My Pain Level Stayed at 16 All Week

    This week has been horrible, horrible on all levels!! The pain started intensifying on Tuesday. At this point I can't recall exactly how it started. I laid around feeling bad all day. Before I went to bed I took a pill for pain. I didn't sleep good and I know that this didn't really help things. Waking up Wednesday I felt a little bit worse. At this point I felt I had the pain under control. I wasn't able to do much on Wednesday either. My own personal hell! Wednesday night I took another pain pill, I have tried to avoid taking anything during the day. Being the only one here with M during the day I stayed with Ibuprofen 800mg on Tuesday but with no help I didn't take it on Wed.
    Thursday early morning I woke up before J. I thought I had been a victim of murder. I was confused or lost in pain. On this 3rd day of horrific pain, the selling in my collarbone was up and my arm felt if it was broken in half. I wanted to call Dr. T's office before they opened and leave a message. At 10 o'clock with no word back, I called again and the only man on staff said, "Oh yeah, what's wrong?" I explained to him my pain and he said he hasn't had a chance to see her yet. Finally 12:45pm, this girl calls back and says "You called?". Was it me, or what was wrong with this people. I explained to her, then she said so you was to see the doctor? I wanted to be out of pain, whatever. Then she said "Our 1st opening is next Wed at 1:30". I tried to explain to her the pain I was in. She didn't care.
    I had to get up on Friday, I had an appointment with an Endocrinologist. I have never before in my life sobbed in the shower. The water touching my scalp, my face, I leaned against the shower wall and cried my heart out in pain. I got myself together and made it to the doctor. He came in and knew I was in pain. So emotional I cried to him. He listened. But the pain I had wasn't his speciality. I decided to go there without asking my doctor. But this fight is about more than just waiting around! He told me that I was taking too much thyroid. He mentioned that after looking at my face shape, the pain in my arm and a few other things. Cushing's Disease. After giving me a new rx for a lowered thyroid, we made another appointment. In 4 weeks I will put this thing in my mouth to get saliva on it and place it back in the container. Then I will need to go at 8am the following day to get my blood taken. 2 weeks after that I will go in and we will do an ultrasound on my thyroid, then go from there.
    No facial pain is a part of this. This is separate, and in addition to my Atypical TN. After I got home it was after-hours for my neurologist. So I decided to call the after hours, I really wanted to talk with Dr. T. But guess who was on on-call for her. Crappy girl. Telling me again that she gave me the soonest appointment. Then suggested I just go to the ER. I said I'm not going to the ER. I've done that and they don't do anything. Beaten from the day I took pain medication at dinner. Then again before bed. I woke up on Friday in pain and nauseous. Remember to breathe.....1..2..3... Okay that's not helping. I guess until Wednesday when I can in to Dr. T's I will try to hang on the best I can.

Hot Outside, Happy Inside!

    Today was an odd day. My goal was to go to the pharmacy. This didn't actually happen until late in the afternoon. I did talk to a man from this program through J's work. They called and we discussed my ailments, medications and hopes. So, as you can imagine I was on the phone for a while. We made a appointment for him to call me back in a month to check in. In the mean while I qualified for a free nutritionist and other services. Yeah!! Something positive. he also gave me the number to this Investigations Therapy. Who knows what they do but I shall find out.
  
    I had to go pick up my rx's from Walgreens. I called in everything last night, but they didn't fill one so I had to wait. Well I started to talk to this lady sitting by me and she's on disability. I was telling her how I was going through the process. She told me that she wrote the Senator or Legislator, and the process went faster. We exchanged numbers so that she could go home and look through her stuff to see what she wrote. How nice, she followed through and called with the information. With J's help I emailed off a nice letter to our Legislator. We'll see what happens.

    My pain level was at time high along with the swelling. Minor muscle spasms. Overall today was good. I am thankful for it and the support I get from everyone.  

My 'To Do List' Keeps Getting Longer, Because I Keep Losing It!

  It would be great if the only thing I lost was my 'To Do List'. I live in La~La Land now. I'm starting to accept that now. I mean it doesn't bother me most days, but then there are others. In Delaware while I was seeing D.N., we spent over a year with Cognitive Therapy. Look at the problem differently:

Problem: I keep forgetting

  How does this make me feel: That I am stupid

   What I should tell myself: I should accept my disease, and that this is a side effect from the drugs

    I may have convinced myself that I could do this self talk and get though more situations. I am my own best therapist, sometimes. I too like any other ATN patient forgets to take their meds, where we put our lists, how we used to be BATN (Before Atypical Trigeminal Neuralgia). I keep forgetting that I was going to get through all of theses books I have, I keep forgetting that I have a hard time reading therefore that's why they are still sitting there. I get up and forget that I have pain, did I have pain there before? I do have new pain walking, to the bathroom, down the stairs. The pain and swelling is in my legs and feet. For two days now it hurts. What is going on?

    Alot still goes on in the world around me. Life doesn't stop. I have 2 friends that are now pregnant, one is a high risk. School is getting ready to start or already started. I have a cousin who is dealing her with her father haven taken his life a week ago. So many others are in dire situations. So I can't just think of myself. Or rather I don't want to think of myself, I want to remember others. That's what keeps me going.

A Saturday in the Life of ATN

    It feels like a dream, my family being here. Really everything feels like a dream. J will say something or tell me to remember something and I will have NO CLUE what he is talking about. This could be something that we discussed yesterday and I will have forgotten. Oh yeah, the dream, I will think I said something and maybe I was dreaming. Confused yet? That's how it is, I try to laugh but I am always afraid that it may be something serious that I forget.
    The newest symptom is swelling. My hands, feet and legs. Crazy! Maybe I walked too much? This brings up another issue. My weight, I just keep gaining weight. I talked to Dr. R. and he said to talk to my psychiatrist or neurologist about that. I really thought he'd be the 'go to guy' but I guess not. I talked to my psychiatrist when I went last. He just looked at me and then started talking about something else. Then I went to see Dr. T, she mentioned a drug real quick then started talking about something else too. Last week one of her staff members called and said a Dr. C will be calling from the neurosurgeons office to schedule a consult for the Gamma Knife. I asked her about the medication (whatever it was called). That girl had the nerve to ask me "are you sure you aren't just overeating?" I said 'no' then she acted like she was kidding. What the crap? Am I overeating? I was so offended..... She called back and said she talked to Dr. T and they are going to have to get ahold of Dr. B. because it might change my mood. It's like a double edged sword. I need to exercise in order to lose weight, and help my other health issues. But I swell and can't get up sometimes so that doesn't really work out. I recall this because I was so offended.
    Please tell me all of this was just a dream...

Losing Faith...if I started with any

    I was so happy and excited to see my mom after a year and my dad after two. My nephews came out also. The house was full and thriving with love and energy. When I went to Dr. T's last week she said I should go up on the Niriton to 1800mg. The step up to 1500pm went well. The morning after I took the next step to 1800mg I woke up swollen. That was on Monday. It started with my feet, then my ankles and legs. The Doctor said that should go back down to 1200mg because my body was rejecting it. Again the withdrawal, feeling like I was going to throw up and every bone in my body ached. I was rejecting that feeling. I don't want to go through this, and you would think that your body would be happy to get any of the poison out. I heard that the Neurosurgeon will be calling me about making an appointment for possible Gamma Knife. Also I see the Endocronologist next week about my thyroid.
     My family left on Monday night and it was sooooooo great to spend time with them. I only had one day that I was really bad that I couldn't get out of bed. My family waited for me to feel better and included me later in the day. :)
   So here I am. I have listened to the doctors and followed all that they have said. But I am no better. I still have Anxiety, Depression, Facial Pain, High Cholesterol and Thyroid issues! I spend so much time devising a plan to come off all of the medication these days. I am currently taking up to 21 pills a day. Who takes that?!? All of my family has come and gone, B will be leaving tomorrow. Then it will go back to being just the 3 of us. I'm realizing that I am numb to many feelings, so it hasn't hit me yet.
    I really lost right now!

Where Am I?

    The night before last was horrible. The neighbors left the dog out all night and started howling around 9:45pm. At 10:30 I was annoyed, I called Animal Control. I'm sure I wasn't the only neighbor who was mad. You have to leave a message for the on-call officer. It was a tough night. J called again at around 2am. Dr. O.G. from Delaware said that getting a good night's sleep is so important for your health. Well no wonder why a felt so bad yesterday.
    I got up and went to Dr. T. (Neuro). She could see how I was doing. Bad. Terrible. In pain. Suffering. She said that since the dosage of the Nirotin wasn't working we could keep everything else the same but go up on that. Stepping up 300mg for the next 3 nights and then 300mg more the 4th night. Then I would be at 1800mg. Her office will call a neurosurgeon and set up a consult for Gamma Knife. I don't know how I feel about it. I really don't.
    This morning I woke up from my drugged up state and went downstairs to watch TV with the girls and laied on the couch. I turned to get up and what the $@&#! I pulled something in my back. A muscle or something. My 'Oh what a day is turning into, Oh what a week'. 

When The Trash Can Breaks

    I bought this trash can on Home Shopping Network when I pregnant with M 6 1/2 years ago. I've taken advantage that the lid always opens when I want to throw something away. The worst thing that goes on is it may need '4 D' batteries. It seems like I take advantage that things will JUST work.
    I started the day with a little Jack Russel Mix barking at the highest pitch. I looked out my window into the neighbors patio (ok, that took me under a minute to think of that word, getting better). I haven't seen this not so young dog there before. This dog interrupted my morning!! Plus why would anyone leave their dog out in the Las Vegas heat. I decided if I saw this dog out there when I got home I was calling Animal Control.
    Feeling a new pain. I don't even know how to explain this facial pain. I was prepared or expected my usual pain(s). So this threw me off. I told the girls last night that we would go swimming today. I guess I was just off today.
    After a HOT morning at the pool we came home and showered. I was drying my hair and my hair dryer (I got this on a clearance sale at Trade Secret was originally $99) slipped off of the counter and hit the ceramic tile. Pieces flew and my heart dropped! Well there was a loose piece jiggling inside. I turned it on and thank goodness it worked, minus a couple of pieces. How could I have been so careless. From there I gave up drying my hair.
    I got on the computer and I got a message from a close friend. She...well she had a bad day! I hope that we hear better news tomorrow. And while I was talking to her my niece and cousins start commenting and texting. What is going on?!? Finding out that one of my cousins dad died today. Oh my gosh!! This day, what is going on?
    I had told B that we were going to start beginners yoga today. The local hospital had sent out a magazine about all of these events starting last week. I thought yoga might be a little bit of exercise that wouldn't hurt. With all of this going on around me I was concerned about others not myself. B and I got in the car and headed to yoga, while I was making calls. I didn't really know where this place was. I thought I knew. WRONG!!!! After driving all around the hospital we found out it was not even by the hospital. I decided we were going home. We ran to Target so that I could get more Vitamin Water...found a couple of other things. So much was going on in my head that I wasn't really there. Getting home talking to my mom and more family couldn't take away my anxiety.
    The bank sent a envelope, finally my new debit card. I opened it up and it was an ATM card. What was I supposed to do with that? Go find out how much something was (including tax) and run to the ATM and then back? J called for me and they sent both but I haven't received the other yet. Why would you need both?
    I take alot for granted, things are supposed to be the way they are. But with one single day things change. Going forth my thoughts are with others. That as they close their eyes, I hope tears do not fall, that they can rest. My heart is with them.

The days fly by...

    Since the last couple of days have been pretty stressful with the fraud thing at the bank, I told J, I was going to get a job. The stress of someone stealing all of our money was pretty high. So maybe it is time for my to suck things up and try to look for a job. Maybe if I get out I would feel better. So in order to start looking for a job I needed to update all of my info on the job search websites. It took me a good amount of time to only do 3. Then I saw a part time job that I might be able to do. I started to fill out the application, I got confused, I forgot things...and in the end I gave up. How am I supposed to work?
    Today I took B to go and get her wisdom teeth removed. M was supposed to get her teeth cleaned but it only took 15 minutes so M will have to wait until another day. As we were heading home B said her mouth was dry, her tongue was numb and her face hurt. I told her welcome to my world. She came home and we got her all situated away, so now she's sleeping. The ladies at the Dental office are so kind and funny. But as I was talking with them I realized we live in 2 different world. My day yesterday was spent in bed and they ran errands after work. They went on living, and I live waiting. Waiting for what will happened next. When the doctor took away the other cholesterol on Monday he had me continue on with Flax Seed, I was lucky enough to take start taking the pills instead of the oil, which was so gross. He also wanted me to start taking Red Yeast Rice. I assume for heart health. I haven't had any adverse effects yet.
    Last night I told J it felt like I had a railroad nail through my ear behind my eye. Today my eyesight is blurry. This is the life I was given for some reason and if anyone can tell me why I am up to hearing.

It comes in 3's

    I wonder how I took care of things before? I take for granted that if a problem arises that I know what to do. Someone stole my debit card number. I they made another card and went shopping Monday. They took all of our money. Of course it takes the bank up to 10 days to investigate. Meanwhile everything is a mess. I had a doctor appt with Dr. B. yesterday. From there the girls and I went to the Bank and then Las Vegas Metro Police Station. All I wanted to do yesterday was go to the doctor's and then come home.
     Well J's car wasn't starting right and he said that it was 5 years old and must be time to get the battery changed out. This wouldn't have been a problem any other time but because the thieves stole all of our money, we had to figure out how to get a battery. Thank goodness that one store was $25.00 cheaper than another.
     This weekend J's phone was having issues answering calls. It's as if the screen was not showing what it should have.
     My in-laws came in this weekend and I was only down 1 day. I don't think that the Neurotin is working. I'm still in pain. I go next week to see the neurologist.  The changes that my regular doctor keeps making with my cholesterol medications. I have muscle spasms, and I decided that I am going to look for a new doctor. Someone who is on my side throughout this whole side. My psychiatrist did not want to make any changes to my sleeping or anxiety medications.
     I spent today trying to go past the pain and make calls to my dumb bank and all of the places that this person went in CA. Not one person would help or give out any information about any of the 8 purchase made. it's just disappointing. I think about if I could and was like I was then would I get any farther? Could I not get all mixed up? All I know is that I was not in Merced, CA on Monday shopping. Booo!