Using All Of The Kleenex

   I spent yesterday crying, I mean sobbing my eyes out.

   I went to the new Neurologist, Dr. J. These doctors here at the Neuroscience Group have impeccable reputations. So I have confidence in what they are telling me. After looking at all of my records and spending 2 hours with me, Dr. J explained that my problem started out as 'Intermedius (Ear) Neuralgia', then it went into my geniculate ganglion in my inner ear. From there it went into my neurons in my brains and got scrambled up in my brain then traveled back down and presents itself as Atypical Trigeminal Neuralgia in all 3 Branches. He said this is why no one ever wanted to do Gamma Knife or MVD because they didn't know where to even look.

    The 1st thing I told him is that "I feel as if I was over medicated". He paused and said, "If anything I think you are under medicated". WOW! He gave me a trial rx of Torkendi to take at night. If by Friday I can tolerate that, call back and they will call me in a rx. I said 'What do you mean tolerate?' He said 20% of people lose their words. I already have that problem. But he means seriously. I can't fathom that he is explaining to me exactly what I have and it makes sense. He also said that we will consider IV Therapy in the future.  He chose to do 2 Occipital Nerve Blocks in the back of my skull. He came in with this needle that was as thick as a toothpick and a syringe as long a a pen. He quickly inserts the 1st shot, and all I feel is horrid pain and liquid going into my head for about 10 seconds...then the other side. Then I went to the lab in their building and they took 7 vials of blood.

   Being from John Hopkins, Cleveland Clinic and a Captain in the Air Force as a Neurologist then telling me that he does not know ANYONE who treats Geniculate Ganglionitis. I told him "This sucks" and he said "yes, it does suck". They do not even have a percentage of people who have this it is so rare. So, basically it does not sound like it is not going to get fixed. This may sound like a pity party for me but how much more can I take? Last night G (my therapist from Vegas) texted me and ask how everything was going and if I was ok? I wrote her back and said that she must be psychic because I needed her.

   I made all of my phone calls to family then it was dinner time. Since I can't swallow much at a time and have to take a pill with each bite. I must have took too big of a bite and started choking. I couldn't breath, just gagging. Finally my food and pill came up. My god this is all coming on so fast it's hard to handle.

   I went to my Pain Management office today. The final decision there, was that they are finally weaning me down on the Oxycodone (so no more narcotics), back on the Clonidine for the withdrawal symptoms. Then in a month I'll finally be off all pain meds. Then I'll see then back in about 6 months. But I'll be under the care of the Gastro and Neuro Docs from now on.

All Was Looking Up

   I was having some good days. As it starts to get cold here I was not expecting it. I hoped for too much. The other day I woke up with all of the white stuff in the back of my throat. As the day went on my esophagus was aching. I was doing all that Dr. S said to; drink lukewarm water, take my pills over time and change my probiotics. It wasn't helping. Then the next day the pain got worse. It was more on my left side and all the way through to my back. It was time for bed, so I threw myself on the bed and asked J to rub that part of my back. I got ready for bed and then laid with the heating pad. I think it could have burned myself without feeling any relief it just wasn't helping the pain.
   I ordered the Peppermint Oil Pills from Amazon and got them right away. I love peppermint but THEY DO NOT SMELL LIKE PEPPERMINT!! You have to take them on an empty stomach. I did and I didn't notice a difference. I take Maylox also, I remember my Grandma taking it all of the time. I can't believe at my age having to do the same.
   So the past couple of days my esophagus has ached and I've been nauseous. I'll call the Surgery Center on Monday to see if they heard back from my insurance companies.
   My face has also started to feel the burning. My ear has felt the stabbing going both low and high all though to the back of my head. It just sucks being me!!!

Finally Botox, Just Not Where I Thought It Would Go

  Today J, B and I went to Dr. S (Gastro) to see what that the test results confirmed. Dr. S comes in the room and sits down. He says "We'll you'll either like what I have to say or not". I mean what can you say to that? At least he's honest. I have severe pill residue in my esophagus. Then at the bottom part the nerves are so tight that the opening is like nothing. He dilated it when he was in there the first time, and was happy to hear that I don't have the stuff in the back of my throat anymore. He said that by dilating that should have helped some. I need to keep a pain journal. Like what I ate, drank and took my pills so that he can find out what is causing my pain.

   We discussed what we could do;
   1) I need to split my pills up more, time wise. Now I'm not sure how to do this exactly. I'll have to talk to all of my other doctors for help. I have AM pills he wants me to take them over a span of a couple of hours. Same with the dinner pills. Then there's really nothing I can do with my nighttime pills.

    2) Drink lots of lukewarm water. This will relax the muscles and make it easier to swallow. I guess              there goes my ice cold drinks.

    3) When my esophagus hurts take these Peppermint Oil Pills. For some reason they will help. I have to see where I can get them because we don't have Whole Foods, Vitamin Cottage, etc...

    4) He can go in and dilate my esophagus again. But that sounded more like a bandaid.

    5) I have to get some lab work and a cat scan of my chest and stomach. This is to check for tumors. I thought when I got the letter in the mail that the biopsies weren't cancerous meant that. He said don't be nervous because there should be cysts, but no one is perfect

    6) FINALLY, the only real thing he can do to help is inject botox into the bottom of my esophagus. Now sometimes the insurance companies do not like to pay for this because it costs thousands of dollars. And it might only last for 6 months to a year.  This would be my only real options he said.

  I asked him if this is caused by pills and he said that any pill you take has side effects so you take that chance. Below are the pictures of my esophagus. The top left one is the pill residue in about my chest area. The lower left is going farther down. The top right is at the bottom of it, as you see there is barely an opening. And the lower right is from inside my stomach looking back up a the bottom of my esophagus. This is a rare disease called Achalasia.

           

            Achalasia is a rare disease of the muscle of the lower esophagealbody and the lower esophageal sphincter.The cause of achalasia is unknown; however, there is degeneration of the esophageal muscles and, more importantly, the nerves that control the muscles.

    

And The Answer Is?!?

   Tomorrow J and I are going to see Dr. S, the Gastroenterologist. I guess see what he has to say. I think that since I've not died yet, I'll be alright. I have a lot of anxiety and I'm nauseated  most of the time. The suggestion was to take a bite of whatever I was eating, then take a pill before I swallow. With the 18 pills I take in the morning I'm done eating before the pills are gone. I have been eating Packers Ice Cream Sandwiches, McDonalds Pancakes or A&W Shakes for the most part. I'll be 42 in December and I feel like I'm 80.
   My question always goes back to ""What did I do To Deserve this?". If anyone has any comments I would gladly listen and respond. I sit in the living room and look at these thin notebooks I have and feel like I want to write M & B one each. Like the stories they wouldn't hear, my story and how much I love them. It's like I feel that if I get bad news tomorrow how do I tell them my feelings for them? I know its kind of dreadful, but they have been so helpful and I want them to know that I have appreciated that too. I'm not going to hurt myself but I get nervous that one of these times I'm going to be put under it will be the last.

Right Out of Dental School

    So I had a lot of dental work done in Las Vegas. This front tooth that was done needed a huge filling done and they did a crappy job. I knew that I needed to get it redone, but that wasn't too high on my list. So came the day to get it done as it kept chipping. I found a nice dental office, that was close to home. They got me in right away. After explaining to the Dentist what I have and what I need done, he got this look of panic and said "Once you get everything worked out medically then we'll see what we can do". He polished it and let me go. I guess I got what I needed but I think I was 15 years older than him. Once 'I get everything worked out medically' I'll go back.

Same Cold Different Day

  I can't seem to shake this cold I have. I'm at day 10 or 11 and it just now is seeming to let up.

  Went to the doctor a while back, since I can't get rid of my Thrush from when I had Epstein-Barr/Mono a couple of years ago. I just kept taking medicine it on and off for years now. They took a culture and are going to let it grow for 6 days . Then they want to do the scope thing since Dr. P (Internist) thinks it went down into in my Esophagus. Then it might be a more rare case. B asked if I could get on Medical Diagnosis. She's so weird.

   Then we went to Walgreens and used my debit card. It was declined 3 times (yeah I was THAT person). So we went back to the car and I pulled up my account on-line. It seems as if I set the auto pay for Home Depot to pay my statement balance of almost $1,500.00 instead of what I thought I was paying. The bank said it would take up to 10 days and Home Depot said it would take 4-6 weeks for a refund. So all and all that was a crappy day.

   My next appointment with Pain Doctor (Dr. C), she suggested that we should try to do Trigeminal Nerve Block. She was completely on my side about getting off of the Opana. She wanted to get started right away since I was in so much pain.

  We did the 1st block and it was very painful. I didn't know what to expect. But whatever happened was not what I expected. I was glad that she (Dr. C) had her partner Dr. N.P. pretty much do the procedure. He has taught at Harvard and was a part of The Cleveland Clinic, which is basically amazing. In which that's awesome in itself. So this nerve block didn't do anything for me, but I seem to be used that outcome unfortunately.

  I swore that I was not going to be put through that pain again. That should be my mantra "I'm not doing that again". I paid for that block for a good week. I guess I shouldn't say 'good'. So the next monthly visit with Dr. C, she brought up trying to do another block. I felt backed into a corner and was worried that if I said 'no' then would they help my in my quest of pain relief.

 Somehow I don't think it feels better the more they do!! We also made a decision to FINALLY end the Opana. That made me feel like a ROCKSTAR!! Dr. C gave me a low dose of Oxycodone & Clonidine (a withdrawal medication). That works for the sweats hot/cold, nausea and I'll spare you the rest of the fun. But I am very proud of myself. I take 42 pills a day. I have been going down on the Opana (Opioid) since last November. I've read bad things about it, and I finally did it!!!! I'm taking the withdrawal medication, which has helped some. But I'm finally off one one of my drugs!!! I did it!!!! There's one or two other's I think I don't need that I'm on, but one year at a time.
  Well after being under sedation one more time (4th time in a month) this time for a
EGD Esophagogastroduodenoscopy in which they did a couple of biopsies. That is where they put you under the care of an Anesthesiologist. He told me because I was on so much medication and my medical history was complex he was giving me 'The Michael Jackson Drug'. Taken under the right care it is very effective. He was right, I didn't feel a thing. The next day I was having chest pains and B & her boyfriend A took me to the ER. While I was there they did and Upper GI X-Ray series, chest x-rays, blood work, and an EKG. They gave me Dilaudid and with something to cut the acid in my stomach. I was still nauseous the entire time I was there so they gave me a "cocktail" made up of Maylox and Lidocaine that I had to drink. SO GROSS!! It made my throat numb. All of the chest pain caused my TN to flair up, but they wouldn't give me anything for my "chronic illness" as they said. My understanding is that as long as I disclose to Dr. C that I got something while in the ER it was fine. Or it was the middle of the day, they could have called the office and get the ok. So when I left I was still in pain.

 Finally I had an Esophageal Motility Study done. This is done while awake and they put a nasal electrode catheter. Horribly gross. They insert the catheter up your nose and then you have to drink water to swallow it. It just feels like there is something in the back of your throat. Until it gets all the way into my stomach. I guess my swallowing isn't working like it should?!? I'll get all of the answers on the 13th. This is just somthing else pills can do to you. Sure I go in for my liver and kidney check every 3 months but the result can be something rare like Achalasia they think.

Getting Aquainted

    I haven't blogged in a long time. Oops!!

1)We made the move almost 4 months ago now near Appleton, Wisconsin. The actual move was TERRIBLE. I mean they packed and moved us again, but we had to drive ourselves. So 6 people, 4 cars, 2 dogs and 2 cats were on the road. Las Vegas To Denver wasn't too bad. J had to go back to Appleton right away, so we were able to stay in Colorado and visit with family for a week. I was so happy to be able to see my Gram, my parents and all of my other family members. Unfortunately J's grandma passed away so his dad had to go back to New York. J's mom just passed away less than a year ago plus their anniversary was in a few weeks. It was a hard time.

2)Then it was off to Wisconsin. We were this big caravan... I was luckily feeling fine for most of the trip. I think because we didn't over-drive and it was always the same temperature in my car. Anyways I lucked out. So we drove up to our brand new home in Wisconsin. We bought it only seeing it through Face Time.

3)Getting ALL NEW DOCTORS!!! Yikes!!! I don't know if I really thought about this when I was in Vegas. Before we moved I made an appointment with an Internal Medicine doctor. Now J was just transferring locations, but we for some reason had to get a different insurance plan. I had already met my deductible with BC/BS and now I had to do the same with United HealthCare. Anywho my new doctor, Dr. P really seemed to listen to all of my health concerns. He seemed to want to make sure that he was getting to the bottom of things. Wow!! This was as change from the doctors in Las Vegas.
One thing that is different here is that even though I have a PPO and can go anywhere (my primary insurance is Medicare) I want, I can't. They are referring me here and referring my there.