If I could even remember...

    That's my new thing, I guess it's my old thing. I can't even remember. I have family in and the pain is at a 7-8 level. Which is I can deal with. We got to bed late last night with my body has a hard time to deal with a new schedule. Over dinner my in-laws convinced me that UCC was worth going a try. So that's what the plan with be in a could of weeks.

Making the Best of Today

    Another hot day in the desert. There was plenty on the TO DO list for today. Actually not much other than grocery shopping but it was sooooo hot, not ideal grocery weather (108 degrees). I could tell that something wasn't right. I have started in the last day or so having skeletal pain. The best way to describe it was as if someone dropped something on my foot, and I bruised my calf. It's weird. We went along to get things done and my shoulder started to swell up. Now it hasn't done this for awhile. I mentioned it to J and then it came to me that I haven't had swelling in my collarbone sine I started taking the 1st cholesterol medication back in DE. I don't know what to do, but by the end of the night I was having more skeletal pain all over. I guess I will have to call the doctor tomorrow, but what doctor do I call? I have to say that having both of the girls home made my day. Looking for the little things.

There Are Questions Everywhere

    It's been another disappointing doctor's appointment this week. I went and was worried about my cholesterol / triglyceride levels. Apparently I was the only one in the building with this concern. I had all of my question written down as usual. Dr R. was so non-chalant about the lab levels and his previous mis-diagnosis. He made a change in the cholesterol medication and added flax seed oil. I ask him about what all of these medications are doing to my system. He said that there was no way to compute the one-on-one relationship each of the medications has with one another. Basically he doesn't know, and as I took it by him standing up walking towards the door, doesn't really care.
    I know that I should start looking for a new doctor. Something that I am very tired of doing. Really I'm tired of doing alot of things. I'm happy for the distraction with B in town. I hurt but in the past couple of days I think the Neurotin is building in my system. Is it my system going to stand up towards this? And for how long?
   I haven't blogged for a couple of days, but cannot as I sit here tell you what exactly happened the last couple of days. So I guess this is going to be short.

One Day I Will Come Out On The Other Side

    What do you say? How do you explain this to others? I don't want sympathy, I just want to explain to other's why there are days that I don't know how to handle the pain. I don't know how to handle any more bad health news. I want to stay in my quiet comfortable bedroom.
    I've added Neurotin to the Tegretol as of this week. I know that I am not supposed to expect overnight results (something that has become my mantra). But I do not want other things to pop up.
    On Friday morning I was awake early after a tough night. I wanted to pick up my results from the lab. I wanted to see for myself that I was not improving. I had the results in my hand and I was trembling. I wanted to rush home and check the past results. In February my triglycerides were 176, then in May 238, and now 312! 312! How is this, I have been taking the cholesterol medication. I was so upset. I called my grandma and cried to her. I knew it all of the medication that I take works against other things in my body.
    On Tuesday, when I go to see Dr. R (general) I am taking control of my health. No more of this adding multiple medications. I know that I cannot and will not just stop taking all of the medication. Although some of it is poison, others I cannot live without. I have a list and even though this is only my second appointment with Dr. R, he will hear me. The last time I listened and went to physical therapy..we all know where that went. I want him to hear how I feel, what questions I have, what I expect.
    I got a letter from the Social Security office here. After my lawyer submitted my appeal. I wish they knew my everyday. Can I sit 8 hours for a job? No. Can I file? If you didn't care what order things were put, otherwise no. Can I be reliable? No. I feel that by applying I'm just asking for something that I paid into. It's so sad that the crack heads and crooks have made it so hard for truly sick individuals to receive benefits.

It's no joke

    Remembering the joke: You're so ugly my face hurts. Well it's not a joke to me. My face really hurts. My mood is down and I feel like crap. I talked to Dr. M today and he said that a treatment plan would go week to week for me. Like Monday and Friday, week to week, maybe for 3 weeks. He thinks I could really benefit from it. I have a great new support team from other TN patients around the world.
    Today I got up and was hurting so bad. This little cough that I started yesterday, lower back pain. My eye hurts and face hurts. I made it to the pharmacy to pick up my 8 prescriptions. AAARRRGGHHH! Why do I feel so bad?!? I take all of these pills and for what. I mean I want to pull my hair out, without touching my face. The nurse from Dr. R. (general) called and said that they got my lab tests back and my triglyceride's were over 300. I have to go and look what the results were the last time. I told her that I already have an appointment on Tuesday. She seemed worried, but I am done today.

Getting Desperate

    With being in so much pain this weekend I was getting desperate. The Neurotin on top of the Tegertol wasn't completely working. I decided to call the guy who does the Nucca treatments. He had an opening yesterday, so M and I went. I told him I had a hard time believing he could fix something that was so complex. No other doctors could promise me anything.
    J and I read the book What Time Tuesday, I mean it worked for this guy and all of the others in his book . Upper Cervical treatment make sense, align your spine and get your atlas right so everything works. After my vicoden days I wanted something to work. We got to Dr. M's office and he had a copy of the book there too. This was it, it was going to be the answer to all of my problems. There was a lady sitting in the waiting room, so I asked her what she thought about all of this. She said she didn't understand it but she has never felt better in her life. Hum I thought, a real testimonial.
    I went back and he asked me questions and I asked him questions. He decided x-rays would be the best way in order to tell everything. As usual everything went down hill from there. He tried an adjustment and as tears started to fall, Dr. M asked if they were emotional tears. What a stupid question, they were tears of pain. He had me go and rest in a big comfy chair. I was hysterical by this point and it seemed as if time was moving so slow. After 30 minutes I got up and in excruciating pain I get to the front desk and told her I was leaving. Gave her my payment and we left.
    After I got home I ate and took more pain medication and laid down. This was a mistake?!? I don't know. Later Dr. M called and said that it was just the tip of the iceberg. I can't promise that I will go back or that this was the right thing to do.
    Today I woke up in pain again. more pain medication and rest was cancelling everything that I needed to get done. Again I feel lost and wonder who has the answer. :(

Finally A Doctor's Appointment That Wasn't For Me

    I took the new medication last night and therefore was very sleepy on Friday morning. The usual pain in the morning was present but not as much as I was sleepy. M had a check-up at the doctor so that I can enroll her in the new school. He said she was healthy, he only wants to check a couple of things at her age. So Monday we will both get blood taken. She's been told, but I'm trying to downplay it so we don't have another scene like we did the last time they took her blood. If I didn't blog it before, M was sitting on J's lap while screaming at the top of her lungs, "Why are they taking my blood...". So we shall see on Monday.
    The new medication did not seem to present with any horrible side effects, not yet anyways that the starting dose. If a little sleepy is it, I will gladly take that. I still have pain but nothing is overnight.
    I have recently been on the TNA The Facial Pain Networks website. This is where someone can talk with other people that are suffering with the same issues ask questions. I met a lady who lives in Las Vegas and we decided to meet. So P came over Friday afternoon and we had such a nice conversation about my road and her road, that just happen to be in the same illness. Everything happens how it is supposed to and meeting her was a pleasant surprise. She has recently been trying a unconventional method to relive her pain. I discussed it with J and he is a little weary after our last try with Dr. T. (Functional Chiro) in Delaware. We'll see how thing come together. My non-friend THE PAIN is still hanging around. As for today, it is only peeking it's head out. THANK YOU!!

Did What I Do Best Today

    With the pain still hanging around like it was invited, I started my day. Not sure if I wanted to try and attempt to do something. I poked around and then decided to run to the store. It was hot out but not the dyer heat we had last week. Forth day on the asci juice, and it seems if I have a little more energy.
    I had my appointment with Dr. T (neuro) later in the day. So I got home and waited for J to get off of work. We arrived 15 minutes early, which only turned out bad because she was running 30 minutes late. By the time she got into the room with us M had fallen asleep on the chair. I'm glad that J was with me to ask some of the questions I needed to, but forgot to write down. Plus it's easier to have him hear it rather than try and remember everything. She is so very nice, I'm glad that I found her. First on the list was the call from last weekend. She rechecked me and said that in fact I DO NOT have Occipital Neuralgia. Great I went through all of that pain from the physical therapy and the steroids for nothing. I should open a booth at the mall giving out medical advice, it would be as good as some of the medical advice I've been given.
    We went over the other options: pain management, gamma knife vs. micro vascular decompression surgery, and different medications. Now I always thought that a Pain Management Clinic took over all of your medications in order to find something that works great for you. Not true, they pick what they do and are more like anesthesiologist. At least that's what I took from the explanation. Next we talked about Gamma Knife, this is a procedure where radiation is targeted at the nerve. The first question I had was if I would lose my hair, what a dumb question, the answer was 'no'. MVD was not on J's list to discuss. He has been against full brain surgery, the thought of them going into your skull for what might or might not work was something he did not like. I guess I just want to be better, I kind of play down the whole surgery thing. After talking, I guess we decided to try another medication to get some relief. I don't know what I think anymore, but no of it seems like that big of a deal to me right now in the moment.
    We left with another prescription...now I know what everybody thinks. She's taking too many prescriptions already. My other choices aren't that favorable, at least not right now. As I add my 13th prescription, isn't 13 supposed to be lucky? This seems as an embarrassingly heavy amount to add to my daily regimen. But for anyone who has not experienced the TN pain, does not know how far a person who suffers will go.
    Tomorrow I will be meeting with another TN patient, this will be good to talk to someone who is going through the same thing, if not more.

One Hot Day

    I couldn't sleep last night. It seemed as if J's alarm went off at 2am. I was dozing off and on, J was coming to give me a morning kiss good-bye and was startled when he saw that I was awake. I was in so much pain, throughout my entire body, I don't know what was going on. CRAZY!!! I asked him to get me a Root Beer, weird I know, but I was feeling sick too. The phone rang at 9am and it was my SSD lawyer. She had a million questions, and said that this was a hard case because it was something rare. Thank goodness I didn't base my day on that.
    I got up and made M and I cream of wheat. I wanted to go to Borders and pick up a couple of books on Pain Management and Herbal Remedies. M  was itching to get out of the house so we went to Town's Square and I was wishing it was a bigger store. The didn't have a big selection of health books. I did get a big book of RX Drugs about the off-label giving or however you call it. It was on the bargain shelf for $1.99, so no loss.
    The time just flew by and we had been at the outdoor shopping area for 3 hours. Mostly because it was my first time there and I kept getting turned around. We only went into 2 other stores and hadn't bought anything. So I don't know where the time went. It was too hot and I couldn't wait to get back home and rest.

What My Body Doesn't Like

    Saturday morning I was feeling ok. I mean I could feel the numbness from the prior pain but I was able to actually get up. I ate breakfast and took the Prednisone. Things went downhill very quickly from there. I was nauseous, my face and head was slamming in pain. I had the chills and again my eye was cloudy. I laid down and couldn't move until about 9:00 pm. I ate a PB&J sandwich but had to pull it apart because me teeth were in so much pain. I decided to call the pharmacy to see if the new Rx was counter-acting with everything else. They were closed. So I put in a call to Dr. R and Dr. T then waited. Dr. R called back first and he couldn't understand why the normal course of treatment is not working. He said that with the side effects it sounded as if my body was rejecting something that it normally makes. He said that I should talk to Dr. T. about an Occipital Nerve Block. But right now I needed to take benadryl to get it out of my system. I wish I would have called earlier in the day, I told J that I felt like I should have been laying on the floor, since it felt like I was hit in the face with a baseball bat. Guess what? We have every other drug known to man but no benadryl. J left to go to find an open pharmacy, thankfully we live in a 24/7 city and on Las Vegas Blvd he was able to find one open. Dr. T called and said to take one of the Tegretal 100mg chewables too. It was quite a list of medications that I took, one that made even me nervous, so I wrote J a list 'just in case' . Dr. T. said that we are going to be taking about 3 options on Thursday. The Occipital Nerve Block, Pain Management or Gamma Knife. Now I worry about my liver and taking all of the pills everyday is getting old. I am taking the morning pills at night and screwing up something so easy. Nerve Block and Pain Management are just band-aids in my eyes. The Gamma Knife scares the crap out of my. High powered radiation, that's not any better. I think that as this disease progress's it takes more of me. Today I took pain medication with breakfast along with 1/2 of a xanax. My friend S called and said that she saw something about Acai Juice. We went to Whole Foods to pick it up. I'll start it tomorrow and we'll see.

WHAT HAPPEND? or WHAT'S GOING TO HAPPEN?

    The last couple of days have been pure hell! I cannot believe that the Physical Therapy has done that much damage. I could barely get out of bed. My pain level was easily about 14-15 out of 10. I felt nauseous, from the pain. I guess the best way to describe it was as if I was scraped up off of the street after getting hit by a truck. I should have been on a morphine drip. How an I supposed to keep a positive attitude? I moved across the country in hopes to be closer to family and I don't even have my friends to help. I hate this pain, I don't want it. I don't want anyone else to have to go through this either.
    I called Dr. R, my new family doctor and Dr. T (neuro) and never heard back from Dr. T and Dr. R's office called as I was leaving out the door to go to physical therapy AGAIN. She said that Dr. R doesn't want me to continue going right now. They are going to call in 'Prednisone' instead. So I guess I'll take that for 5 days, and then we'll see what happens.
    

How Come Everyone Was So Happy?

    Today was an odd day. I already forgot how I felt when I woke up. But J came home at lunch and I was still just like bllaahh feeling. I was hesitating about going to physical therapy. But I better show my new Dr. G that I went. I got there and everyone was so nice and happy. I talked to H (the therapist) and he, even though he's not a neurologist agrees that I have both this occipital and ATN. As the treatment plan started I was in pain and we are going to have to go really slow. I told H that I will take on as much as I can no matter what the pain is.

    This is my life and I will try to make it the best I can for myself and those around me.

I Guess Everyone Is A Little Bit Crazy

     I wrapped up my last new provider appointment today. This was with Dr. B (Psychiatrist). I will point out the good things. He had a Super Comfy Couch, sweet little receptionist and refreshing cold water on a hot day. He was nice and asked a ton of questions. As with all of my conversations I forget the words and he isn't very good at playing 'Guess What Word I'm Thing Of' over and over again. He was patient the other kind of patient. I caught him starring off at the trashcan, I even stopped talking and he didn't notice. Oh Well! He says I'm taking 2-3 times the FDA something or other dosage for sleeping. That is the one thing I don't agree with. I don't sleep, I have medication resistant insomnia. He is going to get the records from Dr. O.G. and see why he was giving me what he was. Other than that I will see him in a month after her gets the records.

    I called Dr. T (Neruo) when I woke up. I didn't get a call back until after dinner time from her nurse. She said that Dr. T said to stop taking the Topamax if it was burning my mouth. We'll give it a couple of days and see if the sensation goes away. Then I see her next week. Today I felt sensitive in my face but not in terrible pain like I was.

    Tomorrow I go in to physical therapy. They said the 1st visit is an hour and a half. I'm not sold on this, just because if they even think about touching my front left side of my face in order to help the back left side of my head then "NO"! I'll check in tomorrow.

This Independence Day I Just Wanted My Independence Back

     The Vicoden and other pain medications aren't working. I am going to call Dr. T (neuro) tomorrow and see what else she has to say. Just take the pain away. I bet I am good part of the population that puts in this request every day. I don't know what anyone can do for me but I will do everything I can to try to figure out not only the Atypical Trigeminal Neuralgia or the newly found Occipital Neuralgia but the high cholesterol, low vitamin d level, hypothyroidism, anxiety and panic attacks. Thirteen prescriptions and I'm still in pain. What is going on? They tell me that it's best to keep the names of the rx's to myself since they are prescribing for off-branding reasons. I can understand that. But if they are not working then what do I do? I go in and they say what they say and then ask if I had enough refills. Yeah, I have plenty. I walk around like a zombie. We had to go to the grocery store today, so I pulled myself out of bed. We also ran into Michael's to have a picture framed that we got in Disney World last year. I run into things and just feel like I just walking to the beat of my own drum. That's if I were to own a drum, and I had a beat.

Thought That Was Going To Be The Death Of Me :(

    I always say 'I can't believe how bad I felt', but I have a serious rare disease. I need to realize that it only gets worse. Break through pain meds that I have aren't even touching it. I told J that I felt like I was hit on the back of the head with a hammer and the the skin on my face was ripped off and the stapled back on. Then the depression falls in. Stupid Lipitor commercial. "If you have high cholesterol then damage is already done. You could have a stroke or a heart attack". I panic!!! Am I going to have a heart attack right now or in 10 minutes? It's horrible. Will M know what to do if something does happen, maybe I should go over with her 911 procedures. All of this anxiety.
 
    The new medication that I have is causing a kind of weird side effect. I have been nauseous and so I drink 7-up. anything that is carbonated is burning my tongue. Strange huh? The pain is still there but a more numbing and not so much a knocked down by a 2 x 4 and other various interesting sensations.