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.