Archive | April, 2011

Shooting Electric Pain In my Neck Lymph Nodes!

27 Apr

Update April, 2012 –

I am still having these electric shocks in my jaw, neck and mouth. It is from my late-stage Lyme and coinfections. I am kind of used to it by now but it is somewhat embarrassing at the dinner table with guests. I will say “ouch” and sit there with my mouth fully open waiting for the jolt to go away. Now it is triggered by my first drink or first bite of food. After that the shocks aren’t as bad. When people see me doing this they figure the food is hot but that is not the case. Although I do have a highly-sensitive mouth so any hot or cold food will burn my mouth. I have to eat food that is luke warm. I cannot eat any food just cooked or right out of the freezer.

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Interesting Facts About Me

26 Apr

Before Lyme

Before Lyme I had a pretty exciting life. I have met some famous people and worked some great jobs. Here are some of those stories I would like to share.

Skywalker Ranch (George Lucas) 

I had the pleasure of working at the Skywalker Ranch back when George Lucas was filming and creating Star Wars: Episode One – The Phantom Menace. Skywalker Ranch was huge and they were still adding on at that time. They have their own Fire Department and Ewok Lake out there.

As I drove in to work each day I was carded and thoroughly checked by security. There were droid (robot) shaped video cameras spread throughout the hills and rocks to spy on visitors. I was there to add more broadband since Lucas needed more computers and speed to finish the movie.

All of the windows were covered with foil so I couldn’t see in. The hallways inside the building were filled with all the food and drinks one could want. There was a huge cafeteria, gym and much more but I could not see most of it. They treat their workers right.  I was only a contractor so I had no access to any of it.

On the way home on my final day of work there I saw a bus pass right by me and inside I saw Samuel L. Jackson arriving at the Ranch. It was something I’ll never forget.

Green Day

I grew up in a small town called Rodeo, California. The same Rodeo where Billy Armstrong of Greenday is from. Billy dated my best friends sister back when I was in elementary school. We went to the same school for a while but as we got older he went to a school across the street from mine. The two schools were connected by a tunnel.

One day at school my friends sister asked me nicely if I could hold on to her boyfriends (Billy’s) stuff for him and put it in my locker. It was a bag full of pink pills which now I know was probably Darvocet. At that time I had no idea I was just a kid.Billy gave me a nod and walked through the tunnel back to his school.

Turns out it was locker check day at our school and my friends sister was holding the drugs for Billy in her locker. She gave them to me knowing that my grade didn’t have locker checks. At the end of the school day I handed Billy back his back and he thanked me.

Billy was very talented and popular back then. St a talent show he sang “Home Sweet Home” by Mötley Crüe. He amazed everyone in the auditorium and of course he won.

I am proud in a weird way that I was able to hide drugs for Billy back in the 1980’s. lol

Musicians

I used to work for wherehouse records many years ago. During that time I was invited to exclusive record release parties. I was supposed to meet Mandy Moore, Britney Spears and Charlotte Church but I had to work those days. This was before their first albums were released and before their fame. I always regret not seeing them but at that time I had no idea they would be famous.

I did however have the pleasure of meeting Outkast during their record release party in San Francisco. Long story short, I took pictures with them and I was able to hang out with Big Boi for an hour and drink screwdrivers with him while we chatted. Really cool guys and they were very nice.

At another party I was supposed to meet Diddy, Notorious Big and Lil Kim but they canceled and never showed. Instead I met Sway from MTV. He was really laid-back and we chatted for a few minutes.

At another event I met a lovely singer by the name of Anastacia . I believe she had just beaten cancer at the time. She sign an autograph and told me she had a brother with the same name as mine. Very sweet girl and very pretty. At that same event I saw one of the singers from Color Me Badd.

I also met a lot of up and coming bands and singers back in the 90’s but I can’t remember them all. Most had hit songs on the radio and others flopped.

I’m sure there is a lot more but this is all I can remember at the moment. My memory loss has been bad lately. I am also feeling very nauseous so I hope any of this made sense.

Hanging In There

25 Apr

Past Two Weeks

For the past two weeks I have been in too much pain and too weak to post. I had some usual bad luck like having my blood work mixed up with another patient. Then I had to go to Quest and get a new blood panel that Quest said my insurance would cover but they didn’t. So far $1000 was charged to the credit card.

I had a day where I ate the Doxy and felt like vomiting about an hour later. I started sweating and had an instant migraine so I laid down in my bed in the middle of the day. I had another day where I also had dry heaves and was sweating bad. Not a full on herx but it was something.

I used to have at least 2-3 good days per week in early 2010 but so far in 2011 I haven’t had even 1 good day. By good I mean feeling a little bit of energy, have an appetite, feel like walking around and stuff like that. Now I just get up from bed and walk to my chair. Just that short walk hurts my legs and ankles.

I have watched so much TV that I am watching reruns of reruns. There are those days were it almost feels like I may be near death. I can’t move, talk and my whole body is warm and numb.

My back is killing me right now so I am signing off………..

SSDI Update – Day 1

15 Apr

SSDI Denial Update – Day 1

Today I called Allsup SSDI Representation. They lady I spoke with was very nice and helpful. The call lasted about an hour. They ask for personal information to make sure you qualify. They also want to know that your case is worth representing.

In my case the agent said my case was “very severe” and she questioned why I was denied in the first place. She gave me some stats and said 65% of all SSDI applications are denied the first time.

Allsup said they were more than happy to represent me and feel I have a strong, winning case. If I win they will take 25% of my award (not to exceed $6000). If I lose then they take nothing. I strongly recommend working with a company like Allsup to help you get the money you deserve. They work much faster than an Attorney would.

The process can take anywhere from a month or two and up to a year or two depending on the situation. Court cases can be backlogged and court dates may take years to get. In my case this is appeal number one so no court hearing is necessary. If I am denied again Allsup will continue my case until I have a hearing and fight for me to win in court.

The great part is that they know people with disabilities like Lyme have enough stress and worries to deal with. They ask that all calls or letters from Social Security are forwarded to Allsup and they handle everything. There is no travel needed and we work via email, fax or snail mail. This is helpful since I can’t drive and never leave the house.

I will keep you updated of my progress. Let’s hope I see some income soon so I can pay some medical bills.

SSDI – Denial Letter for My Lyme…

14 Apr

SSDI Letter

* I’m herxing right now so this may not make sense.

I received my first denial letter from Social Security today. I applied back in October of 2010 and just received it today even though I am still being diagnosed and treated for Lyme coinfections. I was very organized and was I my own advocate. I turned in every medical report or paper I had and kept SS informed of every change. It cost me a lot of money just for making copies and paying for medical records.

No where on this pathetic letter does it mention that I have Lyme disease or Hypothyroidism. It’s funny that they left those two conditions out of my determination. The letter in a nutshell states “if you can walk and talk then you can work so find a job”. Seriously? I did put in literally over 360 applications back in 2009 and had one call back. I have a degree and 9 years of upper managerial experience. It’s not like jobs are plentiful anyway even if I were able to work.

They say my brain is healthy so I can get a “less demanding job”. It fails to mention all of the cognitive problems associated with Fibromyalgia and Lyme. The letter fails to mention my dyslexia, short term/ long term memory loss, me falling, me breaking both toes from being dizzy 24/7 and running into walls, me throwing things or can’t hold onto items without dropping them…etc.

The letter states “There is no evidence that show your tremors, dizziness, fatigue and IBS prevent you from working”. What about my spinal stenosis I need surgery for or I can be paralyzed from the neck down? What about Lyme and Fibro which make me confined to my parents house and living in a chair or bed for the past 2 years? It is basically saying “Hi, I sit at a desk and have no idea who you are and the struggles you go through daily but you do not sound sick to me”.

I’m pissed. I had at least 12 medical issues listed on my application and I added more during the process. I am still testing and finding more infections to add on. I cannot believe Lyme was overlooked on my application. Is Lyme not real to them? Take a walk in our shoes government.

My goal now is to hire and attorney and get an approval. I need Medicare and some kind of income. I have had no income since October of 2010 and during that time I paid $525 per month for COBRA benefits. Now I am flat broke and lost my car. I cannot drive anyway. I have a county provided medical insurance but it is horrible and they do not cover anything Lyme related. That means blood tests, stool tests, prescriptions and visits are all out of pocket and I can’t write them off. Right now I pay $1200 per month for my Lyme meds and follow up visits but that will go way up when I get an IV.

I had a good job and I have worked since the age of 16. I paid my taxes and social security and now when I need it they deny me. It’s a slap in the face. I know people who have never worked, chose drugs and were too lazy to do anything so they applied for federal help and they receive free money every month. The people that really need it and deserve it are denied the help. What is wrong with this picture?

Why would I quit a good job with full benefits and a 401k and sit at home inside for 2 years eating 15 pills a day if I was pretending to be sick? Do they consider that? I pass out, vomit, herx, use the restroom all day, chronic pain, have migraines daily and fall sometimes…. if I had a job which employer would put up with that?

I am fighting this so I will keep you informed of my progress. I am calling an attorney in the morning and hope this will be settled soon. I am in the negative and owe my aunt for all of her help. I feel so helpless and my pride is gone. Thank you USA for nothing.

Herxing and Rash

10 Apr

Bad Day

Today was one of those where I could have slept all day but didn’t. I got up early after 5 hours of restless sleep and took my pills and I have been up since. I fell asleep at 6am and woke up at 11am. I tossed and turned all night and had my usual arms, hands and feet falling asleep and numb too many times to count.

The day started off with the usual pain and lack of energy. I normally feel better in the evening but tonight I felt worse. It hit me fast and I started sweating and getting a headache. The headache turned into a migraine within an hour. I felt as though I had a fever and my speech started to slur which happens often. I went to bed and laid down for 30 minutes but it didn’t help.

I also noticed a small pink spot or lump under my eye. It doesn’t itch and is the size of a pea maybe. I also have a small area with a pinkish colored rash that does not itch on my lower body. The weird part is that it is the same spot where I found a tick on me 26 years ago. Hmmm.

Off to take my meds……

Cognitive Problems

5 Apr

Cognitive Problems

I love movies and television shows. I watch my weekly shows such as CSI, NCIS and many others that one has to follow to get the story and find out who the murderer is. I used to follow along and pick up on clues with no problem. I also love movies that can get complex but I would get the story and love it.

Recently I watched ‘Inception”. A few years ago that movie would have blew my mind and I would have loved it. Watching this movie with Lyme… I was lost and just could not follow along. I am having trouble following my weekly shows and it’s almost like I am just staring at the TV. My dad will ask “what did he just say” and my reply is “I have no idea” and my dad says “aren’t you watching the show” to which I reply “yeah but I can’t follow along with their conversation”.

I used to love complexity but now with Lyme I like simplicity. I have books sitting on my dresser waiting for me to read them. I was in the middle of a ton of books before Lyme and I would read an 800 page book in months since I was at work most of the time. Now it takes me months to read a few pages it seems. I find big words hard to process and I find myself reading the same sentences over and over trying to get what I am reading. I like to read more than one book at a time so I have 6 books going right now but I just don’t feel well enough to read them.

I am starting to feel additional pain from a Fibro flare up or Lyme flare coming so this is all I have for now. I can’t believe I wrote this much. I hope it makes sense and I hope you do not mind the misspellings or poor grammar. 🙂