Phantom of the Opera

Phantom of the Opera this music has felt as if it is speaking to me lately. The struggle - at times like yesterday I feel like Phantom. Someone that has been created not by personal choice is now nothing more than terrifying, has great talent and love however will never be able to let the world see those.
Today I feel vulnerable - Christina - beautiful, tragic, vulnerable and fearful my talents will be lost in the night. Desperate for someone to need me and be honest with me.  Just like her I want freedom from this - time to enjoy my life. I have the love of a lifetime - it is metaphorical for different aspects of my life. Any where I WANT to go I want to feel free to go. I feel as if the seizures and health are the phantom holding me in some dark chamber. Keeping my light from shining. I have gained 25+ lbs since I walked in the hospital Aug 5. For the first time in my life I feel FAT. Even harder - I have a publisher interested in including me in more books, maybe even submit to higher distribution publications.
I learned today in psychotherapy - only way I'm going to get through this challenge. If you are dealing with chronic pain, devastating illness - get help! I was resistant. I am stubborn. If I didn't have this outlet, I couldn't sort out the torture, grief, fear and so much more that my brain, heart and soul struggle with each day. Today I learned why despite being surrounded by amazing supportive people I feel alone. I was able to verbalize it, have someone understand and show me that I just need a REAL hug and I must fall into the embrace and accept it. What a feeling! It was there all along, I didn't know how!
Well, time to wrap this up. I need to sleep. Please pray for me tomorrow. I am seeing Dr. Jerome Lint, a movement specialist that responded to my desperate email and got me in immediately. HE is eager to see me. I pray this means something positive, at least a diagnosis.

Hugs to all of my readers. My stats the other day were unreal! I'm not sure if it will continue or if it was right? I hope someone is listening and maybe this is making their struggle a bit easier.

EMOTIONAL AND STRESSFUL

AHHHHHH Ok I feel like I could do that 30 more times today and not even break the surface. The only thing I have ever found that dents this feeling - really - is running. How good a run - maybe five miles or so. Instead my feet and ankles while some better because I was in bed 85% of the day balked strongly at just the thought of taking pictures of items for the Etsy store.
I look at myself in the mirror - just over a month ago I was 30 lbs lighter, I was photographed and published and on my way to my to becoming a pinup model. The same publisher is very interested in me again - ya wow! Its all I can do to drop meds and get used to the new ones. Dieting at 1000 calories a day again sounds well impossible no matter how bad I want it. I know it isn't a priority, I know it really shouldn't matter but it hurts regardless.
I'm promising to be honest here. Wow. It seems easy sometimes - others not so much.
Today we listed our motor home for sale. We talked about it so much and I know it has to be done. The payment, gas, insurance, upkeep, registration. Not exactly realistic in our situation anymore. This is a loss of something physical I feel we worked hard for. Harder part when push comes to shove, is we have had some amazing times as a family in that motor home. I guess I figured we would always have it. Its crazy enough that my "babies" are 18. 17 (in college) and 14 (high school). That always seemed to bring us together no matter what was going on. It is just another symbol of the end.
Oh, and while being honest what about the medical bill collectors. They call, send mail. Bills from doctors, tests, labs, people places I seemingly know nothing about. Somehow we owe them $200 here, $11, the variety equaling thousands and thousands of dollars. Everytime I see one I think - all this $$ (nevermind what insurance has paid) and we have NO clue what's going on.  I'm still a medical mystery.
My entire brain (until tremors or a seizure start) tell me just to go back to work, do whatever they have for me. If the pain is bad suck it up. I can handle anything. My husband has been working from home or on sick leave the better part of 2 months. Back to that I require a babysitter 24/7.

The tension in my house I HATE. I always feel if I was just "normal".  The first reality - my way like MANY of you. out there - deal with this tension by running away to work, travel. I was mastering that technique. Now if I could just think harder, control more it would all be OK - I could go back to what's easy, what's "normal" for me. The reality is it isn't. I'm not in control. God is proving he is in control this time around. I have some amazing friends and family that so gently remind of this. I am trying so hard - all of you. You are also the ones that know this is perhaps my biggest weakness.
You know how you cherish those days when you can wear NOTHING but pajamas or sweats and just watch movies/football? I know I used too. Today was the first really fall day here. Tonight as I laid in a tub of warm water and epsom salts (yes for my aching feet) I realized that when I was able to work, I would have been so excited to wear that new fall dress and shoes this morning. Instead like many days - I never got out of my pj's at all. Now I dream of the opposite. Am I ever happy?

Wonderful Day

As so many of you are aware, I am aware of vintage clothing, music and much more. Through out this experience I have had had so many wonderful people that mean the world to me - encouraging me to do something with my love for pinup, vintage, thrift shopping, garage selling all of it.

I have successfully set up my etsy account. My new online store via etsy is called Stormy Vintage - of course a play on my pinup name. I am hoping that tomorrow I will be able to begin putting pictures in tomorrow and some items can begin selling. I was blessed enough to feel up to a few garage sales on Friday morning with Brett. I found some amazing vintage patterns, some very vintage style fabric, a handbag and some adorable belts.

Today Correen and I got some time in at a local thrift store. I found some wonderful items. My favorite a late 50's/early 60's shift dress with matching neck scarf. Just adorable. Thanks to both mine and my husbands wonderful parents I was able to gather the inventory that I have collected for the past few years. In addition, I was contacted by a previous publisher with interest of me doing more pinup modeling. Don't forget to check out Pinups and Hot Rods Vol. 1. Perhaps I will participate in future publications. I would love too.

I have also added a widget to my blog - It includes links to anything that I refer to on Amazon. If you use this link I get the opportunity to earn a very little kick back for the reference. Being that I'm not working this could really come in handy. In addition, I spend so much time reading and listening to music - I simply decided I would love to share some of what I am learning with you.

Now the health part of my day. The best news since this nightmare began. I'm not sure if I mentioned it a few weeks ago or not. I decided I would be proactive. After hours of internet research I sent emails to every movement specialist I could find with an email address listed. As you can imagine most of them were return to sender as they were no longer any good. I got a few "I'm not taking new patients". This morning I received a phone call from a Dr. Jerome Lint's office. His staff member told me he is VERY interested in the email I sent (included video's of seizures). He wants to see me immediately. I will see him first thing Thursday!!! No we can see you in 3 weeks. I want to thank God and thank ALL of you that have been praying so much. Please pray that it will go as wonderful.

I luckily still have an appointment October 12 with Dr. Mark Lew at USC. He has an amazing reputation. I am starting to feel hopeful that a diagnosis and perhaps some level of understanding will surface soon. I did go 72 hours without a seizure. Unfortunately last night about midnight I woke up to terrible back pain and within minutes I was seizing. I lasted aout the normal 30 minutes. My back has been terribly sore all day. The other odd symptom I am struggling with the past few days - some edema fairly mild, however extremely painful in my feet and ankles. It doesn't seem to improve much when I stay off my feet - painwise. I have found an amazing product that does help Traumeel. I was introduced to it during my 22 days in the hospital. I can't believe how much it helps. I accidently let myself run out. I miss it so much. Really - anyone with pain even just from a workout. This is it! AND it doesn't smell, and it's not a nasty narcotic/opiate with a ton of terrible side effects.

One thing I did notice today that was rough - the old days not only could I drive myself around to the various thrift stores, I could hit all of them. Today I honestly barely made it through one store. I was exhausted, sore and unable to even enjoy my purchases the end of the day. I ended up sleeping for yours afterwards, taking a very LONG bubble bath with Village Naturals Aches and Pains. listening to my favorite music.

Wonderful reset to say the least - gave me the ability get in set up the Etsy Store. Really got my head in place. Its been quite a scattered day, and my post a bit scattered as well. The best part I feel good today emotionally. The pain is there and difficult, I'm shaking awful becasue I chose to use the laptop, but I got to thrift shop, set up my online store (step one) AND I'm blogging.

I hope you don't mind the Amazon widget. I want to share these wonderful things I have found. I have NO money coming in. Maybe it will work. Please let me know. I don't want to be a sell out. One last thing that is just awesome is a book that reflects some of the things the neurologist staff has been working on with me. Alternative methods of healing. I am loving to drink a chunk of ginger in hot water with a bit of honey. My new morning drink that I am really trying to switch to from coffee - just HOT water and lemon. I feel sooo GOOOD when I do this. Its such minor changes folks. You won't believe it. I just love so far how this book talks about it, just the basics in idiot terms :)

OK my LOVES I must try to go to sleep. Please feedback. Hopefully tomorrow will be as wonderful as today. Hugs to you all that keep me, my family going. Today and my joy would and could not have happened without all of you. We are so blessed.

MEDICAL UPDATE 2 0ctober 2011

I have been just awful about blogging. I found myself realizing yesterday that I miss it terribly. I in turn had some real honest thinking to do. If this is something I enjoy so much why have I allowed it to be neglected? I have indeed had a few technical/physical issues. My phone (a DROID2 has been acting up). The slide out qwerty keyboard decided to stop lighting up. I am most comfortable using that method and it is gone. Secondly as I mentioned the tremors - just trying to check my work email with the touch pad mouse - I had lost all patience with the situation. Tonight I'm doing my best to type on the touch screen qwerty. Its much slower for me so far because it isn't my comfort zone yet.  I'm hoping it goes well because I have a lot I would really like to share. Get you caught up with me so that I can get back to daily entries. My reason - its amazingly therapeutic for me.

I am going to start on that topic. Therapeutic blogging ...really how can I find sharing my honest most intimate feelings with the world - more challenging and scarier sharing with those close to me. Strangers have no preconceived ideas of who or what I am. I don't have any real emotional connection IF I happened to get feedback. Family, friends, coworkers, all see me and everything I'm experiencing. Some days as you have seen that isn't so pretty, nice, kind, or careful. I guess in the end I figure if you don't want to see/hear it - you don't waste your time.

On the medical side of things - few changes. Most important and exciting I am finally off Zoloft (sertaline) after almost 10 years. Couple things before I go into "getting off". I wasn't proud that I took an antidepressant. I don't think anyone is. The past few years I had come to the conclusion based on various physicians (not psychiatric) that I truly struggled with anxiety and some depression. Back when I was prescribed I even remember thinking (as the internist prescribed it) during a hospitalization for a severe kidney infection. Looking back and knowing what I know now, I was in terrible pain and was given no pain meds because "my kidneys couldn't filter them", sounds like a reason to cry a bit seem a bit anxious... I recall going to see a psychologist for some time after and being told I was fine just recovering from a terrible illness.

Since then I have attempted to stop it with the assistance of various physicians. Every time I got to 50 mg. I would feel awful. EVERY TIME I was told I didn't feel good because I was having anxiety. One positive aspect to the idiot neurologist who tried to diagnose everything psychogenic - I know without a shadow of a doubt I have nothing psychological (I know! LOL) 

Now facing life altering medical issues - undiagnosed myoclonus, tardive, tremors - all side effects of the medication I have been taking forever poisoning my body for conditions I don't have - conditions that were because of doctors simply didn't want to say I don't know.

I have been out of the hospital just over 4 weeks. I have weaned off straight OxyContin, 40mg a day (to treat pain of the seizures). Ativan 1 mg 4x per day (plus daily 1-3 2 mg IV or IM injections to stop the seizures. I also left taking 50 mg Zoloft (down from 150mg). It took a couple weeks to get ofc the controlled substances. Didn't even finish scripts. I have gotten off narcotics many times the past 2 yrs. Its physical effects can be ugh......but wean and your good.

I am saying all this because the Zoloft is a nightmare. I am dizzy, bring zaps (yes feels constantly like a lightening strikes) I havent had 12.5 mg since last Friday. The diarrhea, nausea, joint pain. All hasn't eased even slightly.  I start researching and it isn't uncommon to last a month plus! The more I experience this, the more I believe these medications aren't monitored properly. Yes they serve an amazing purpose when needed. There needs to be more awareness of their dangers but they also need to mo irises my mental health physicians for proper use. For many people around the world they have proven az dangerous as narcotics.

PLEASE be cautious. If you have questions about my experience please free to ask me, more importantly your doctor.

My best news is Dr. Mark Lew, a movement disorder specialist agreed to see me 12 Oct. Much better than December! News hopefully on the horizon.

I must end this and sleep! But I must say that I have been so reminded how blessed we are with the most amazing family and TRUE friends. Wednesday was in terribly hard day. The scariest being unable to speak during a seizure and for 2 hours after. I was close to loosing faith, and God has reminded me 100 fold how blessed I am. Tomorrow I hope to explain.

Need to Edit Blog

I am have been remiss in editing this and I apologize. I often submit via an email written on my phone. I have difficulty often with Parkinson type tremors in my hands the past maybe 2 weeks. This leaves typing on the computer quite frustrating for me. I know things are in terribly disturbing disarray. I am learning the patterns of the tremors. I am also realizing it seems to becoming less and less. Please bear with my chaos a bit longer.

Pause in Clogging - Bit od

Haven't blogged in far too long. I'm sorry to those that truly are interested and are concerned about me. I had some feedback that quite honestly left me questioning if I wanted to be sharing such personal and emotional information with the world. Of course I considered this at length prior to doing it, but re-evaluation was important. Decision, this is more therapeutic and enjoyable for me than I willing to give up.

Most of my blogs are far from amazing writing. I often times will just write what is on my mind - blindly share what I am experiencing. At times this ends in less than stellar, smooth easy to understand reading. I have always tried to go back and edit them for spelling/grammar/clarity as I feel up to it. For the same reasons I'm not working, doing that it's easier said than done. Dr appts (rarely less than 3 hour drive) constantly changing hard core meds that I'm on - I'm sorry folks its part of my reality right now.

I had many compliments about what I wrote in honor of my mom on her birthday. First of all thank you, it meant a LOT and was very emotional for me to not just write but share with her AND the world. I don't consider it "just a blog" I spent a lot of time, many days, hours working on it. How the words flowed, exactly what I said and how I said it were carefully choreographed. I had a lot that needed to be said for myself. However, if you want to see me, my experiences as they happen good, bad and ugly (my purpose of blogging). Some times I haven't slept for 24 hrs, other times I can barely keep my eyes open despite the 20 hrs of sleep I've had. Again not to mention what medications I'm on.

Another point I want to talk about that has been a major topic of emotional change, personal investigation. My drive for "success" has been a topic of discussion more than once. Someone even stated that basically you don't strive for success - that is something that will be determined by others ultimately in your obituary. Having written obituaries for a few years in my early 20s at the local newspaper I couldn't agree more with this statement. I also recognize that success is measured by each of us VERY differently. The areas of success are equally diverse. Would a different word have been better suited? Possibly....but for now I hope my readers understood my meaning.

Now I question with all of this. Should I have go back and edit all of this, attempt to improve my quality from here out? My first rule for ME is this is my experience, my blog, my personal emotions. None of its changing for someone else this time. That would make no sense now would it?  I go back and re-read past postings. If I choose I clean it up. One of the very harsh realities for me and you if your watching, my writing demonstrates for me (as clearly as a video recording) my bad days whether its pain, too many mess in me, or just plain emotional. Some blobs just drop off and end....I started having an episode, or the meds were just strong and I fell as

This experience isn't cotton candy.....mmmm THAT sounds good LOL. Its arguably the most challenging, life altering, emotional ---- I have ever experienced. There are pretty days, basic days and downright ugly.

So, please keep the comments coming. Some have been intellectually and philosophically challenging for me. I'm not ignoring them. I feel blessed just by the thought that was put into the messages. Please understand they deserve equal response which right now I simply can't provide an answer I'm happy with.

Visitors - My house is open! I'm missing everyone terrible. Please come by! Usually I am home. Even emails. I love it ALL!!

Time to Stop Screaming!

My mom celebrated her birthday today. She started my day responding to my Happy Birthday wishes with the comment "I'm just happy to be alive". I couldn't agree more! I can't begin to imagine my life without her.

Being her birthday I spent time thinking about my maternal grandmothers comment Saturday - you must stop fighting with your mother. I know why I couldn't just "stop", I never "started". I am very close to my parents. I think the world of my Mom.

My mom sacrificed the first 10+ years of my life being a stay at home mom. She even home-schooled me for a year, my sisters longer. She worked very hard to feed us extremely healthy food, do rotation diets for my food allergies. She did it not only for myself and my sisters but also opened our home as a day care provider. All while going to school herself to get her degree. So many things I can't even begin to imagine how she had the time, strength or power.

I was never an easy child. Arguably, I have fought with her since birth. I was THAT baby. I screamed non-stop at least my first year and about half the time until I was, oh say 10 and maybe 1/3 of the time until I moved out. God bless her. Now that I've raised two daughters, she had her work cut out for her when it came to me. She put me in anger management, she tried to teach me how to be calmer about life, relax, not be so stubborn in everyway she could.

As I've mentioned before I wanted to be the BEST as far back as I can remember. I also loved pleasing my parents. Looking at it now, I was quite the paradox, in one hand I made their life a living hell with my attitude and on the other I wanted to be perfect in school, activities, etc. When she was proud - it just further confirmed in my mind that I was succeeding!

I planned for success early- I would graduate (a year early) with stellar grades, move on and be accepted to a prestigious university. Instead one morning in April 1993, just 6 or 7 weeks before graduation I told her that I was pregnant. I broke her heart. Now as a parent I know she was scared for me. My response - be the BEST - take control of what I did and prove to myself, my mom (and everyone) I could do it, I would do it. I would succeed at this!

In doing so I now see I compounded the pain, her loss, her fears,  I thought I was helping her - she didn't need to raise our baby, we did. This time was so difficult for our relationship, but being 16/17 I failed to see all my options. I wasn't fighting with her - I'm sure it looked that way now - I was simply determined to succeed the best way I knew how for me, my new family.

For years, I consciously was showing her I was a success despite being a teen mom. I worked hard to be the best mom (accepting I could never be a mom like she had been). I unconsiously worked jobs that would add to it, make her proud. Usually, jobs that I enjoyed somewhat, or enjoyed portions of but usually I found difficult. Sometimes it was easy because I was promoting something that I truly believed in, but in the end it ate me alive. Social work, patient care, I don't have the strength she has in those areas.

Have I stopped yelling and screaming yet? Physically maybe (my kids may disagree at times) but I guess I haven't. I have been silently screaming saying here I am, I'm successful, I'm doing great. Unfortunately, being my worst critic. I created this picture of who and what I will be and exactly how I will do it. I've foolishly thought that meant she should just LOVE everything I LOVE and envisioned as if it mattered.

She and I are different in more ways than I can list. She is a Virgo, I'm a Gemini... We also are very much the same. Differences are what make us all so wonderful. They also are what makes it so difficult for us to understand each other. She may not love the fact that I keep tattooing my body, my dream is to be a pin-up girl, or maybe even why I was so passionate about my last position at work. I haven't been fighting with my Mom this whole time, I've just been yelling I'm successful, I did it, I'm a good mom, daughter - forgetting she doesn't have to share my passions and desires to love me and be proud of my success. Foolishly, in my becoming comfortable with me, I left this piece out.

In the end, I'm proud of my Mom and the success she has had. I personally think in her career she is hands down the best! If I find just a fraction of the success she has as a wife, mother and in her career - my life will be complete. 

One trait we share is neither of us is very good at stopping and resting when we should. Its gotten both of us into situations where God has to smack us upside the head.

Mom, Nana - I am working on this and hear God's message loud and clear. I'm not fighting - I guess I was just screaming still. Its time for silence (real silence). I love you both.

"Dream" Job - Chance of a Lifetime or Proving Ground

Going back I have worked very hard to do whatever job was placed in front of me. I have always done everything I could to be the BEST. I always had something to prove. I honestly can't even begin to guess when this started or why. I remember vaguely a third grade teacher - I had her for 6 months (maybe) and in the middle of that I was out probably 6 weeks+ due to appendicitis and complications from it. I started mid-year from another school and I was behind (in my mind). They were far into cursive writing - it may have even been required and my last school we had barely begun learning. It was instant failure in my mind. Obviously, still remember it to this day.
The older I got - I realized quickly that being ahead of the curve not behind it was my choice. In school I remember almost as a rule doing homework as soon as it was assigned - preferably in class that same day. I hated even the feeling of it being there later, yet on occasion I would get overwhelmed by something and procrastinate - which devastated me. Ever since I began working it was SUCCEED - having been a teen mom I found it impossible to give 100% to my new family, 100% to school and 100% to work. I cut out school, I could put an extra 25% into work and move up pretty damn well. I was happy with it, we were able to pay our own bills (sign in my book of success), and the recognition I often received wasn't bad either.
When my last position became a reality it was the ultimate challenge for me. I had been an office manager (polite term for secretary based on my duties) for a few years now. I liked the job okay but it wasn't something I saw myself doing ever much less a few years. I felt like dress the part, smile, be happy all the time, and do the tasks means everyone is happy. Even this job I worked when the bosses worked, brought coffee, goodies took the extra steps to be the BEST.
The position I was accepted for and worked for the past almost five years - was so much more. I was challenged beyond belief. Even more I had a LOT of people that couldn't believe that someone (ME) could go from being a secretary to doing technical work - especially without a degree! What better situation for me - not only was I extremely passionate about what I would be doing, I had to prove to everyone that not only could I do the job - I would be amazing. I should note here that I faced disgusting, unacceptable behavior from an unreal number of "professionals" trying to embarrass, scare, or maybe just make life very uncomfortable so I would give up, walk away. They didn't realize I am way to stubborn for that (and I guess I didn't realize a persons body can only do, take and succeed to a certain breaking point)
I literally put everything I had into it. I travelled non-stop, I worked at work, I brought work home at night, weekends. I loved what I was doing because of what it was. I was lost in an amazing job that first and foremost I loved. Next the hard work started paying off and I began to be noticed. Compliments, awards just feeding into me once again being the BEST. Let's make a point though that the more I succeeded the more it seemed those same people who wished me to fail in the beginning were waiting in the wings. I pushed harder and harder - intent on a glorious review and goals of advancement. As I did it I was succeeding, I was the BEST....at work. I was married to work, and projects somehow became babies to coddle.
The same day that performance cycle ended - my body crashed. That was September 30, 2009. Since then work has been something I crave and despise. The passion for the work has never changed, I want so bad to return to what I enjoyed so much. At the same time I despise the hatred and judgement that lurked behind every corner. People that often times had no clue what my job title or job description were yet hated to see me succeed.
I haven't been able to work much since September '09. I worked from home as much as my worsening/changing medical condition allowed, and I got a couple weeks in the office here and there. I found out Friday that effective two years from that date in 2009, my "dream career" is no longer. I still have a job, if and when I am able to return I will find a new position. Given today's economy, I am nothing but thankful.
Listening to my sister, my husband, friends - everyone has said it is God taking care of me in a very difficult situation. I've had to grieve - I've cried a lot. I was literally heart broken that it was gone.
Writing this I am heart broken but for a different reason than when I started. I got so caught up in the passion, the goals, the challenge, and being the "BEST" that I allowed myself to represent my "WORST" qualities. For one I allowed people that mean NOTHING to me, that only wanted to see me fail determine my course of action. I nearly lost not only myself but the most amazing husband - who despite me held on even when I thought otherwise. In doing so I forgot who I was and who is truly important in my life - ME, my husband, my kids, my family, friends and my country. That's who I succeed for....that's who deserves my BEST and never again can I sacrifice ME to accomplish that....
....a lesson that I hear loud and clear but I'm not yet sure how to do it. Time, prayer, family, friends I'm sure will get me there as they have gotten me to here.

Acceptance and LAUGHTER

In retrospect last night I realized that a big part of my challenge the past few days has been withdrawals. I saw my neurologist on Friday and he made some very major changes to medications with pretty serious withdrawal effects. Add to that - I was allergic to the new pain patch he prescribed - a opiate analgesic. To say the least all of this lead to a terrible combination of symptoms. I think everyone who reads this saw a bit of the mood effects. I say a bit because the tears that fell and the screaming I did at moments really wasn't accurately displayed even in what was a few very emotional posts.
In addition to all my emotions. I have had the I'm coming out of my skin, my skin is crawling, shaking (not my "abnormal" shaking), vomiting and diarrhea. The new meds brought unreal dizziness, vertigo, something. The patch pain med - woke me up early this afternoon feeling like it was literally burning a HOLE through my skin. The left side of my neck, ear was almost that itchy. I called the pharmacist - yes "Take it OFF now". Allergic reaction.....that's right! Does it ever END!
My afternoon was brightened with visitors. One visitor being my very sweet niece that's about 20 months. She and I shared Matzo ball soup (her new favorite baw soup). Hahaha. She is quite a dancer so while the grown ups were talking - I turned on Royal Wedding. She was in LOVE with Fred Astaire I think :) We just loved watching her enjoy the movie, the dancing.
For now visitors mean Brett can leave the house. It is not recommended or safe for me to be left alone for the time being.Brett didn't get "free time" by any means. He took one of the girls to a long overdue eye appointment and get my son picked up at school. They came brought ice cream home - Thrifty's my favorite Chocolate Malted Crunch and Mint Chip AND cones. Yay!
Tonight my sister came over - major heart to heart. Its so hard for me to accept the new realities I'm dealing with. Acceptance is still a challenge. I would love if someone would share how to come to acceptance. I'd really appreciate it commented here - I'm positive I'm not the only one that needs to learn acceptance in their life - whether now or when someone like me Googles and finds this blog. If it is too personal - I understand.
My sister (for those who don't know we are polar opposites) hence she is a major reality check for me during things like this. She pointed out its time to stop "Live Like You Are Dying". I've always been a type A personality. I guess I like to pretend I'm not but as she pointed out - apparently most people don't chose their child's name at 9 yrs old....she listed a myriad of other things that were all too true. Along with that I have this issue - how can I make everyone happy.
When our friend "Miah" passed away from Wagner's Granulomatosis in January 2007 - I thought I changed a lot. I took a risk at work and took a new position that came with many nay-sayers. It was also a major change from anything I had ever done. We'll have a whole blog on that. I got the tattoo I always dreamed about. I've gotten more. I have smoked hookah, and recently found I enjoy cigars here and there (yes THIS is "crazy" for me). I've actually hidden this from people so they don't think less of me. I'm 35 years old!!! OK, something else I need to change.
One last major change I'll mention for here is doing Pin-up. It was a major hurdle for me to say hey I want to do this AND I'm going too. I felt like I had to again really justify my decision. This again, NO MORE. I am so proud of the work I've done with modeling. Its the best thing I have ever done for myself. I don't plan to change that anytime soon. I am blessed enough that I do have Brett and also some amazing friends that lately have reminded me of this.
OK, enough for tonight. I'm going to focus on acceptance and how blessed I am for wonderful family all of us different which is what makes us fit together and some amazing friends that make getting though each day, sometimes minute easier to get through. And I'd like to report I laughed so hard tonight with Joe, Susan, Richard and Brett my stomach hurts. Amazing feeling. Love all of YOU!!!

Acceptance

I have taken up the inclusion of acupuncture therapy and yoga therapy since I left the hospital. Acupuncture brought up something difficult. I don't truly love myself right now. I thought well no SHIT. Am I supposed to lay here and be thankful to my body further LOVE it that I can't do anything that I believed to love just a few months ago? I have been forced to give up running - it may have been a passion for only a year or so - but I loved it. I loved who I was while I was running, I loved how I felt for the hours after it. The activities related to Rockabilly, Pin-up, all of it - can't make plans to go to anything because who knows what will happen  between now and then. Our last planned show I was just getting out of the hospital so guess that one isn't happening. The therapist in her work told me I need to accept myself as I am now. Truly accept it. She further assigned that I call my Grandmother - that I remember having a real conversation with maybe as a child. We have spoken rarely since.

I did as assigned. The next morning at 7 a.m. I called her. I was honest why I was calling her. She told me that it is time I stop trying to impress anyone else - only myself. I've spent my entire life trying to be a protectionist. I've tried to have the best grades, the best job, the best performance. I've even tried with all my heart and soul to apply that brilliance to raising my kids. Guess what you can't be the best mom. They are people that makes them a variable. Nothing I ever do is always going to be right. In fact at the older ages, maybe being a good mom is going to mean being a terrible mom.  My grandmother told me it's time to stop fighting with my own Mom about everything. You know what I realized - I don't even know what that means or how to do it. I asked and she wisely told me I will figure it out.

I received many other thoughts from her. I realize now I should have written it down. Those two items however are enough right now. I don't even know what to do with them. Further taken into thought is that I MUST learn how to accept this me, the current me. I'm no longer independent, I'm no longer the strong alone person I always thought I was. I am quite the opposite in fact. Don't want to hear any of it. I don't want to hear that the job I loved for years isn't an option to return to - it no longer exists. In my mind - if I had just been there (not incapable) I could have solved it. I would have saved what I loved as a career. If I wasn't sick my kids and I would be closer and I wouldn't feel like there is a wedge bigger every day. I would be myself not some warped pain medication intolerable version. If I wasn't so sick my house would be clean (especially if I was home a small fraction of what I am) instead I am doing amazing if I start a new load of laundry. I would be able to be a wife, to my husband in all ways - an equal. Instead, I depend on him for everything. It seems to increase every single day. Now I need a babysitter 24/7 in case I have a seizure. Not only do I have "NOTHING WRONG WITH ME THEY CAN FIND". There are no words to provide a diagnosis.  I'm just supposed to ACCEPT all of this? Really?

"Support"

Whats I struggle with even more with those people that run away from the problem - how many times did they need help, how many times was their road rocky and guess who they turned to for help. sometimes that help I was minimally affected by. Nothing more than an extra few minutes at work,  maybe training them a skill they didn't have that I could share and make their road a little smoother. Maybe it was something on the opposite side of the spectrum where i changed my entire life around. i have these kinds of friends, without asking they are there, they know what is needed. These people are amazing but I am reminded that they are few and  far  between. They aren't scared, they aren't blinded by their own selfishness their own fears. I choose to think that they aren't simply so shallow that they are the only one permitted to need. In the end, does it really matter? Probably not. The pain is just the same.

Angry and Alone

I am ANGRY everything I know and loved has been taken from me. I am sad because I am very alone. Unless through this they don't want to understand. They really don't want to hear about it either. When it comes to reality no one knows or much cares to understand to see that others in our lives suffer,or struggle. Its much easier  as a friend, a co-worker, a family member to just ignore it, ignore the person. Walk away and ignore the struggle. We all want to live in a world where things come wrapped in  a little blue box with a white ribbon. If what you hear is not that then what? worse even its something that you don't understand, Sometimes it brings up your own not so favorite life moments. What's easier than to just ignore it. I wonder how many of you realize i want nothing more than to ignore all of it. I have even tried. Unlike the option you live with i don't have have such luxury. The times I have tried to hard to just runaway for a few minute/hours - its right there wrapping around my leg like a rattlesnake reminding me don't bother I will only strike again.

ER last night Neurologist today!

The headline says it all. My pain yesterday was absolutely off the charts. Nothing was helping, as earlier in the week - the Pain Center was useless, they can't return phone calls, the admin staff or nurse goes against everything the doctor has said. And before you ask...yes they know. She kindly informed them in my presence that because I live so far away, my appointments must be scheduled around the other appointments I have since riding in the car exasperates my pain and symptoms. No, I didn't the the admin bimbo that is either combing her hair or putting on lip gloss would retain anything however I was holding out hope. Its frustrating as all hell. The doctor is always so sorry, it will not happen again. Leaves me wondering - I'm not a drug seeker. I legitimately have a serious (undiagnosed) pain condition. When I signed up for pain management I agreed would only get pain meds from them. So far we all see the issue.... oh and I neglected to point out also guess who never was found for scrips for yes PAIN MANAGEMENT when I was discharged from the hospital. So needless to say I've had some pain MANAGEMENT issues this week.
OK so after episode #1 and my ER visit Tuesday I have been miserable. I can't even begin to put into words how one of these hurts. Tuesday stupid me didn't think get pain meds I was just delighted hell had stopped and just left. Wednesday and Thursday I wanted to die.....leading to an "episode" last night starting at a horribly high level which made it so difficult to hold myself together.
They tried something different - administering the meds to stop it. They did intramuscular vs IV. It  worked 2x as fast. Gave me some pain meds and home we went. Off to the doctor in LA - sleep may be an option.
More later about the dr appt.

Video of Episode - WARNING it can be upsetting

Posting this video has been very difficult. I am so embarrassed, humiliated, scared  the words for it go on and on. Tuesday night I had another episode and it was a bad one. I was horrified that my daughter had to see her Mom that way; Never mind she is almost 18. To me, it is something I am terrified of, I always have been. I do not want to scare my kids or anyone else for that matter.

It's interesting i hadn't really taken the option to view the videos  until tonight. My first feeling honestly is "that doesn't really look like a big deal." Why is this such a concern? My thoughts immediately returned to how horrible it is to be that person in that position. Feeling like every minute is at least an hour. Playing games within my mind thinking I can of course make it stop. Right? We always are in control of our body's movements. Why is it when I tell my leg, arm, even hand to be still it doesn't listen. If anything it almost feels like if I focus on one body part to make it STOP - it gets worse.

Then there is the pain that accompanies the even itself. The realization that our bodies aren't supposed to move that way, they aren't built to move in that direction that many times, Sometimes one of those already painful movements will decide to be tonic - locking it in the most painful position possible. Then my pattern is to shake the leg/hip that already hurts unreal - as fast as it possibly can go. Faster than I honestly until a month ago was clueless the body could really move.

I am exhausted and I don't know that I can blog much more. I'm going to try to finish watching the football game and my Fantasy football before i go to sleep. I see the neurologist tomorrow so 1. Praying I get through the night without a trip to the ER, 2. Praying for an effective visit.

Asfor dinner tonight - thank you Matt and Windi  for dinner tonight. Taco Salad is always a big hit. The chocolate macadamias from Hawaii were the perfect addition. Others that brought dinner please now it means just as much - if not more if I wasn't up to blogging at the time.

God Bless Everyone and again please share this in hopes we get some sort of medical insight.

Did the same thing in the hospital

My left hip is twisted today. Woke up like this.

Opportunities to Model as a Pin-up NOW?

I've mentioned my dream of being a pin-up a few times. I think there are a number of people that are close to me that are still completely shocked by this hidden secret I had. Some perhaps not that they knew but aren't surprised. I'm sure there are even some that are pretty sure it has something to do with the drugs either that or I've completely lost my mind. Either way - my reality is I always was in love with it. When I modeled a few years back for a gift for Brett - despite being much heavier than I wanted, it felt wonderful. It was the artistic part of me I had always looked for. I knew then I was in love - I had no clue how to do it, how would it be accepted, was I prepared for those challenges, did I have the motivation to get thin. What would Brett think really? I had to get my arms and mind around it before I could say much less do anything about it again.

We had started talking it a lot prior to Sep 09. I figured I was working out like crazy and as soon as my body was where I envisioned it being - we would get started. The best part was I was just about there. Knock out the 5k and we'll start looking at it seriously. Best part with Brett and I both into old hot rods, we had a hobby/common interest that we had struggled with for a while.

Multiple stomach surgeries and pain meds that drive up my appetite (it's my excuse) oh and a month of steroids somewhere in there for my asthma - I puffed up like the stay puff marshmallow man. The stomach surgeries left the worst swelling for months! Finally I decided that I couldn't exercise but I could loose weight and I got back down to the same place I was before surgery. :) My clothes fit again and I had really started getting into vintage clothes shopping.

On 3 Apr, after having randomly been asked to model for a few cars at the show the day before - I got the nerve and asked Joe to do some shots of me with Brett's car. First shoot - gotta start somewhere. It was wonderful. The posing hurt like HELL sometimes, but I needed this emotionally. I had a blast. Joe seemed to enjoy the experience of a new type of photography and Brett was actively involved as artistic director. I think we all enjoyed the experience. It felt good mentally to look at photos of myself and think I'm healthy. I didn't have to think like when I worked, I didn't feel foggy and stupid like I did daily when I did my best to work. We took something like 500 pictures that day. We were both amateurs and we played it up. Best day I had in over a year. I felt human, I felt beautiful, I didn't feel like a blown up sick disabled person.

Another surgery, a few things here and there - like falling 11 days after surgery in the Albertsons parking lot (for unknown reason) and bursting open an incision that was six inches deep, and 4 inches wide. I spent the next few months packing it so it could heal from the inside out.

Just as it was about healed I got a response to my online pin-up portfolio at Pinup Lifestyle. Shannon Toy was offering a special deal in Big Bear in a few weeks. She had worked in the business for quite a few years. She saw potential in my shots, poses. facial expressions, body language. I was leery at first. One I was barely and I mean barely healing from this giant hole in my stomach - a hole that while mostly healed had left a scar you can only imagine - visible easily through clothes and especially any bathing suit or boudoir shots. Also. who was this photographer. I'm new. Lets face it I'm pretty low on funds considering how little I've been able to work, the medical bills (another topic to blog). I knew enough that if she was what she was representing - I wouldn't be able to afford it. And then there was my body - was it going to cooperate with poses?

After talking to her, praying, talking to Brett - I committed to it. We went up to Big Bear the Saturday after I saw the doctor to declare the wound was officially healed, however may need plastic surgery. It was a surreal experience. Luckily it was very relaxed. She was on vacation, visiting family and making do with the guest bedroom for hair, make up and wardrobe. The poses were up to me, and we'd work around my abilities. I gave her all the control and said teach me what you know. When I walked out for the first shot - with an awesome old rat rod firetruck and a rat rod - same type of car as Bretts hot rod. We did five outfits, hotrods, motorcycle. kitchen and boudoir.  I didn't expect anyone to watch us doing the photos, I realized when I walked out and there was an audience. This illness has taught me a very valuable tool that I used right here - just GO WITH IT. It was amazing. Everyone was so complimentary, helpful, I felt like we were with friends and family vs a group of folks we had just met that were offering their home and cars as my sets. The physical pain following this day was unreal - I can't begin to tell you how my body punished me. Mentally I was proud. Is my body model perfect nope,  did I laugh and enjoy myself yes, and I did something I always dreamed of.

I heard people question if I can go do a photoshoot why can't she go to work? I heard a few other not so "nice" comments or judgemental statements. I don't feel after all I've been through that I owe anyone justification. However, I will say modeling for me meant shutting off the part of my brain that seems to NOT work so often when it comes to my career. I didn't have to do anything but follow directions, smile, suck it in, lean left, head right. Not that modeling is "easy" either - it was different and different I needed. Another point, I'm sure if my doctor knew what I was doing she probably would have written the same letter she wrote to HR for my career. I did this for mental health above everything else. Anyone who has been down for at that point over a year and a half - going to the grocery store was a major feat. I'm sure they would understand. If no one understands, I am still wonderful with it.

The blessings of this haven't stopped. Mind you the Big Bear session was wonderful, however it was my first professional and I saw it as an emotional experience. I loved the photos and I signed all the releases, etc. I never thought twice. My goal was to watch my diet, hopefully begin exercising in time and have a well known photograph me. I figured that would really be the first time I would truly have an opportunity to be published and even then - down the road. While I was in the hospital, Shannon Toy photography notified me that I have been selected to appear in a coffee table type book of Pinups and HotRods.

I have to be honest I was so sick and so overwhelmed I don't know if I didn't believe it, thought it was just a dream or what. It's a blur that just faded into the nightmare I was living. After being home a few days I got a message from my friend and co-worker (and more of a mentor than she may ever know) - she had just gotten the book....Wait the book....the Pinups and HotRods book that I am in. I immediately got onto Amazon and ordered a copy. It should be here today. I know from Marsha I am on THREE pages. I guess I need to see it to believe it. At that point, I'm not sure anyone will understand what it means to me. Not only is a dream come true, the timing offers a message I can't even put into words. Tears roll down my face just realizing that despite the fact that it's 2 a.m. and I can't sleep because it hurts to much to lay down - mentally I am on a cloud with no pain just pure joy.

During WWII Pinups signified so many different things. Some argue they signified sex - they were no different than porn. To others it was a symbol of home, of love, hope, freedom and power. Me being a pinup right now signifies all of these things. Its a reminder that despite all of the things I have been through and the pain, I am blessed with a husband who constantly tells me that I am the most beautiful and sexiest woman alive (always when I feel the least), when I put on the makeup,do my hair, wear the clothes and shoes - all the extravagance it is me sending a message first to myself that I am still me NO one can take that away, just look at me. Secondly I feel like a woman, not an old boring mom, not a sick person the beautiful sexy woman I - ME feel and see inside.

I am fighting a war myself right now and to me the symbols of home, love, hope, freedom and power are there for me. Just getting myself made up some days gives me all of these things - even if no one sees me. It's powerful. If you are interested in purchasing my book it is available at Amazon via the following link: http://www.amazon.com/Pin-Ups-Hotrods-Vol-1/dp/1936882272/ref=sr_1_1?s=books&ie=UTF8&qid=1315473264&sr=1-1

Dopamax and well I lost track for the rest.

Work had always been my haven. In my heart is an undying passion for what I do, the reasons for it and the effect that it can have. I work in a male dominated world. I have always found this challenging and simply an added bonus that I had to work that much harder to prove that I was as capable if not more than some that I came in contact with. My biggest challenge has always been and will continue to be not that that directly are affected, or than work with me face to face - its these narrow minded fools that don't know me and make a snap judgement of my intelligence and abilities somehow based on my gender, age, clothing. I've put more thought into this area of my life and why I would be persecuted than I am embarrassed to admit. I know that all that matters are those who are affected by my work directly, however I also don't handle road blocks because of ignorance well at all.

Being out of work for so long has brought some interesting time for thought and reflection on this issue. I am very blessed to have mentors, Dennis, Terry, Len (who passed away about 18 months ago), Marsha and many others. Without these people, I don't know how I would have gotten through some times. They each individually taught me valuable lessons either directly or indirectly that will effect me forever. Not everyone is lucky enough to have this kind of person in their life. I also have others like Rod and Terry, a very special uncle Richard, Daisy, Karen - all people that have been so successful in their own lives and careers and somehow have directly or indirectly influenced  me more than they will ever know.The list of personal friends here is to long to list (and for some reason when I try to edit it make it all work it deletes other people)....quite fitting actually. I'll get back to this.

I went out with my review for the year (ending the day this began) with the best review of my work performance I could have ever dreamed of. I remember now hearing it and felt like it was a dream, I literally was getting just where I wanted to go with hard work, long hours - it was paying off just as I dreamed about. At the time I told anyone and everyone I had the BEST career I could imagine. Note I didn't say job - it was so much more than that!!!

Going back things changed in the office environment, people, staff changed. Time continues to move without me. I've had the celebratory "I'm back" days --- yes days. I have barely made it through a few full days here and there in the office. I have been given permission to work from home - allowing me to work around and deal with the pain issues. One thing has been a constant with any work since that day - I feel like I turned into a complete and total fucking IDIOT. A job that I could do in my sleep, I look as if someone is playing a joke on me and has removed half my brain without knowledge. I have tried everything - work with pain meds so the pain isn't a distraction, work without so pain meds don't make me feel flighty, work at odd hours like the middle of the night when my brain thinks it needs to be awake without reason. I've tried it sitting, laying down, standing, and every position in between. Maybe that would help something to be easier. Usually my bright idea would work for a day or two, some days nothing would work, other days I thought WOW here we go, WATCH OUT I'M BACK.

You guessed it nothing stuck - we won't go into the book of meds that specialists have tried in an attempt to make me feel some semblance of "normal" or perhaps "functional" is a better word for it. I made a comment a few months ago about this ridiculous ongoing issue to my new "pain specialist". She said matter of fact it's the topomax. That's why most people call it dopomax.  Even better news we didn't think it was working. We very slowly weaned off of it. Interesting thing to mention here....I have learned the "not addictive" drugs are worse to get off than the "addictive" ones for me. If your body depends on it to actually function i.e. topamax, pristiq, neurotin. Watch out. I can wean off the narcs - there is a set schedule, the side effects are pretty much guaranteed. In my mind MUCH easier.

So  I officially weaned off this topomax after a five week effort. My last dose was Monday Aug 1. Silly me thought that would get me back working. Look at me here. That effort back fired. I also had injections that week into my L5/S1 and SI joint. Goal being numb the pain. I had two glorious days - no pelvic pain (injection site pain, but NOT pelvic). Then well.....

So along with the fact that I can't focus or follow anything (if this blog isn't evidence of that I don't know what is).... I wanted to mention dopamax not write a book.... Ugh Next one will be Pinup.....

Renee and Tia brought an amazing dinner tonight. And....their sinfully famous fudge

We have been so blessed by meals every night. I want to thank the Hertz's, The Dickey's - have brought so many amazing meals, Jaimie and Nick. I'll try to do better. This is such a blessing.

Resting with Payton After 7 Sept Episode

Secrets and Dreams

I'm so determined to keep doing this blog yet it keeps not happening. I am home. I was released from the hospital on 1 September. I have so many negative feelings wrapped around the way I was treated at the hospital. The nurses were wonderful. The admitting doctor was was heartless. Dealing with something like this is more emotional than I know how to put into words even yet. Its something I need to figure out a way to understand. I am not sure if I've said it before, but seizures have always been my fear.

Each day I attempt to understand what is going on and why it happening. I have a condition that no doctors can figure out. I have a condition that tortures my body - each time an episode occurs I become a prisoner in my own body. I control nothing. My body moves as it chooses beating myself up to the point that I feel like a baseball bat. No one seems to understand the pain that's involved. Doctors worry about the weird part of how I shake and what my physical symptoms look like. No one seems to see or think about the results of what they have just witnessed.

I had my first "mystery" seizure in a week. It started about 0015. About 20+ minutes before my body started warning me, with what I'm told is an aura. I get a cold sweat, my body is hot with minimally weird discomfort in my my left hip. Oddly enough, Payton got very protective of me. Everytime I tried to get up, she would do everything she could to make me stay in bed. She was very in tune to what was about to happen. It began in my left thigh, and I was hopeful that I could make it just go away/stop. Within minutes it was shaking/hitting very hard. Brett got dressed quickly and poor guy tried to help me get a bra on since I only had jammies on. That was a nightmare. I can only imagine if that had been on video. Future note is to make what Brett said "Labor Bag". has something easy to put on my feet, all my current meds, a sports bra, and clothes easy to put on. Make these mystery episodes easier to deal with

Its hard for me to say "My Body's Secret" isn't taking over my entire life. I am not permitted to be alone ever for now - alone time is something I've always cherished to a certain level. It's really the best time to clear your mind, but also come up with how you are going to solve a challenge, create something new or just enjoy who you are. I find a way to make this happen now but it feels different.

Go back a couple of years, I had done pinup boudoir shots once before in 2007 just as play and something special for my husband. When I did it I was my heaviest- despite that I was in love. It was something I had privately dreamed of for years, I finally did it. We had a couple good ones that worked. Pictures of myself I actually liked. I felt so comfortable in front of the camera. I had always hated pictures, never felt like clothes fit me right well beyond jeans and a tshirt. I wanted to feel this again. I would look at the pin-ups in magazines, the clothes. I was going to look like that. I already had the shape, just needed to tone everything up. I kept it to myself because looking in the mirror at myself I wanted to prove to myself I could do it.  I also had some major changes in my mind to work through. Can a woman that is already a mother and a wife become a sexual being in this sense. If so, am I even close to doing it. How will family, friends, everyone respond to this? And so came a mental and physical desire to change into who I was. As an adult I had never seen myself as a sexual being, Rarely did I see myself as much more than a mom and the variety of jobs i threw myself into. The change was complex but I was proudly doing it with great success;

The "Secret" really began changing my life that beautiful evening September 30, 2009 as I ran with my son as we did often - it was our 5 mile night. I was down almost 60 lbs.  We were preparing for a 5K for Susan J. Komen in San Diego. It would be my first and his first not cross country event. I was feeling like I was in the best shape of my life physically. My appearance wasn't quite what I envisioned but time and work would get it there. I remember thinking I will finally feel comfortable that I really want to push Pinup Photography after we successfully completed the 5K

That night running about 3/4 mile into it I suddenly just crumpled. I remember the feeling today like it was 10 minutes ago. I couldn't even walk. I had the worst pain in my lower left pelvis. My husband picked me up and I alternated ice and heat, took pain meds from a surgery. The next morning I went to work, quickly realizing that I needed medical attention. Since they have removed adhesion's, my cervix and uterus, repaired left inguinal hernia then a subsequent neuroma. I've done physical therapy, tried to "walk it out, I've taken massive amounts of prescribed meds, nerve treatment meds. Last resort/hope spinal injections at the L5/S1, SI joint and a "trigger point".

Three days later I found myself with not only undiagnosed pelvic pain but now tachycardia and what lead to 22 days in the hospital, and an undiagnosed neurological condition that results in conscious full body muscle spasms that will continue endlessly without IV Ativan. This is part of my new reality, my goal - for today and readers bear with me please - is to help me find a sense in everything that has happened, will happen and how it affects my ultimate goals and dreams. I haven't even gotten into my family, my "real" job - yes I am a working woman. I believe right before all of this began I was having great success. I was proud of my performance, my intellect, influence, and how far I'd come. Since 30 Sep 09 I have barely been able to work and the work I have done I have considered to be embarrassing because it didn't represent the best I am. Pain meds, pain and other medication got in the way.

OK Time to close out - more tomorrow on Pin up...

It's All Perspective - Plans??

Since my last post I slept - I ate lunch - and I slept some more. Brett brough me a Ruben from the famous Jerry's Deli. It was good. Nice to have something to break things up. Oddly enough (and very sad) Jane and Jerry Maurice (friends from Ridgecrest) are here. Jerry is having major heart issues. Jerry is looking like he needs a heart transplant. I listen and realize how "little" my problems seem to be right now. People in my unit of the hospital have typically had brain surgery or something similar effecting their neurological function in a very serious way.

I bring this up as a reminder that I need to refocus. I don't begin to understand what God has planned here. Why am I sitting here in this hospital bed, 18 days after I was admitted. Why are all the doctors stumped? I've had more tests done than I can begin to count or probably even know. I have specialists I don't even know trying to solve this mystery. Today I got angry,frustrated, emotionally overwhelmed. I slept for hours off and on. Sleep my body needed and could use days more. My mind doesn't know how to work this without a plan. What is happening? What is the diagnosis? Based on that diagnosis what is in the future?

Not only do I not have a diagnosis, I have these terrible 'episodes' that feel like seizures. Just as a starting point it would sure be nice to just have a name for them!!! I was told they were myoclonus episodes for a few days, then one of my specialists decided that was incorrect. Just thinking about the fact that I have been in here 18 days I have no name - I can feel my heart race. I am sure my heart monitor that is at the nurses station and monitored down on the 5th floor is wondering what changed. Why has my heart rate changed? What is going on in my head? The cardiologist has me on a beta blocker to treat the heart rate - it has not gone below 100 since this mess started 5 August. They said today that my blood pressure changed and was too low for the medicine. The aide did it manually and I can't help but think "ya right" The next time they took it - an hour later it was 120/78. Sounds much more along the lines of my "regular".

Well long discussion with the gastroenterologist - the best new specialist I have. He comes by every night whether he needs to or not. Apparently we are looking at my adrenal glands as we speak - waiting for the test to come back. He felt the MRI looks fine - for some reason my left abdominal muscle is significantly larger than my right. Curious??? They don't seem to have a reason. I do have one more specialist to look at the MRI. She has done my last two surgeries. In the past, she has found things when no one else has.

Well, out for tonight. I'm suddenly roasting hot and feeling out of breath. Not good signs for me lately.... wish me luck

No Sleep and Frustration

As you can tell by the title - I have not been sleeping so hot the last couple of nights. the morphine pump helps however my pelvic pain has increased to such that as soon as my dose drops a little i wake up hurting. For now we are waiting for the doctor. I am hoping we will have some information from the CT scan of my pelvis. New pretty extreme change in the pain lately. I am not sure what has changed. I am wondering if I either did something during an "episode"  or if it is just getting worse. I am having to increase my pain meds greatly. That being said - if something is spelled wrong so sad so sorry.  I keep drifting in and out

Sirens, Struggles and Sunflowers

I have the best and most amazing intentions of getting this done every day. I type away each and every chance I get - determined to post every single day. For some reason, I write a lot - but when I look back it makes not so much sense. I'm sure this happens with some of what tht ends up showing up. I am sure it is the morphine I'm on to deal with pain. Thursday night was the worst seizure yet. It began a beautiful evening everything quiet and taken care of, Brett got packed to go home Saturday morning and we were relaxing.

Some important information/background we have learned about my condition: we know that 500 mg of robaxin via IV works (with a cocktail of additional meds) a great prevention for the non-epileptic seizure. There is not an obvious medical  reason why this particular muscule relaxer works but so far it is the only means of prevention/intervention. It MUST be given in a very timely manner. The  meds didnt show up. I begin having pre/symptoms

**This blog didn't quite get finished but here it is

When is it Enough

I want to do this blog and my goal is two things - make it honest and daily. Daily hasn't been so easy. My body, mind, fingers don't always cooperate. I also always want to be positive. I am positive most days. Today I am having a hard time. The last weekend has been a major change. I can't tell you what happened when - I can say that it was rough. The MAJOR highlights were Jaimie, Nick and John came to visit, brought beautiful cards, flowers, gifts and most importantly themselves we enjoyed wonderful conversation and a delicious dinner they grabbed for us from California Pizza Kitchen.

Saturday my Dad came by in the morning and sat with me. Later in the morning/lunch time, Correen and Breanna came by - we visited, they went shopping while I rested. When they came back I was in the middle of a pretty good seizure/episode. NOTE: Technically we don't call them seizures because they have ruled out epilepsy. Correen supported me through the rest of the event - just being there, rubbing my arms, back gently. I was so embarrassed to be what I was at that moment yet I have never been so thankful for another human just being there by choice - and seeing I didn't scare her away. Finally my new neurologist has been assigned to the case (We had to fire the original one for multiple reasons). His weekend cover came in during the "episode" and immediately ordered 1mg IV to stop it. Within 20 minutes I felt beat up and worn out as usual. I believe I had another one that night but honestly I can't remember. The days and what happens is all jumbling together.

Sunday is a little bit of a blur. My mom and dad came over in the morning. That was nice because hadn't seen my mom in a couple weeks while she was taking care of my grandparents. The three of us had lunch - and of course of soft serve. My favorite is the bigger the better from downstairs. Brett returned some point after lunch. At dinner - I had a gross combo of food on my dinner tray. Food that I for sure wouldn't have ordered. I'm lucky because Brett went downstairs and got me something yummy. I can't breakdown exactly when they all happened, but I had a total of 4 "not seizure" events between Saturday and Sunday. by the time the last one finished last night it was midnight. Luckily our new neurologists weekend on-call didn't believe "Just work it out" and prescribed 1 mg ativan by IV. They have never worked  themselves out alone. We have always had to use medication to stop them.

I am struggling today because for some reason after four attacks in just around 24 hours my body hurts everywhere. I feel frustration with my medical staff because they don't have answers, they keep telling me what it is NOT, the "not seizures" just keep getting more frequent. In addition to all this happy new stuff, I still haven't figured out my pelvic pain - I have learned that thrashing around in a bed harder than I ever thought possible - is NOT good pain treatment for it, not are the alternative twisted back spasms that the "not seizures" bring. I'm taking a list of drugs that has my brain so muted - however I seem to still be wide awake and hurting like hell.

Because the doctors won't make a fucking decision on what the hell is going on with me - I am going to get fucked again. My doctor put me on the neurology floor for a reason. He gave me a very large room with a sitting area, dining table. The nurses on this floor have been perfect. They understand what is happening and what I am experiencing. They are trained for it. Thursday they are moving the entire floor to allow for renovations. Apparently it has been determined that I am not going to stay with the unit because all I have is a a"medical problem' i.e. who knows what the fuck is wrong with me. So, as soon as possible they are  planning to pack up me and all my shit and ship me to another floor. They won't understand my "not" seizures at all - if they even see people have seizures. So back to hell where I was the beginning of the stay. It's hard enough that the doctor's don't have a clue what is going on - the relief the whole time has been at minimum the nurses understand. Now we are back to square one in every shape and form.

I am crying and done with the day - it's not even noon.

Major Change of Focus

OK So I have actual information. Not the kind that actually does a whole lot to help me - but the kind that gives us some sort of focus that was MUCH more productive than the last two weeks.

So to catch ya'll up. And my honesty is going to open up all kinds of jokes....so let's dive right into it. So the neurologist that initially was part of my specialists team - he of course of the lead being our concern was seizure activity. As I've explained I did not have any seizure activity show on either the initial EEG or the 48 hour EEG. Thus Dr A's determination was that basically something "mental" was causing the issues. A number of things were "assumed" basically it was some sort of a panic attack type response. Therefore, while some doctors were spending their time eliminating life threatening or dangerous issues that would cause similar symptoms, he opted to not follow any neurological path at all - he got the psych team involved.

I had a COMPLETE psych evaluation. the first being a oral/questions etc. with me and a panel of 5 people including a psychologist, psychiatrist, social worker and two specialized individuals. The next step was the completion of the Minnesota Multiphasic Personality Inventory (MMPI). There was something just hilarious about the fact that they had me completing psychological inventory while I was on pretty decent levels of oxycotin, klonopin, ativan, morphine, benedryl and robaxin - if I wasn't on all these meds I'd be having seizures and unable to complete the test. Needless to say I found the test and the questions more than hilarious. You have no idea the things I still think would be hilarious answers. Within 15 minutes of the test being completed the psychologist came to us to say I passed everything and there was no "psychological" reason for the seizures. I have no psychological stress factors and I normal stress in a healthy way. Every thing came out that I am perfectly normal. He then says that the seizures are "psychogenic non-epileptic seizures" He THEN had the audacity to explain that these types of seizures are a result of people not dealing with emotional stress in a normal way.When I asked for an explanation I was told that all they could guess is that the physical stress (although there is no documented case of this) from having chronic pain over the past two years.

Needless to say I had a problem with lack of logic in this. I was then further explained that this was just a "symptom" not a diagnosis. So, the GREAT NEWS it took two weeks in the hospital to "name a symptom" that wasn't accurate based on the definition. I smiled and asked the physicians I saw how we planned to treat. No real answers. The only treatment we are having success with to actually STOP the seizures is a cocktail. I take lyrica 2x a day oral 1 mg 3 times a day, 25 mg of benedryl 3 times a day and IV Robaxin every 6 hours. For my notes we just changed this slightly on Sunday. We were using klonopin vice ativan. I felt like it worked better.

Out for now. Love everyone.

Chilling,,,,

Me in my current hang out

Thanks Daddy!

Had a very nice dinner with Brett and my Daddy! They brought California mailto:!@!@a Ki,@tchen. Chicken Piccatta yummy!! I ventured outdoor offer my comfort _ Veggie Sandwich with schezwan slaw. I'm going to be pulling a Kellen here pretty soon and pig out on the rest. Finished dinner up with coconut frozen yogurt with chocolate chips. I know I am seriously going to gain some serious weight. Lol
My morning was beautiful-  a wonderful breakfast with Brett sitting at the table in the room - out of bed . He headed out to do laundry.  I curled up in bed delighted for the first time in just a month short of a year - I worked a crossword puzzle and dozed. Just before 1230 the twitching and flailing began. This myoclonus episode lasted about 2 hrs. Extremely frustrating for me - if the pharmacy had filed my medication on time it could have been 20 minutes. Seems to be an ongoing issue that just really tortures my body. These people are careless in that their lack of attention to detail results in my despair.

Full body spasms I don't recommend. You know when you workout - I mean workout so you don't want to move tomorrow..... this would be welcome pain. I am thankful for pain medicine tonight. The PCA morphine has really been helpful. The funniest part is afterwards I am ravenous - its horrifying how much I eat. I wake up those night absolutely having to eat. God help me, I see a major diet in my future.
I must share frustration with the medical process. I want more communication! I have a team of doctors, the lead seems to be as defeated and frustrated. I couldn't even list for sure who is on the team as an active prescribing member, consulting officially, consulting unofficially. They have added acupuncture to my regimen. She isn't consistent. And the one session felt rushed and I hurt like HELL worse than before. The next session is Thursday we'll see....
I must not go without saying thank you to a stranger. Pepe is a wonderful man that Brett has become friends with. Pepe built the frame on our hot rod and has become a dear friend to Brett. I have yet to have to pleasure of meeting him. He has been a great source of support and spirituality during my illness. Angela his wife, neither of us have ever met. She was in town and contacted Brett and brought us lunch. I was very much looking forward to the visit and meeting her. Unfortunately I was so involved shaking and flopping to do

The Blessing of Victor

Victor is an older man, somewhat tall and thin. He isn't what many people imagine in his role as a Clinical Partner (vitals, getting me ice water, straightening my sheets for quite a few days. He is always quiet as he does his job vigilant and with a level of perfectiom-  his compassion for his patients is evident. In all our days he has simply introduced himself. No other words were spoken.
Last night he came in about 4 am to take my vitals. He looked gently at me then glanced to Brett sound asleep.
Victor said "You have true love. I have quietly observed you both. I don't see this often."
I told him yes I agreed, and I am truely very blessed. And we discussed that he also had been married 33 amazing years. He asked about my children which I of course bragged and asked about his. He shared he had lost his son of a rare respiratory disease in 2007 at the age of 22. I shared the loss of Miah. How no parent should ever suffer what he had. It was as if he had never discussed it with anyone. As he left for the night he came in and looked me in the eyes and said "You will never know what tonight meant to me."
Never underestimate the power of a simple kind word. He was here to care for just very basic needs and in the end we both were blessed.

Wires, tubes and buttons....Oh MY!!! (2)

Ok trying something new, emailing my post in. The last one dared to cut I'm off. Before I go into my medical challenges today medically speaking - I learned a very valuable lesson on dreams today. Most of you know despite my illness I have had opportunities to do some pin-up modeling. The last opportunity my gut said just Do It. My mind/body wasn't quite as such either, but with encouragement from my always amazing husband I went along with it. I got word today fro, Shannon Toy, my photographer - some of the photos have been chosen for a 3 page spread for Hot Rods and Pinups Publishing Company and Contest.
My goal going doing modeling has been to be published - I assumed an amateur small shot. This just is beyond a dream come true. I have one to their coffee table books from the past. My second BIG dream is to become a Pinup Angel providing support for our troops -  USO tour would be the ultimate.
Something else I have dreamt about even longer for as long as I can remembered. Write-  a book, a novel - a blog for now. I have read a a few autobiographies that started just this way.
Now to medical - I'm going to be blunt-  one of the worst days in many months. I woke up from a very hard sleep at 1:30 am with the worst pain and it seemed everywhere. It was terrible. They say 10 they aren't kidding. The pain meds they administered did help my right side. The left nothing. I cried like a baby. The doctors all argued over who was responsible for pain meds- neuro wouldn't because of cardio symptoms, cardio because of neuro issues, internist bc pain management supposed to - and they had quit because the gastro had removed all tylenol meds for a 24 hr test. Finally 7+ hours later they figured something out and my internist gave me a pain pump with morphine. Along with a heart monitor (apparently that had nothing to do with meds), I have to be on oxygen because of respiration's. I have 2 IV ports one in each arm because the robaxin (prevents stops myoclous) can be administered with morphine or much else apparently.  Luckily it is only hooked up for an hour 4 times a day. You should seriously see the wires and tubes that are every where....and as we all know I'm not exactly graceful. Next thing you know I'm going to have some incident involving getting tangled, trying to walk
So despite all that I got a good dose in me, ate lunch and was OUT for a good nap and Brett who had been up just as long went for an almost 3 mile walk.
I am writing this in the wee hours when I should be sleeping. ....

What day is it????

Waking up this morning I realize two things I have been in the hospital far too long -secondly I had no clue what day it is. I have since clarified that it is Sunday - just turning on the TV and seeing all the political bantering. I have now been in the hospital 12 years....oh wait that is 12 days. It just feels like the previous. They have finally stopped bouncing me around between rooms (must mean I'm behaving finally and not being evicted).
I tried to spice things up for us all yesterday - I had a few minutes of chest pain and shortness of breath yesterday. This led to the excitement of a few extra tests and the heart monitor back on my chest. Good news for all I'm sitting here typing (maybe not such a great thing in the eyes of some - if so stop reading)  There were no blood clots in my legs, no pulmonary embolism. They filled me with some nuclear isotopes and scanned everything. A leg ultrasound on my legs, and my permanently attached heart monitor. Cardiologist said they picked up some tachycardia at some point but so far everything is healthy.
I am processing how difficult my situation is not only on me which is obvious but those that are close to me. One person that I love so very dearly is very much struggling with this. The way this person sees situations like this as "drama" and has needed to simply keep their distance. Its so hard to have them so far away.

Teddy Grahams and Vanilla Pudding

Before anything else.- The ability to comment has been fixed. Anyone is able. I would like it if you registered so I know who is following or leaves the messages. While this is my open and honest means of expression I would rather you be able to share anonymously than not at all.

T\oday is going to be a good day. My nurse is named Noel - he seems absolutely fabulous. Just his spirit and excitement brought a smile to my face immediately - AND we share a name. For those that don't know my middle name is Noel. Only difference Mom - his birthday is at Christmas NOT June. Hehehe. We already had a good laugh about how many Christmas decorations we have with "Noel" on them. Something we both have grown to love as we got older.

As I tried to warn earlier - I intend to write very honest experiences and feelings. I know that it may be hard for readers and I can't apologize but I can say thank you for reading and showing an interest in my experiences both good and bad.

Before I started blogging this morning I lay in bed (feeling like I literally was in a serious car accident last night). Last night I had the hardest myoclonus episode yet. Physically it was thrashing, exhausting, terrifying at times. As I experienced it this time, I prayed why do I have to be awake and feel the pain, the fear and know all the terrible things happening to my body. Up until I believe yesterday I had never had head involvement in these episodes. Let me start by saying i had four episodes yesterday. They lasted anywhere from 40 to 90 minutes (I believe). The first one started at 4 a.m., the last one at 11 p.m.

The last two episodes were very emotional for me. I try so hard to be strong as I experience them. I believe giving in to emotions doesn't do any good. I broke down, tears flowed and I cried like a baby. Brett does a wonderful job reminding me that I need to breath. take nice deep breaths. Try to calm down. The tears flow and the crying feels like it rises from somewhere deep inside. A place of fear, frustration, pain and exhaustion. At times I am angry - angry because the pharmacy delayed filling the prescription on time, angry because the nurse doesn't seem to see any rush in administering my meds on time so that this doesn't continue to happen. Even anger with the doctor for deciding we should try to Robaxin pill vs IV. We did it once it didn't work, why on earth are we doing this again. I'm the one that suffers - not him. As I shook and jerked and kicked and hit - and did more head banging than any sober person would do at even the best concert - I'm even questioning how much alcohol (or other) it would take for a person to intentionally shake their head in such a violent means on purpose. My back is arching and twisting at the same time. When such unnatural movements happen my mind is almost yelling at my body - STOP YOU DON'T BEND THAT WAY. My back doesn't listen and like a rebellious teenager it turns and twists even further.my legs kicking sometimes slowly then another instant faster than I believe my body is capable of moving. My left ankle twists with such intention. I scream in pain. It seems each time it does this it twists further inward. Brett helps remind me again and again - relax deep breaths.

As the episode comes to an end I'm scared the left  side of my face is almost numb. It feels so weird. One of the neurologists favorite things to do is have me smile big - I hadn't quite understood until last night. when I tried to do it, I felt like that part of my cheek was droopy, it didn't feel like my cheek muscles were tight. I found myself fighting the muscles to force the into the proper formation. I got it there but it scared me. More tears flowed. my body feeling like a rag doll. so often during the episodes - especially this one. It wasn't the longest by any means but it was the worst in terms of strength. My body kept fighting and insisting on the violence despite the feeling that the muscles were jello.

This morning the pharmacy was lax in getting my Robaxin (a strong muscle relaxer that if given by IV every six hours. This is the first Iv dose since the doctor agreed to stop trying to utilize the oral option. I got IV ativan in hopes of relaxing some before the Robaxin arrived. The nurse was wonderful pushing through with the pharmacy, taking care of her other three patients and of course me.

Before I started blogging this morning I reflected on my body. I feel like I've e been hit by a car or some other accident. I rolled over and smiled. After the episodes the nurse had brought my after "exercise" snack. i was so exhausted and weak. I had a small vanilla pudding a teddy grahams. I don't remember the last time I ate teddy grahams before this.

Its nearly impossible for me to go through this experience without thinking of Miah almost every time. I worry about how the kids are handling it. It was so good to see Alex and Sean last night. Brittany decided to stay home. I cried quietly for them. it hurts me that they have to see me like this. I hate the amount of loss they have experienced in their young years. I can't begin to imagine the fear and emotions they are feeling just walking into a hospital room - much less to see your mom sick and having been here 11 days;

I'm going to wrap up for now. I'm hopeful that breakfast will be here soon. I am ravenous after having all those episodes yesterday. I am looking forward to a big breakfast. I am praying that today is less active. We have also requested a sit down meeting with my lead physician in hopes of gaining a better understanding of where I'm at now and what the plan is.Also hoping to get  better grasp of who all my doctors are an what they are contributing. We have random doctors from specialities I never knew existed. Lets hope breakfast is here soon. I'm starving.

This is an example of a tonic hip, knee and ankle during and fter an episode. This particular time it didn't respond until over 3 hours after the episode ended.

View from the second picture window in my room. Absolutely beautiful. I am so lucky to have a penthouse hospital room - the dining table sits right next to this window.

View just before sunset

My personal favorite is looking out my window next to my bed and seeing the star of David. It is a wonderful reminder of who has control. It has helped me relinquinsh control many times.

Tonight 19 Aug 11

Well I posted a pic tonight of me wearing my 48 hour EEG. Our little joke is I looked like Joe Dirt. We try to find as much humor in our nightmare as possible. I'm had three myoclonous episodes through out today. These aren't seizures but they are rough on the body. I try to be positive and accept the discomfort and downright pain through each one. God is good and provides me with the strength. Last night my lead physician told me I need to walk to halls 3 times each day, in addition to around the room I'm in. I woke up with an episode at 4 a.m. and after receiving ativan and morphine it was gone just in time for the MRI/MRA. I understand from a very short visit from my doctor that they came back clean. Which is good news.

I took a walk later this afternoon and similar to earlier in the day - I ended up with another episode. It was at this point in the day I lost my strength of good attitude. The pain was just more than I could handle. For the first time here in the blog I admit I broke down and cried my eyes out the entire time. I was hurting, my body felt like it couldn't handle anything more. I am so blessed to have Brett by my side remiding me to breathe. I was hard, but I lasted the 40 minutes and made it through.

My medication regimen to treat the myoclonus has been Robaxin, Klonopin, Benedryl , and as a last resort 1 mg ativan via IV For pain a combination as needed of percocet, oxycotin, tyelonol and last resort IV Morphine. The doctor's have played with the use of Robaxin administered via IV or per oral route. I immediately found that it does not seem to be working for me orally. The past two days they had gone back to insisting on per oral on the Robaxin. In doing so I have averaged 3-4 monocluous episodes - prevention meds. Little or no benefit. Tonight after my breakdown nd complete and utter exhaustion due to my episode this afternoon, I pushed my point with my lead doctor that IV Robaxin in my only option. I thrash so strongly and become so tonic at other times, I was very concered that I was beginning to injure myself, and risking more serious injury. Luckily, I learned from the nurse that I had been successful. I am expecting the next dose soon.

In response to this same issue I got upset and have gone through some various rounds. We have comprised a list of at least 9 specialists (not counting their residents, fellows, students, nurse practitioners). Keeping track of their individual plans, tests and orders has began to feel impossible. Often times it seems they haven't talked or shared plans themselves. With this sort of situation, and so many changes every day. I am praying we can meet with Dr I and start understanding better what is happening and what will. Hopefully tomorrow will provide something in this direction. I am happy for feedback from those who have been in this position.

On an amazing note - Alex and Sean were here tonight. We all had dinner together and of COURSE Pink Berry. My dad was kind enough to go pick them up at home and bring them down for the weekend. I have been so stressed out how on earth would we get Sean ready to start high school. Alex has books but getting the resources to them and finding the clothing they need to start the next steps in life. Brittany was hoping to come however she wasn't feeling well. Please pray she is feeling back to herself in no time.


Here is some information on the diagnosis. Couple different sites that I find very helpful. http://en.wikipedia.org/wiki/Myoclonus or http://http//www.mayoclinic.com/health/myoclonus/DS00754.

The doctor told me that 1 in every 100,000 people are diagnosed with this disorder. As I said we are putting a lot of research of into it and what is causing it. It appears it may be genetic. One other find that my Thoracic MRI uncovered early in the week was thoracic recessed lateral stenosis at the T-10 and T-11. I had an epidural put in this space Tuesday. It was a nightmare with the myolonus. This issue has been diagnosed as genetic. We believe it may be connected to the on goinm pelvic pain, however. the episodes irritated the area and left me feeling like I was kicking in the back by a horse.

For those interested in seeing what one of the episodes looks like. We have documented many of them via video in order to share with the neurological staff. If you go to http://www.smugmug.com/ search for american metrics - Go to the video gallery where the password is ametrics.

The video is disturbing (at least for me) so I'm warning you. I keep questioning sharing this information. I feel like being honest and maybe at time joking about it will make my journey somewhat easier. It is terrifying don't get me wrong. I cry, I laugh, I wonder why me?? Epilepsy type things for some reason have always been my biggest fear. After doing hours of medical history I realize I have had it my entire life. I have had twitching, jerking, even a few seizures as far back as 13 years ago. I was scared and ignored them. Then when I went to the doctor I was told after a few tests - I was just having Anxiety and I should probably just take zoloft and "deal with it". Now I have doctors asking why am I just now dealing with it. The reason was fear one and two because when I tried I was denied as an overzealous paranoid woman.

Well, I'm about out for the night. I am ready for my night meds and sleep. My body in it's entirety hurts worse than any workout I have ever done. Please ask questions, let me know what you're wondering or thinking. My biggest advice after this is stick up for yourself. When you know something is going on - follow up. It is better to be safe than sorry.

Tonight I want to say a special thank you to Correen and Breanna for bringing us a bunch of stuff from home this week (we had nothing considering we can for a doctors appointment). My dad has spent hours here afterwork and even has taken time off to spend time with me and giving Brett time to get away. Ashley the same thing - we had some wonderful time together. Terry Robbs thanks for offering to visit. I'm sorry I wasn't up to it. Jenn, Terry, Dennis your words keep me going some moments. You have no idea! I have the best most supportive loved ones. Oh and I almost forgot someone VERY important - Joe you continue to do more for us than I can even begin to list tonight.

Please pray for my strength and pray the doctors find an answer. I would love to have comments, and see who is following. If you have questions about what is happening, what we need, anything this is really the best place. I have noticed thanks to the meds. I forget about text messages. This will keep it in one place so I don't loose something.

I know this is helping me, I hope someone appreciates it. Love to everyone!!!