I Have To Think About It, Then Call You Back In A Couple Of Days

   Life just keeps just keeping getting more interesting. How do I deal will with all off the fun? I don't even know what to say anymore...I've turned into a complete idiot with these new drugs. I went to get my Cat-scan the other day. I get to the Hospital Check-In, they ask my why I'm there. I had this dumb look on my face, I couldn't remember why I was there. They finally said "It's ok, what is your last name?". I guess they deal with with this all of the time. Maybe not with so many people in their 40's.
   The next day the nurse from Dr. S (Gastro) said that they found a couple of things in my Cat-scan: (1) Scar Tissue on My Lungs. No I have never smoked cigarettes in my life so this is unknown. (2) The next finding is Asthma and COPD. Where would this come from? How serious is it? (3) I had a hysterectomy almost 10 years ago and I have one ovary left. There are 2 cysts on it. It just keeps coming and coming and its hard to take it.
   I lay around sometimes and seriously have NO ENERGY! Where does it go? Is it because I'm ill? How many different things can ones body deal with?
   Awhile back I think I mentioned that lost my Social Security Card. While we were all sitting around the table the other day and everyone was helping me finding other SS offices. There is this form to also fill out. As I was filling it out I noticed that it asked for my parents names on my birth certificate. Another place it asks for my parents social security numbers. I called my mom and that was a given. Already knowing the answer I called my birth father. His wife picked up. She said "Hi Ali, How did you get this number?".  I said "I picked one of the one's I had", thinking what an odd question. The following  when like this;   (M) me  (F) Birth Father (J) His wife
(J) How are you?
(M) Good, Thanks. Can I talk to my dad?
(F) Hi, A______, What can I do for you?
(M) Hi, Well I lost my SS Card when we moved. I was filling out the
       application to get a new one. It asks for my birth parents SS #'s.
(F) Well, I have to think about it, can I call you back in a couple of days.
(M) Sure. I'll talk to you later.
(F) Goodbye (He's always very very formal)

  There is a spot on the form that I marked [ ] Unknown all along. But it's just the fact that I thought I could ask and he would give it to me. I'm not lying about the fact that I'm an idiot and lost it in the first place at the DMV. He didn't even ask how it happened. So I marked unknown for my birth father as sad as that is.
   The following day (J) calls and makes polite conversation, I don't mention my dads birthday on that day and she doesn't mention the SS #. She just wants to hear about M. But I'd like to mention too that I do have another child to her. This was the the first time she has EVER called me to make conversation in like 20 some odd years!!
   I'm going back to the Surgery Center on Monday to have EDG with the Botox in my Esophagus done by Dr. S (Gastro). I hope this helps with swallowing. I finally met with Dr. M (Therapist) that the doctors from the pain center wanted me to see.  I get in about 20 maybe- 30 minutes to give the quick run down. then he just starts in about, he is just the best in his field and if his mom was alive she would be so proud of him. This went on for the rest of the hour. After that he gave me a 40 question tests about pain medications. Like 'do I count my pain pills?'. I'm not even on anything anymore so he's so dumb.
   I did have an hour long phone conversation with G from Vegas. I'm just going to keeps seeing/talking to her. Because I don't have to start all over with her. I saw her once a week for over three years. I already have that close relationship with her. She cares about my whole family and that makes a whole difference.

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.

Round and Round I Go

   A couple of months ago I went to go and see a new Pain Management Dr. (Dr. Z).  He was so far away, but what's a drive for some relief?  J took off of work to go with me. I was honest and told him what the last PM Dr. said. He knew of him and said I was in better hands with him. He typed out all of notes while we were in the room, and I was able to correct the things he had understood. He listened and answered all of our questioned. He said to start off he would give me Gralise (- new version of Gabapetin. I was to changed immediately. I had an upcoming surgery to have my Deviated Septum corrected. I had one week until this procedure. Changing over sounded easy, I mean I was only changing my Gabapetin to a similar drug. That week was hell! I couldn't function, the pain was horrible. I took M to school and B would pick her up.  The night before my surgery I was finally able to pick myself up off the ground. I knew this type of surgery was going to be hard because I didn't want my facial area messed with. But the positive side would be that I wouldn't have anymore sinus infections.
   Now I didn't really research this procedure...that was good and bad. It was an outpatient surgery and they said to make sure you are able to rest 5-7 days after.  Well of course I have that kind of time on my hands. I woke up in the post-op and my pulse was so low, but my pain was horrible. The nurse I got was kind of crappy to me.  So she asked me who my ride home was and I told her it was my husband. She goes and gets him, although I had been on a lot of medication, as soon as he comes back I swear she starts flirting on him.  The was very unprofessional. Whatever!!!
   Now I had a great doctor (Dr. G) but they DO NOT lie when they said I needed that downtime. I know it triggered my Trigeminal Neuralgia. I was in extreme pain, plus knowing my TN was alive and screaming. Along with the withdrawal and starting a new medication I was...I don't think there is a word to describe the pain. But I know my level was a 25+.
   The next month I went to another location of the Pain Management Doctor. Dr. Z wasn't at this one but I got a really nice guy there (Dr. D). I have seen him for 3 months now. And when I go in a STATE that I'm over-medicated. Realistically I know there will never be a day when I will be medication free, but just less. A lot less---

Tired and Sick

   It's hard to keep going sometimes. I couldn't even move a couple of days this week. I only picked M up from school twice this week. It was rough, I can't believe I am like THIS! It scares me, because after four years of being ill it feels like it only gets worse. I told J one night that it feels like I should be in the hospital. I went to see my M.D. twice. He told me that unfortunately when you are as sick and have my diagnosis, I have to accept that there will be good days and bad days. Lately my bad days sometimes do not even involve my facial pain as much. I fell as if I don't have any energy, I am lightheaded, no appetite, pain throughout my entire body and different Trigeminal pains.
   I want to have support from my family. I guess that after all this time everyone is getting tired of hearing about it. I feel about the same but unfortunately I don't have a chance of escaping the hell I live.
   The Pain Management Doc I have been seeing finally sent me a dismissal letter. I told all of the rest of my providers. That makes me feel like crap. Like I'm doing something illegal. I take everything I'm given and how they subscribe it, but some jackass accuses me of selling my scrips with my daughter in the room. Then yells at me saying he has too many other patients to see. I don't need that. I'm glad that I'm going to get a new one.

My Life Is A Blade On A Fan, Spinnin' Round & Round

    I'm suffering from so much anxiety. How do I keep all of this together? Be a Loving And Supportive Wife & Mother, this all takes a lot. I knew at one time I could do it all. Four years seems like it flew by, but on the same hand it dddrraaaggggeeeeddd ssoooo ssssslllooooww.
   J and I decided that I wasn't going back to see the Pain Doctor we saw on Saturday, that drained me out. I called the office on Monday morning and the sweet little receptionist was very understanding. She said that I didn't have to bring back the RX's, I could just shred them. I wanted to make it known that I wasn't going to fill them.
   Another issue arose, I was running out of my pain meds. I called Walgreens and they had not gotten that prescription in, and they still don't know when. They had 10 days, worth but if they gave me that then I would have to forfeit the rest of the script. Dumb I know, but I guess that's the law. I called the old doctor and since they hadn't dismissed me (yet), they could give me a prescription. They gave me the the wrong RX the first time, and then I had to try to get a hold of them to get the correct one. I felt  like they are doing this on purpose. The things that run to my mind. It's likes circle, round and round.

Life is Ending or Slowly Getting There

   I try to keep my family out of my posts but I had a Great Aunt pass away last night. So I must send my farewell to her. Then I have another close family member just hanging on...my thoughts are always with her.
   I had a rough week, I thought I was getting the flu. I have been on 2 separate antibiotics in the past couple of weeks. Last week I thought I was in the worst shape. I called my Grandma crying, asking if she heard of anything to help. I already take 50,000 IU of Vitamin D a week, 1000mg of Vitamin C, Cultrelle, 50mg of Zinc. So I don't know what else I needed. I was nauseous, my body hurt, I have a temperature. I didn't think I could move without throwing up and I had to still go get M from school. So about 2:00pm I started to get up and took Airborne. I picked her up a little bit early so I didn't sit in the car and then have to go walk up and wait at her classroom door. On our way home we stopped at BK to get chicken nuggets. I wanted to make some Chicken Soup. That seemed to help a little. It took a few more days, actually today until I really felt better.
   Yesterday we met with a new Pain Management Doctor. We arrived a few minutes early. The office stunk, but the girl in front was very nice. She gave me a New Patient Packet that seemed like it was 16 pages long. I like to fill out the packets at home, when I have time to write EVERYTHING down. They were running about an hour and a half behind. We go into the room and I'm not even kidding, it was so dirty. There was a huge stain on the rug. The paper in the table hadn't been pulled down and changed (there was still writing on it) & finally there was a dirty cup on the magazines.
   He wouldn't let me speak, and when he did, he wasn't patient enough to let my mind make the words. I even tried to tell him that all of the medications made my mind mixed up. He also kept looking up to J, as if talking to him.
   He said that I have to go see this Neurosurgeon here in Vegas. He said that the Surgeon who did the Sphenopalatine Ganglion Block(SPG) at Cedar Sinai missed. I was misdiagnosed. Wooh stop there! I went to Cedar Sinai because they are the best of the best in Trigeminal Neuralgia. He talked about putting a pain pump in my face. This was after they re-did the SPG Block. But he has the nerve to say that they did it wrong!?! After we left there we stopped to get something to eat and then home. Later I feel asleep for a couple of hours. That doctor visit drained me, I was upset. I can't redo all of that again. 

The Red Robin Incident

   It's been crap over the past couple of months. That's the nicest word I can say. I have been taking Anti-Viral medication since the end of October. I have just a couple of more weeks of it. I don't know what to do after that. My I.D. (Infectious Disease) Doctor is a weird guy, as they all are. I need to make an appointment. I have an appointment with the Neurologist, I'm not sure why or what will be talked about. Hummmm.
   I was also given a huge dose of steroids from the I.D. Doc. It was too much, so coming down was like hell. I will call one time the 'Red Robin' incident. It was bad and it was because of  Roid Rage.
   Then there was the time I was in hospital, 2 times in six weeks. Once because I was having an allergic reaction. So that was just a ER visit. Then next time I was sitting in the living room and I started having chest pains. If I moved it hurt more. Within minutes J had his shoes and sweatshirt on, ready to go to the ER. I was screaming out in pain. They got me in right away and said I was not having a heart attack. That was good. We were there for almost 6 hours. They had no rooms, even for the the people in the ER waiting in the halls. I asked if they could transport me to another hospital, since I was needing to spend the night.
   I have an appointment with Dr. R tomorrow. I hope he can help, since he gave me some anti-biotics a couple of weeks ago, he said I had a fever and I wasn't getting enough oxygen.
   When someone says 'How are you feeling?', I wonder if they mean it. I feel like crap, I have to get through these days. I know that I have other much older family members that are on the verge of dying. They have lived their life fully and suffer at the very last. I feel very sad for their pain.  I haven't lived my full life and suffer.
   My eyes hurt and go blurry. I get nauseous and I'm tired all of the time. I don't enjoy too many things, I don't follow through and I have had thrush in my mouth forever. I wish I could scream and throw things, but what good would that do? I'm getting tired of swallowing all of my pills, but what are my options? If I don't take them then I suffer in pain for a couple of day after. Sometimes my left side of my face feels like it was rubbed with sandpaper. And I wonder who stabbed me in the ear, when it hurts much more than I admit.

Mono...whatever

    I really can't understand where Mono comes from. I had to get my blood taken for (1) Dr. R. - he wanted to see where my liver and kidney levels are. (2) Dr. L. - he is my Endocrinologist. My levels were good, so I only have to see him once a year now.
   While I was at the Lab, I asked to get my results from last month. There were negatives and even more positives. (deep long breath) I then stopped at the radiology place to pick up the report and the disk from them. The report didn't say anything. That was good.
   When I got home I looked up all of the acronyms. It's doesn't seem like mono, but it does have to do with my compromised immune systems. It does also have to do with needing to see the Infectious Disease doctor. I go tomorrow. I don't know...I'm freaked out and tired of feeling this way. I don't know what to say except, I want to find out and I'm scared.

And These Are The Days Of My Life

   I had nothing to do today, no doctor appointments, nothing! I needed this. Since I talked to Dr. R. about going down on my Tegretol, I started today, he said since I'm at 800mg, I have to go down slowly. Starting by going down 100mg every 2 weeks until I'm at 500mg. Then I need to see him in 6 weeks and I'll have to stay at that level for awhile. But he said if anything feels weird call him immediately.
   I called Dr. G's office and asked them about the referral to the Infectious Disease Doctor. Why wasn't I given the referral in the first place, then I could have made the appointment on Monday. I called and made the appointment for October 22. I mean how can I have had Mono this entire time and not infected anyone? I guess I'll have to wait and see what he says I have. The office is on the way other part of town, which sucks but I need to find answers. Wait...this sounds oddly familiar. I think for the last almost three and a half-years I have been saying that I need to find answers. The medical community gets paid, if they think not very much, then the patients can't be blamed, because they agree to take my insurance plan.
   My dad keeps saying that if I say 'I'm losing my insurance' then I would get a quick answer. I just laugh, he's funny. Also, when my Grandpa was alive he would always say you have to make sure what they are telling you the right thing. I respect some of my providers that take the time to listen and care, really care. Another day is over.

Finding Answers

   My day started off crazy! M woke me up as my alarm was going off. I opened my eyes and it was a weird awaking. This was THE DAY I was going to get my results. I got ready and took M to school. B had to be at work BWW the same time I had my big appointment with the Neurologists, so I dropped her off early. J met me there. On my way over I had a gut feeling that Dr. I. did not send over the results of my EMG from last week. So I called and his office said they will look at it and then call me back. I knew they didn't do this, they just keep dropping the ball. I arrive at Dr. G's office  and no they didn't have the results. As soon as the Nurse says that, my phone rings  and it's Dr. I's office. She said that he didn't even do the report yet. Great! Dr. G. comes in and with his strong  Russian accent says that I do not have MS. Thank god! But what I have mimics the MS symptoms. He said that I have Epstein Barr Virus. Basically Mono or The Kissing Disease. But then he said I have to refer you to an Infectious Disease Doctor.

Hot Or Cold?

   J says he's pretty sure that I have the FLU! Gross! I could barely get up this morning, which was nothing new. As the day went on I felt worse and worse. The couch is getting more uncomfortable, flopping from one side to the other. Thank goodness M likes to get me a cold washcloth, which she did several times. Around 3:00pm I dug myself up the stairs and took a shower. I didn't know if this was a good or bad idea, even when I was in the shower. My skin hurt, I was getting the chills. Hot/Cold I didn't know which one I was.
   Everything started on Wednesday. After M got off of school, we all went to Walgreens to get our Flu shots. I wanted to stay on top of getting sick this season. Among everything else I started to go downhill after that. I had plans to do a girls night on Friday night. I made a friend with one of the other moms when M was in the first grade. I thought everything was fine, as I do with many of my friendships. I expect 100%, but I will in turn give 100%. This was not the case as the girls got older. I was sad but understood that all friendships, as said I heard in the past, are for 'a time', 'a reason' or 'a season'. I guess this one has fizzled out for a reason, the girls haven't been in the same class for the past 2 years. As I have become more ill, she has backed off, and that is fair. I went back and forth with myself and J as to go or not. I decided that I finally would. They gave us a nice dresser for M's room that was in their garage early in the summer. We offered to pay them but she said that "maybe we could go to eat sometime". So I felt it was more of something that I should just get done. I laid around until about 2:00pm, when I had to get ready to go get M from school.
   So Friday night comes and I go and pick everyone up. We ate, and I just went along with what everyone wanted to order. Then we went to see a movie. And I took everyone one home, not hard because they are all neighbors. But I have put on another 10 pounds since I last saw everyone. There is this one lady that spend a good point of dinner talking about how she wears a size 00. These women are all of sort of the same decent and must think that I am just fat and lazy. At least that is the way the flow of conversation was going..."you were so skinny last year". Yeah, I had C Diff & I was sick for 6 weeks, plus I take more pills everyday. Touchy subject for me right now.
   This day is finally over and I hate to think of waking up to another day like this.

An Electrilcfyling Day Yesterday

   I'm not sure if that's a good title or not. I haven't blogged for quite sometime now. Things happen so fast, life rushes from one day to the next never caring if you are hanging on or not. Well I barely have a grasp right now.
   I have so much going on in my life. Within the last month or more I've been per swayed by my doctors that I may also have MS. I can't express to you how I feel. I have been learning how to deal with my Atypical Trigeminal Neuropathy then here comes another quite devastating illness. What did I do? I mean, to get this? To already have the one I already have? Then have another? I don't know....
   Yesterday I had an upper EMG. J went with me and wasn't impressed. I have to say I have my complaints about that office. They knew when I walked in yesterday. The apologies started without prompting. An hour later, Dr. I. entered the room. I got out my notebook and started reading off what I was going on. He agreed that they are having some issues with staff. All of that aside I need to get the EMG over. Tears running down my face it was finally over. I came home and felt like crap. How else can I describe it.
   I can't wait until the 30th when I find out the results of the MRI, EMG and the Evoked Potential Studies. Hopefully I hear more than, "I think, maybe so and so is wrong, but be patient...blah, blah, blah".
 

Feeling Down

   It happens, it really does. Feeling down is a hard emotion to explain. It's not like I'm feeling sorry for myself, it's feeling like I'm at a brick wall. Let me start at the beginning of the day yesterday. I went to work out (mainly treadmill). Then came home to take a shower. So that I don't go into exact detail, I'd like to explain something. I am home because I was found incapable of working due to my illness and the medication that I take. I am not home for others to assume I can always do things for them, because I never know how I will feel. I'll leave that at that.
   A little bit later on I got a text from one of my cousins that my great uncle is pretty ill. After, I called my mom and to tell her. Her and my dad were at the nursing home where my uncle is. They were having a meeting with the home about bringing hospice in.
   Now it wasn't a great news day. But coupled with pain I start to think about there are people, older people that have suffered less than 8 or so years and there is an end. One uncle who hopefully has a successful surgery, and another that there is nothing else they can do. His body is just giving out. Now comes the feeling down part. In 4 days I will be 39 and thinking that I have X amount of time to live with this illness. It's a rather hard to swallow. It's the unknown, J and I were talking last night and I was very tearful. Why are certain ones chosen for certain things? Some for greatness, some for heartache, illness, loneliness. J points out that I am lucky that every single day the pain is not a 10+

Learning to Accept

   In life there are so many things thrown at us that we have no control over. For example: I was given the parents I was given, and I may never know why. I love my mom and my dad was very abusive and has many demons of him own. I was close to my sister until she started show signs of sever bi-polar, then she left everyone including her kids to start a new life in the world she created in her head. It wasn't until the last couple of years I have learned to accept and shed no more tears over either one of them. Because I was given alot of help learning to accept. Talking with professionals helped me learn to accept the things I cannot change. Now that I am 1 in about 10 million that suffers from having pain on both sides of my face, I have to learn to accept it. What is now difficult is that last time I was working and talking with others that we going or went through the same thing. This time it is hard for others to know what pain I'm talking about.
   My journey is long and I have to be patient. That is so much more difficult to do than to say. I mean there is no one to forgive or nothing I can change. It is just learn to accept to be in pain for the rest of my like. In 6 days I will be 39. Yes only 39!!! Any help I can get would be great.

Laying Low

  October was a busy month. We went to Los Angeles to see The Director of The Pain Clinic Dr. G-R. He is from South Africa, I like their accents. But he ran through the visit and said that I should have the Root Canal done and then come back for another SPG Block. The one I had before was done trans nasally. In his research he has found that that does not work. So that would make sense why the last one failed. He said that from all that I have gone through, it looks as if no matter what I have done it will cause nerve pain. So not only on my left side but my right side as well. ARE YOU KIDDING ME?!? This could happen with something even as small as a cold, ear or sinus infection. This is not good. So we came back and I had the Root Canal started. Thank goodness I see such a phenomenal Endodontist because that went horribly. I was in tears and my pulse was higher than the normal 110 range at 119. He kept numbing me and numbing me, but I kept getting sharp nerve pains. There was only so much that he wanted to do since this was bad for everyone. I made an appointment to come back to finish it.

We went back to Cedar-Sinai to have the SPG Block done again with Dr. Z. (He is the doctor for Dancing With The Stars). It was bad. I woke up in so much pain, burning pain and no amount of medication with make it go away. They discharged me and we left to return to the hotel. I'm glad that we stayed there because I felt and looked bad. My face was swollen as you can tell. With this procedure they put you out and with a needle go into my face. They use an x-ray (fluoroscopy) guidance to go into the ganglion. As you can see in the picture at the top, how far into the face the needle actually goes.

So we came back and I called Dr. G-R on Monday after we faxed over my pain diary. He said "Since it doesn't look like it worked, I'd like to have you fill out a questionnaire and come back to meet with me and a physcotherapist. It looks like we will have to treat you pharmaceutical." No Way!!! I'm done. I don't think he listened when I told him that I have doctors here. And that I have already tried so many things. Really!

As of right now the pain has not stopped and I am looking at possibly have to get another root canal. I told the dentist that just because my teeth are ultra-sensitive I don't want to get root canals in all of my teeth. But I physically and mentally can't tolerate any big changes.

Drowned in the Root Canal

    I started to catch a cold that M had. Figures! I still went to the gym to work out, as I joined over a month ago. Then I went in to have the root canal started. Dr. A.G. numbed me up and gave me 3 shots. I was overheating and shaking. They took my blood pressure and it was low, but my pulse was 124. I just wanted to get this show on the road. He came back and tapped on the tooth, since I was still feeling it he numbed me more. After a few minutes he came back and started to drill through my crown. The pain was shooting into my ear and all around. He deiced to numb me 6 more times all around the tooth. Finally I was numb. Towards the end it he put the file down into my tooth and I almost jumped out of the chair. The pain was horrible. I was crying and just started apologizing. What a pain in the ass I was being. He just kept telling me that the pain was from my neuralgia. I realized that, but couldn't seem to get it under control. After he decided to stop of the day they gave me Advil and I also took 3 oxycodone. I wanted to just leave and get home. So I'll go back in two weeks to finish the fun.
     On Monday afternoon I called Dr. G-R from Cedar Sinai. They connected me right to him. While I was there he mentioned that this guy who trained under him for a year was practicing in Las Vegas. If he did the Blocks then I wouldn't have to go to LA each week. He said he'd try to get ahold of his friend again and call me back. He returned my call yesterday morning. Unfortunately the guy in Vegas does not do this procedure, so we will have to travel back and forth. It is what it is but I'll have to first get this tooth taken care of and then go forward.

Back to Blogging

     Six months later and sometimes I wonder how I am able to get through some hours, days or even weeks. This summer was rough. I had a long battle with C-diff. I lost 18 pounds and dealt with the side effect from the medication which included Thrush in my mouth. I've had some dental work done which is leading me down my current path to hell.
     About 2 months ago I had an old filling replaced with an onlay because of more decay. When I had that done I went through 5 or so days in extreme pain. About a months ago, I had a sudden onset of sensitivity with a tooth that had a 10+ year old crown on it. I got right in to see the dentist. They decided that I should have the crown replaced. My parents were coming in town the next day and so I decided to wait until after they were gone. I was having a hard time because this was causing nerve pain on the right side of my face. I had the crown done and the pain was excruciating. J had an appointment with the dentist that afternoon of the same day. I told him to get a referral for me to see an the Endotontist. I was convinced that I just wanted the pain gone, and knew if I had the nerve removed this would help. I called the same doctor who did the surgery on the front of my mouth earlier this year (Dr. A.G.). I couldn't get in for 4 days. When I saw him, he was dumbfounded. He did many tests but was hesitant on doing anything until I saw someone about my facial nerve pain on the right side. Was it spreading to the right side also? How could I live with this?
     Dr. A.G. made a call and came back to tell me that he wanted me to go and see this specialist at Cedar Sinai Medical Center in Los Angeles. He wanted me to get in the next day if I was able to drive down there. I freaked out and was sobbing. What is wrong now? What is he not telling me? I called J and my parents while sitting in shock in the parking lot. How much more can I take. J and I made a fast plan to be able to get down there the next day. M didn't have school so it worked out.
     We left at 8:30am and made it to LA by 1pm. Here we were waiting to see what the Director of The Pain Center, this "World Renowned Specialist" was going to tell us. We waited in the reception area for only about 10 minutes. We went back and waited for just a few more. Dr. G-R came in and was accompanied by a Resident. He did a few of the same tests some of the others have done. He went through all of my blood tests and the many MRI's. He asked if I've ever had a Facial MRI, I didn't even know they did those. He was so knowledgeable. He told me that since I have such severe facial nerve pain on my left side that anything could set off the pain on the right side (ie. cold, sinus infection, ear infection). Not what I wanted to hear. He said that I should go back and get the root canal done, possibly have the tooth extracted if I didn't get any relief.
     From there we discussed my left side. He tried to get ahold of another specialist within Cedar Sinai, without luck, he asked me to call him back today. I was like a Christmas present to him. For someone who likes to research I was a bag full of things that didn't add up. He wanted to try another Nerve Block in one of two places. He was fine with all of the medications I was on, but wanted to get to the root of what caused everything in the first place.

Stress Doesn't Help

   Again the TO DO list. Now I'm sure everyone has one and it grows everyday. Mine stresses me out, although it may not have much on it feels like it adds 1,000 pounds on my shoulders. I've been really stressed out lately and when I saw my one doctor last week he said it didn't seem like the Xanax was helping. He gave me Valumin. I don't feel much different.
   J is gone for the week with work so it's just M and I. I started walking in the mornings. I have to push myself because when I have pain I don't want to, but I tell myself it will be over before I know it. I have been gaining weight about 1/2 a pound a day since I started to walk and cut out pop. It's very frustrating and I can't imagine what would cause such a rapid gain.

It's Hard To Predict

Since the doctor appointments have slowed down then I have less to stress about. Until last week....

I had a 6month check up with my Endocrinologist last week. Before I went in I had to do blood tests.  I thought this was going to go smooth. We talked about how I have been feeling and I thing it's the same. We went over the results and my cholesterol were high . My Tryglicerdies are at 405 and total total cholesterol is over 240. They weren't able to measure my LDL's because my  other levels were too high. I was told i needed to go and see my PCP Dr. R. and discuss the path I need to take. Yesterday I had an appointment with him and we started out with the sinus infection I have, AGAIN!! Then we talked about the pain and how the meds that the pain specialist give me aren't even touching it. I told him how I lay in bed in pain wanting to go to the ER. He said that the Pain doctor was giving me such a low dose that I can talk more thank 1 or 2 of the pain pills for the horrid pain. That was a relief. Then we talked about the other issue. He is going to have me start taking  Krill Oil and then I will check my blood again in 2 months. If there is not change then we have to be more aggressive. I started to walk in the mornings and did so 3 times this week, we have cut out all pop this last week. In a couple of weeks I will start to work with my dietitian again. I'm holding all of this helps. I'm up on the amount of pills that I am taking again but there is no way of getting around it. This is what my morning pills look like.

Tough Week

    So after finding out that the SPG Block was a lose-lose, I decided to take time to work out my sleeping medication. Last week I saw my pyciatrist and he said the last dosages he gave me were only starter doses. So we upped both of them. It still takes me forever to fall asleep but I get a good 8 hours which always helps.

   Everyday last week I seemed to be at the pharmacy picking up a refill, I was doing good when everything came due at the same time. I called when I knew that they had not refilled my Tergretol XR, they said they had to order it and it wouldn't be here until the next afternoon. I told them I was completely out of it and they said still tomorrow. I usually get a text message that my rx's are ready to pick up. I went on with my day and didn't think about not even getting a text. So after J got off of work I remembered and had him swing by and pick it up. I took the afternoon dose and thought I would just go on. The next morning J and I picked M up from her sleep over and went to eat. By the afternoon my head and face were starting to hurt. I felt sick to my stomach also. I suddenly remembered that I had skipped my morning medications. CRAP!!! I ate something and then took my afternoon doses, but by then I was in too deep with the pain. My face was hurting and I felt as if I was shot in the head. All I could think about was what would happen at the E.R.. But I couldn't even communicate with J that I needed to go. I took a pain pill and that didn't help. I had J get me 2 -100mg Tegretol Chewables. He wouldn't let me take anything else. I just laid there. Sunday I woke up still having pain but not to the magnitude for the night before. I didn't do anything Sunday, and Monday I just took M to and from school. Today hasn't been much different, but the pain is starting to fade. I can't believe that I missed my medication and (2) days in a row at that.

"You Win Some, You Lose Some"

This week I had the SPG Block done. I went to the surgery center and my Pain doctor preformed this procedure. We checked in at 6:15am and at 7:45am they finally called me back. I could have slept for another hour, but no. They started an IV for fluids and about 45 minutes after that I was wheeled into the the room. I still hadn't seen the doctor after all of the time. There were 4 women in x-ray vests telling me how to lie so my head hangs off of the side. As soon as they injected the medication there was Dr. B.. He was talking about how over the top all of this was, just for a Qtip. The next thing I felt was that innocent Qtip scraping my brain. Then I was in the recovery room. So I lost time somewhere. But the Qtip was still in my nose and sticking out about 2 inches. They left it in for 15 more minutes and then pulled it out. Okay so that hurt and was terrible. This was not what I was told. The nurse that discharged me said it will take up to a week to feel any relief. I only stayed a short time after that and we were out of there by 9:30am. They day was long and painful. Even with my pain medication the pain wouldn't subside.

I woke the next morning and the pain was still there. I got a call from Dr. B's office and they said I missed my appointment and if I didn't come in I would be charged a No Show fee. They never told me about an appointment. Whatever, so I left right away and got there for my so-called appointment. I saw Dr. B. and he told me that I should be feeling it now, not a week like the nurse told me the day before. Then he said, "it was only a Qtip so you win some you lose some." I lost alot, I was planning on this working and it didn't. Every time it seems as if my possible options are getting smaller.

I need some time before I look into my next option. This may all sound easy and simple but to me this is painful and rough every time I make changes. So for now rest.

Voting For The Good

Since it's Presidents' Day I can bring up the subject of voting. I wish to vote against feeling ill! I vote for a Super Pill to be created. And lastly I vote to have all of the answers. Just let me know where the polling will be held.

On Valentines Day I had another appointment with a Neurologist. This guy was close and therefore would be alot more convenient than Dr. S.D.. My appointment was at 2:30, so J was going to get off of work a tad early and get M from school. I felt horrible that day, with much pain. It was a good day to go to the doctors. The doctor came in the room and he was a good looking guy, he reminded me of Patrick Demsey. We started talking and he kept saying surgery this and that. Mid-way though our conversation I looked at him and said, "I thought only Neurosurgeons can do those surgeries", he looked at me strange and said "I AM a Neurosurgeon!". My witty reaction was, "huh?". Nice going, I firmly believe that NO doctor should ever have to explain what is speciality is at an office visit. How embarrassing, was I really this out of it? I do have an explanation to why I thought he was only a Neurologists. It turns out that has a brother who is a Neurologist, with the same 1st initial and last name. I thought I made an appointment to see his brother. There was no way to try and turn this around. So I just left.

The next day I still felt pretty bad. It knew it was the calm before the storm. Since we have decide to look for a house to buy, I went out with the realtor on Thursday. I felt kid of weird as I got in her car. We drove around to look at 5-6 houses. I felt alittle car sick going back and forth. I used to get carsick a long time ago, but haven't in a while. As we left the last house to return home we were talking and all of the sudden as she pulled onto the highway I threw up! Thankfully in my jacket but out of no where. She pulled over and I must have thrown up 5 more times on the side of the road. How horrible! I got back in the Cadillac and apologized, I was so sorry! She was very nice about it. I have not thrown up in over 7 years. At least before M was born. After I was fine and laid down when I came home. I remembered that the Neurosurgeon gave me muscle relaxers to take 3 times a day. I started it on Wednesday night and also took one Thursday morning. I called the pharmacy and spoke with the pharmacists. She said it might be the added medication, alot of my pills have the same side effect of dizziness and therefore that one might have been the one that set me over the top. I was late to help at school but went again on Friday. I had this on and off sick feeling. As I'm writing this I just thought that it might be the new sleeping medication I started the week before. Who knows, but I hate feeling like this.

On Saturday J, M and I went to go look at more homes. We as looking for a very specific home. We have moved quite a bit since we have been married. J used to stay with me at my place when we 1st met. Then we moved in together and bought our first place shortly after. We moved from Co to NM then to DE (we moved twice there), and now to our current home. We know what we are looking for: sq footage, neighborhood, J's commute, M's school. None of the areas we looked felt right. Did we want a pool or no pool? We also searched over 300 properties online. We were almost home on Saturday and we went to look at 3 new communities here. The 1st one too big, the next one too small. The 3rd one was it!! Right when we drove in, it was lovely. We got to see different Lots and we knew. We came home and looked the floor plans over. We saw 2 models, but the one we liked did not have a model. That said I loved the neighborhood, the commute would be the same for J and M would go to the same school. We know what we need as far as space and even though we didn't physically see 300 homes we fell in love. I would love the feeling knowing that we were home.

Losing Time

   I had another couple of good days...followed by some rocky periods. I made it last Thursday to help in M's class. It's pretty easy, I mean it's only 1st grade. Friday I finally got to read a little since September. I laid in bed until around noon and then got up. I wanted to go out to eat since I wasn't having any major pain. After J came home we left and went to The Cheesecake Factory. It was so pretty out. We sat on the patio and enjoyed an early dinner.

   On Saturday M was invited to a classmates party. On our way there a guy driving in a different lane and something flew out of his window. I asked J what that was and he said I think it was money. That's what I thought. We turned around and since we were the only ones who did that, we collected $46 total. When does that ever happen? Well after the party we came home and hung out. I could tell I was on my feet a lot because my legs started to bother me.

   Sunday was a lazy day. I was feeling weird so I didn't get out of bed all day. I talked to my Health Coach on Thursday and he suggested that I call my Psychiatrist since I still was not sleeping well. I was able to get in on Friday. He changed my sleeping meds and it's another transition time. I woke up at 3am this morning and was wide awake. Around 5pm it should catch up with me. Last night I was in so much pain. Pain seems to travel and aways goes up. So my head was starting to hurt too.  :(

The Days Are Forgotten

I've been up and feeling ...okay...for the past 2 days. Only to have realized we are already into February. That part is unbelievable. I'm scheduled for the 29th to do the first of two SPG Block. I am definitely having it done at the surgery center. As I picked up M from school yesterday I was talking to this one mom and she said something about her daughter asking why I was sick all month, last month. The days seem to fly by or I feel that I've forgotten them.

M has had a horrible cold the past 4 days, and being a responsible parent I only sent her yesterday. It's not worth having her get run down and even worse since all of the other kids are sick also. I have been taking the Airborne because I do not want to get sick again.

I called the TN Association down in Gainsville, FL yesterday. I wanted to see if they had more information on Trigeminal Neuropathy. There's only one lady that has that information, so they put me one her call list. They said I should get a call back this week sometime. I've looked on the Internet and they just really isn't that much on the subject either. how can that be? There is so much useless stuff on the Internet but nothing a person REALLY needs, or I should say someone who has a very rare condition needs.