patients (Under 40) have a meeting. How to function with the disease, stuff like that. It's getting harder for me to see out of my left eye and so I guess I need to go see the eye doc. I came back home after dropping M off for school and back to bed. My ear hurt and I had some mild burning in my face. Mild Burning..LOL! I say it like nothing...mild burning.

Sometimes You Just Have To Laugh

     Today I was out and I saw this lady wearing a black bra and had her coat open. I thought hummm...I must be over dressed.

     My neighbor had a "Slumber Party' on Saturday night. I had a good day and was still lightly trying to take the new pain medication so I decided to go. It was so much fun and everyone was so nice. But I paid for it on Sunday. I awoke in pain. Pain everywhere, as if I had just ran in a marathon. I stayed in bed until around 4pm. I can't remember if I took 2 pain pills or just one. No matter, it didn't seem to help. before I went to bed I thought I would even try a shower, that didn't help either. I  think it was worth it though. I got out (next door) and laughed.

    Two weeks ago my neighbor had also asked me for a ride today. So when I went to take M to school she came with and we headed to drop off a paper for her. This turned into an all day event. She felt bad but it wasn't her fault. We talked and again I wouldn't wanted to be in anyone else's shoes but my own. I felt ok and didn't talk and of the pain medication. I guess the 1st day was ok but I will have to go back to the Hydrocodone, it was the only one that made a big difference, maybe in just a higher dose. Again, I'm sure I'll be sore tomorrow, but it was helping someone out. When I got to M's school my eye started to cloud up and is just fuzzy to see out of. I'm glad I'm home and I can rest. I don't have any doctor appointments since this was the week I was supposed to go to UCLA. I called there today to make the actual appointment and the guy I spoke with said to call back tomorrow, his supervisor had to look it over. I did discuss with my M-I-L the possibility of maybe going to see a specialist in Colorado instead of California, but J and I are still discussing that.

    I seem to be losing weigh, yeah!! Not alot but a couple of pounds makes a huge difference in my world. That's all for now.

A New Medication

    Two days I noticed oil on the driveway where J parks his car. I mentioned it to him and he went to his OCD mode.LOL! He went out there in the dark and that was all he could think about for the rest of the night. So yesterday after my doctor's appointment he wanted me to take it to get the oil changed.
  
    Since M was off of school, she had to go with me to the Pain Doctor. It was a slow morning getting ready. We got there and Dr. P.B. came in and asked how the Lortab was working. I told him that I couldn't take it because it made me sick. He gave me Oxycodone. He wanted to make sure if I said anything to anyone that they knew that it was not Oxycontin. It is basically Lortab without the Tylenol he said. So I can only go off of what he tells me.

    We headed over to the car place. They were very nice and basically the East Coast Salt was hard on the undercarriage. But after M and I waiting there for a couple of hours while they Changed the Oil, Flushed the Brake Fluid and Transmission Fluid. It seemed like it took forever though, but it was done.

    We went to the pharmacy and they said it would only take 45 minutes if I waited. I did not want to go out today so I decided I might as well wait. So 45 minutes turned into 1 hour and 45 minutes. By this time I was so tired and just wanted to get home, it felt like a really long day. And thankfully M thought it was just a fun 'Girls Day'. I guess her standards aren't very high.

    Once we got home we ate and I took one of the new pills. After about 15 minutes I seemed to feel better. The majority of the pain disappeared. Unfortunately for J, I wanted to stay up late and watch TV and look at things on the Internet. The downside is that I can see how people can get addicted to stuff like this. I didn't have the out of it feeling like one would think, but I was able to feel things other than the pain.

    I woke up this morning in pain. After talking with J he said to see if I took another one would help. I wasn't planning to go anywhere. I got up and made M and I Cream of Wheat. Wiped down the entire kitchen. Went through all of these papers on the counter that were building up.  Washed all of the bedding. Really?!? I'm not saying all of the pain was entirely gone, but I was able to do...I feel lost. I take so many pills and one little one that is smaller than a baby aspirin allowed me to get things done.

    Now I have to tell that I am not in bed every single day. I do get up and get M to and from school. I get errands done, but I have pain. My mind and body are an everyday, every moment reminder of the pain. I go back and read posts from April or May and an amazed that I forgot those days. This month it has been 1 year since the symptoms started. I told J last night that if I had this little of pain I could have a job. But the only problem is that now I wouldn't pass a drug test. I don't know.

Waiting......and waiting

    I'm almost at the end of the first week after reducing the dose of Tegretol by 200mg's. It hurts and it feels bad. Yesterday I was so hot, like sick hot. I laid around and then the pain started. In my face it was burning and my teeth as if a couple were yanked out. The stabbing in my ear. Once J got home I fell asleep on the couch and either he woke me up. I remember asking about 'the words'. Thinking M was practicing her spelling words. How hard it is when your mind does this. J was sitting on the edge of the couch saying that maybe I should wait until UCLA before trying to come off of it. I woke up this morning and barely got out of bed. Knowing that I need to get M to school is my only push. When I got back home I came right to bed. I slept there until noon. Apparently our furnace (this is the first time we've used it) never came on last night. So I knew I would need to get up for the repair man. I got up and ready about 1:30. I guess it was just a fuse that blew, so now it works. I have the same taste of metal back in my mouth. The same taste that came before all of the pain. Only this time I have pain in my arm and leg. J and I talked about all of the different scenarios about this Tegretol issue. I don't even remember what we decided. Try to stay positive and be happy? How do you do that?

All Mixed Up Now

    It's 50 degrees out today and I am sooo hot. Since last week when I went to see Dr. S.D. we discussed or rather requested I be taken off of another medication. He said Tegretol XR. Since I'm at 800mg a day I can go to 600mg of 2 weeks, then go to 200mg again after that. My weekend was so mixed up. On Saturday I woke up at noon, and then that night I forgot to take my medication before bed so I felt as if I slept only a couple of hours. And then again with the dreams about death and someone else's suicide. I looked it up again in my Dictionary of Dreams, it all says the same. Death, Murder and Suicide in dreams are the loss of control or the loss of a situation. That would make since. The doctor informed us that even though I was not taking Tegretol for seizures, coming off of it can cause seizures. WHAT?!?! I tell ya, I don't know what is worse.

    With this new pain, I just ache in my limbs. I hate it! UCLA called this morning about my new referral. I have to call on Thursday to get make the appointment with the different doctor. I called and cancelled the other appointment and hotel reservations. On Friday I let our neighbor girl know that I didn't need her on those dates to watch the kitty. What a hassle, Blaahhh!

    I have my appt with my Pain Specialists this week. I'm going to ask him for a different medication, other than the Lortab. That is very hard on my stomach, but I want something also to help get me through the withdrawal if there is any.

 

My Life As A Blender

     I'll add some Dr. S.D., some Dr. P.B., a little of Dr. A.B., and some Dr. G.R., a pinch of Dr. R.W. turn it on high and you've got NOTHING but a huge mess. Especially when you top it off with the pharmacy.

    I went on Wednesday to see Dr. B. I sat down and started explaining how complicated everything was. After a long silence, he flipped through my chart and repeated everything back to me. Yup! That's what I just said, at least he was listening. Then kinda gave me that look like 'Sorrrrryyyy'. So that was what I expected. He said that we would check up at the end of November.

    The next morning after I dropped M off to school, I went to go and get J from work. Thankfully, he was going with me to see Dr. S.D.. I had the most horrible dream the night before. Two separate scenarios, but both end in death. I actually died in my dreams! How are you supposed to feel after that? We got there and I felt as if I was even more scared. He told us the neck MRI was fine (he saw the same narrowing in my c-spine), the head MRI had the DVA I looked up, but since it was on the other side, he said it was something I was probably born with. I explained all of my new symptoms and he said he thinks its Complex Regional Pain Syndrome. This might just be pain that I have for the rest of my life. Like telling someone, 'your eyes are going to get red where you are tired'. He asked when the UCLA appointment was and I told him. *Side Note: When I called UCLA they told me this was the person I had to make an appointment with. He said, "You need to be seeing a Neurologist!" Uuummm, I thought he told me Neurosurgeon. Well Great! Now travel plans, J's vacation dates, and my appointment needs to be with another doctor. I will take partial blame, but only now is he sending down an EXTENSIVE LIST for a referral to their Neurology Department. It's sets me back again, but I'm not shocked. Also we thought it was weird when the nurse wanted to review what medications I was on and listed only 3. When I go into a new doctor I bring a printed list to give them. Today I got a call from their office wanting to re-list everything that I told them on my 1st visit and yesterday. Maybe no one sees their doctor enough to find all of the mistakes that they make in health care. Next week I will need to start again with everything that I thought I had already taken care of.

    I got a call yesterday from the pharmacy that I had an RX to pick up. So I went in this morning to get it. I walk up to the counter and 'Helga", as I call her, recognizes me. I am not even kidding you, the lady reaches down and pull out a stretched handful of plastic prescription bags. She said that they were all mine and she needed to find that one. Then she picks them back up and goes to a back counter. The Pharmacist said are those all of one person? She confirms and he said "Are you kidding me?" After she finds the refill for Vitamin D, she rings me up and I leave. Then I thought, I bet when I went to pick up my medication last month and asked for them to be put on automatic refill, they refilled every prescription I had refills for in their system.

    Maybe I'm just like that 1%. The one percent that things go wrong.

Falling To Pieces

    I am really struggling right now. Today the pain was on my complete left side. From the top of my head to my foot. So much pain, it's scary.I took a pain pill and that helped a little bit. How do people live with chronic pain? Before all of this there would be no way to understand how someone could go on. The shooting nerve pain, as if my limbs are going to disconnect from my body. The pain is surreal, I hate it, I hate it so much! It was so windy out today, that didn't help while picking M up from school.

    I got the Halloween decorations taken down and mopped the downstairs. I thought I was being productive but then the pain starts. It's so frustrating. I have an appointment with Dr. B tomorrow. I guess I'm going to just go and plan to let it all out. Take extra tissue and let him know that emotionally I am struggling. I don't even know what he'll say. At this point anything would help.