Thursday, December 11, 2008

The Life of a Lymie...

Thursday, December 11, 2008

If you saw me walk without my cane, you’d swear I’m drunk. I stumble, trip; my weight will randomly shift from underneath me; I mis-step; I fall. I’m totally sober, I’m just getting weaker.

I had some minor seizures the other morning. I had 3 or 4 uncontrolled head movements yesterday. My back pain is getting worse. I have almost no range of motion in my neck or back. I’m getting worse. I’m freaking getting worse.

And yet, I can’t get any results, answers, or information. None. Why? Because they don’t have the MS blood results yet. They won’t tell me if they see Lyme in my spinal fluid. Or Babesia, or anything else. They won’t explain the MRI results. Nothing. Not until they get those damn MS results back.

Why?! My brain CT’s and MRI’s were all clear: no plaque or lesions on my brain. So, why does everything seem so dependent on this bloodwork? Did they misinterpret my CT’s and MRI’s? I feel like something is being hidden from me. I think they found something, but don’t want to break the news until they have everything, or need this blood to confirm, or something. But, dammit, it’s been 2 weeks! I don’t have time to fuck around – especially if I need serious treatments or surgery! Apparently, my pain, my condition, my needs don’t mean shit. My life is now based on other peoples’ schedules.

I couldn’t sleep last night. It was my first night without Tylenol PM. I’m trying to wean my body off it, but I am failing.

It doesn’t help that I have to do everything for the insurance company all over again! Every time I make contact, it takes them at least 10 days to get back to me. At that time, they’ll reveal VERY important information that they conveniently forgot to tell me last time I submitted my paperwork. I wrote to the president of the brokerage a week before the MRI, spinal tap & blood patch. I gave her my new address, wanted a status up-date, explained that I was having all this done & so would be in recovery for a while, gave her all the doctors’ and hospitals’ info, etc. I never heard a damn word. Amazingly enough, today she calls me. What did she say? She told me I have start over. I have to COMPLETELY re-do all my submissions & have all of my doctors RESEND their paperwork for the umpteenth time. Why couldn’t she do it while I’ve been on bed rest for the past 2 weeks? Oh, because that violates HIPAA. And she couldn’t have written back or called me to tell me that BEFORE? No, let’s have me wait yet ANOTHER 3 weeks before I find THAT out & learn that everything I have done is null and void. These people are getting paid to do what again?!

Damn. I’m tired. I’m frustrated. I’m very painful. I’m confused. I’m stressed. I am sick of the bullshit that surrounds Lyme disease. This is beyond ridiculous.

Wednesday, December 10, 2008

My REQUIRED Reading List ;)

Besides my own books, of course ;)

Seriously, you MUST read anything & everything by Chelle Cordero. Why? Because I said so! Because her books sweep you in right away. There is so much depth to her characters. Her plots are full of twists and intrigue. And they're just plain good!

-Bartlett's Rule
-Forgotten
-Within the Law
-Courage of the Heart

Go read them, y'all!!! :)

Wednesday, December 3, 2008

Excerpts from my Lyme book about the tap, patch & current status

Sunday, November 30, 2008

I'm laying in bed, and have been since last night.

The spinal tap on Friday went as well as one could go, I guess.

First, they took spinal x-rays. Not in the usual way, though. I was laying on my stomach & they took the x-rays from above me. They shot 2 films.

Then they "prepped" me. They tucked sterile drapes in, on, and under me. They scrubbed my back with Betadyne. Then the real fun began.

They injected my spine with Lidocaine. It burned and stung. Just when I thought I was ok & able to handle it, they went deeper and injected more. I tried not to grunt, and tightly gripped the table.

As they advanced the needle from which they would actually draw the fluid, I found that that pain compared to muscle spasms. Since I get muscle spasms in my back on a frequent basis, that actually wasn't too bad.

They slanted the table in increments to have gravity help them obtain the samples since it takes a while to get spinal fluid. By the end, I was almost completely vertical!

After what seemed to be an infinite amount of time, they were finally done. They slowly lowered the table, cleaned me up and put a band-aid on my "ouchie."

Then they drew a blood sample as well. They're testing me for MS again. All of my brain CT's and MRI's show no plaque or lesions on my brain, but I guess it needed to be done.

Slowly, I rolled onto my side to start to get up after it was all over. Instantly, I experienced the "spinal headache." That term does it no justice. Let me just say this: I've had migraines since childhood. Debilitating, nauseating migraines. This made them seem like a walk in the park.

The headache came & went Friday night, but it was tolerable.

Saturday morning, though, was another story. The pain woke me up. Even laying down, the pain continually increased until I could not take it any more. By 10:30 am, I was on my way to the ER.

They placed me in a room about 30-45 minutes after I arrived. Not bad for this particular hospital.

I eventually got an IV & they ran 2 bags of fluid into the line. One was just regular saline. One was saline with caffeine.

The caffeine drip did help to take some of the edge off.

At around 4, an anesthesiologist arrived. It was time for me to get a "blood patch."

What they did was almost like an epidural. It was much stronger than the lidocaine. It burned and caused tremendous pain in both my legs. Then they drew 20 cc's of my own blood, then they "transfused" that blood back into my spine to form a clot over the hole from the tap. The hole from the tap caused me to leak spinal fluid, which caused the unbelievable head pain. This second procedure was like "fix-a-flat" for my spine!

About 60-90 minutes later, a new anesthesiologist came to check on me. He made me sit up in the hospital bed. The headache was significantly less than what it had been before. By 6:30 pm, I was on my way home.


No headache today (thank heaven!). My back is very sore & my legs still hurt to some degree, but I feel so much better. It was well worth it. I'm on strict bed rest for the rest of the day & I have to be extremely careful for the next 3-5 days, but I'll be ok. Now all I have to do is wait for answers…

Wednesday, December 03, 2008

Still no headache. That blood patch pretty much instantly cured me! It's been an amazing relief. My back is still very sore. I'm taking Tylenol 2 – 3 times per day. My mobility is extremely limited, and I am only comfortable lying in certain positions.

I'm still waiting on my results. I pray they come today. I desperately need answers!

Friday, November 28, 2008

I Might be MIA for a While...

Hey all. As many of you know, I have my spinal tap later today. I'm supposed to be in bed for the rest of the afternoon today & all of tomorrow. If I can, I'll try to go on-line to at least up-date you, but I can't make any promises.

Additionally, we're moving Sunday (talk about timing!!). Due to my limited mobility (and ability to hook up my comp), as well as just the usual moving transition, it may be a few days before I'm back on-line. Please understand that I am not ignoring anyone, and that we are working hard to getting back to running at 100% again.

Please be patient with me for the next few days or so. You're all in my thoughts & prayers. I'll be in touch when I can.

Much love & many blessings to you all!

Thursday, November 27, 2008

Medical Up-date

I had my MRI Wednesday afternoon, and the Spinal Tap will be on Friday.

I have contacted a lawyer to begin the process of getting social security disability (it’s an absolute must at this point), as well as a possible medical mal-practice case against the original infectious disease doc.

I'm not worried about the actual procedure, but I pray that my spinal MRI will be enough of a diagnostic for disability. I pray that the Lyme (and possibly any other tick-borne diseases) show up in the tap to confirm what we already know to be true.

The MRI went well. We could get the results as early as Monday (they said figure sometime between Monday & Wednesday). All I can do is pray that we can use my screwed up spine as a reason for disability.

As for the tap...All I can do is pray for strength, endurance, and REALLY good drugs ;)



Monday, November 24, 2008

I have my procedure dates - and they're THIS week!!!!

Oh thank every deity that ever lived! I FINALLY have my dates!!! THIS Wednesday, as in 2 days from now, I will have my spinal MRI with contrast. Then on Friday. THIS Friday, the day after turkey day, I will have my spinal tap!!!

I am SO relieved and excited! Thank God, this is over. I'll be getting my answers soon. This has been hanging over my head for so long, and I could not be happier that not only is there a light at the end of the tunnel, but I am sitting in that light!! Woo hoo!!!!!!!!!!!!!!!!!!!!!!!!! :)

Saturday, November 8, 2008

Today, at the 7th Annual Vegas Valley Book Festival

I was ridiculously excited and nervous. Things went wrong. I kept adjusting my books & flyers because they had to be perfect. Yes, I was in "anal retentive" mode.

I had the most books there as far as number of books we've all actually written. The next closest was a middle-aged man who had 4.

I had one woman come up, a fellow local author, actually. She offered to help. She said that her own survivorhood was something that God was putting in the forefront of her mind. She also said that God told her that she needed to help others. She fully believes that my presence there was to provide a means for her to do that.

I had one woman comment on how great my titles are. Several people commented on the beauty of of all my covers.

I was passed by often. Some people would at least respond when I smiled & said "hi" to them. Others walked past. Several flyers were taken, but not enough to make a real dent in the 115 that I had printed. One woman seemed like she wanted to buy, but then she asked about ordering on-line. She, too, took a flyer.

I saw a woman with an older child come in. She was wearing sunglassses, but they couldn't hide the black eyes underneath. I greeted her when she first came in, she responded, and then browsed through everyone else.

She later returned, and as she was looking at my books, she began to understand what my books were about. She took off her glasses, and displayed her bruises to me. She told me they were inflected last Saturday. We talked briefly. I told her to take as many flyers as she needs, that I was willing and able to help in any way. She began to cry. She thanked me.

Several people had actually thanked me throughout the day, but hers meant the most.

I befriended a few of my fellow authors. We exchanged numbers & e-mails. I also met a fellow author, survivor and chronic Lymie! She was my other big blessing of the day. We just connected. She gave me a copy of her book, and I mine. We'll be in a Lyme support group together, and I know we'll also be talking on survivor issues as well.

I had ZERO sales. None. Not one red penny. Every book, save the one I gave the Lymie, that I brought with me came home with me. And ya know what? I don't care. This day couldn't have gone better. Money's nice, sure. But holding strangers' hands while they cry with me & thank me; raising awareness and education; building more on-line traffic to rapehelp.org; and allowing survivors the opportunity to shop safely and discreetly from home are what today was all about. I'm not here for money, numbers or glory. I CONNECTED with people I never would have met had I not had this opportunity. I don't care if my book sales don't make the New York Times Best Seller List. I do this for PEOPLE. I do this for each and every one of you, for each and every one of those people I met today. I may not get fame and glory by typical US standards, but the connections I made today were a glory far greater than that!

Friday, November 7, 2008

TOMORROW at the Vegas Valley Book Fesitval!!!

I have a spot to sign & sell my books THIS Saturday from 10 am to 1 pm at the Vegas Valley Book Festival!!!! If you're in the Vegas/Henderson area, I'd love to see you there!!

Vegas Valley Book Festival

Local Author’s Expo

Saturday, November 8, 2008

Fifth Street School

Fourth and Lewis Avenue Downtown

The 7th annual Vegas Valley Book Festival will take place on November 6, 7, 8, 2008 at the Fifth Street School in Downtown Las Vegas. The festival is sponsored by the City of Las Vegas Office of Cultural Affairs, Nevada Humanities, The Review Journal, TARGET and the Las Vegas-Clark County Library District with participation from the UNLV Creative Writing Department, the UNLV School of Architecture Downtown Design Center and Black Mountain Institute. Over 50 authors will be presented in a full schedule of sessions over 3 days. The event is free and open to the public.


I look forward to seeing everyone there!!!! :)

Saturday, October 11, 2008

Hi all! I just need to quickly up-date you all. I am still going through A LOT of medical stuff. Dr's appointments, blood work, an up-coming spinal tap - there's a lot. As you can imagine, I am a bit overwhelmed by everything.

I'm also dealing with a lot of other issues at the moment, which are also greatly consuming my life.

I apologize for my absence, this is very atypical for me. I'm hoping that things will begin to resolve over the next few weeks, so please bear with me as I try to get my life, and my health, back in order.

Please don't forget the up-coming deadline for submissions for A Survivor's Heart! The deadline is Nov. 25th!!! If you want to be a part of this amazing project, PLEASE send in your submissions ASAP to namid@rapehelp.org

Thanks so much!! I hope you are all well, and I look forward to hearing from you all soon!! :) Take care, guys!

Much love & many blessings,
Namid

Saturday, October 4, 2008

More Lymie News

Hey all! I apologize for the abundance of Lyme-related blogs. As you can imagine, right now this is literally all that my life is about.

As some of you know, I had 2 very bad seizures yesterday morning. I had a migraine all day, and felt completely drained. It was a completely unproductive day. When I tried to go to bed last night, I felt anxious, twitchy and like I was going to seizure again. It was perfectly reminiscent of my first night with seizures. I took myself, a pillow and a blanket and camped out on the couch last night. Thankfully, I did not seize. I just had a rough night.

I'm feeling pretty good overall today, but I am exhausted. I may try to get some more rest. I'm also still trying to get everything ready for my new doc & trip to LA. I'm leaving Monday, I'll be back Tuesday night.

I apologize profusely if I seem aloof or unavailable. By no means am I trying to ignore any one. At the moment, I don't even have the energy for my cats. You are ALL in my thoughts & prayers daily. Please just bear with me as I go through this. Hopefully, I'll be back up to speed soon. I will keep you all posted as things progress.

Thank you all so much for all of your love, concern, compassion & support! This means the absolute world to me! You are all phenomenal people and I am truly blessed to know each and every one of you!! :) Thank you again!!

Much love & many blessings,
Namid

Monday, September 29, 2008

So, they finally released me from Cedars-Sinai Hospital (in LA) late yesterday, and we got home very late last night. EEG & MRI were normal. Which is good and bad. At least we know I don't have a brain tumor or anything. It is definitely the Lyme. The plan now is to get a neurologist here in town & get a GOOD infectious disease doc out in LA & go out there for treatments & so on.

Since I'll actually be home for the b-day (YAY...And with Doug! Double YAY), I have decided that I am going to skip 29, and just be 30 two years in a row. I think that I have the ability & right to make that call after this past weekend! LOL.

On the ride home last night, and all this morning, I've had a lot of time to think about things. For the first time in my life, I am actually paralyzed with fear. Mind you, I have come to accept my new life as a seizuring Lymie. It's just another obstacle in my life, but that's ok. But there's also a HUGE element of fear. I'm afraid to drive. God forbid I have a seizure while driving! Losing that independence is sad & scary. I'm also afraid to work. I don't want clients to see me seizure. What if I was holding an animal? What if I was trying to place a catheter?! What if I fell & hit my head or got injured because I seized at work? It's really very scary when you have start looking at your life in those terms.

My heart had always gone out to epileptics & others who had seizure disorders, but now I know the TRUE blessing of having a day without seizures! It may seem small, but appreciate those days! Laying in wait, never knowing if you're going to seizure, having that kind of fear - enjoy the fact that you don't have to live like that!

I started my new medication, so we'll see how I do on that. Supposedly, it's a really good drug. All I can do is wait & see.

So, that's life as of right now. I pray you are all well. Happy Monday, world!! :)

Tuesday, September 23, 2008

One More Profile To Add To The List!!!

Check out my latest profile at booktour.com -

Book Tour Profile: http://booktour.com/author/14623

Monday, September 22, 2008

All 5 of my current titles are available on Amazon!!!

CHECK IT OUT!!!! I just went to check my amazon reviews and look...All 5 of my current titles are there & are available to be ordered! You have to check this out - it is so cool!!! :)

http://www. amazon. com/exec/obidos/search-handle-url?%5Fencoding=UTF8&search-type=ss&index=books&field-author=Namid

Don't forget to order your copies of ALL of my books from my amazon associates store!! All 5 titles ARE available!!! Check it out at:

http://astore. amazon. com/thrapefo-20/102-4172685-5716968

Sunday, September 21, 2008

Call For Submissions!!!!!!!!!!!!!!!!!!!!

I apologize for my absence as of late. I've been having some medical issues. However, that is not stopping me from writing, or compiling all the works for our anthology, A Survivor's Heart. I ask that if you are a survivor and would like to have your voice be heard, please do not hesitate to submit your writing! We are accepting writings in all genres.

I have had a few people approach me with concern regarding use of their name. You may use your first name, your full name, a pen name, or even anonymous. We do not want anyone to feel uncomfortable or to be put in a dangerous situation.

If you have any questions, or would like to submit some writing, please send it to namid@rapehelp.org

This book is coming out in February 2009, and we'd like to have as many voices heard as possible, so please spread the word!! Thanks!!

Thursday, September 11, 2008

THIS Sunday, 9/14 3:30 pm PST/6:30 EST

I will be on Vanilla Heart Publishing's Books With Heart Blog Talk Radio show!! Kimberlee Williams and I have much to discuss - there is some VERY exciting news, and you DEFINITELY do not want to miss this!


Tune in to http://www. blogtalkradio. com/Books-with-Heart

Don't forget to let others know...This is going to be HUGE!!!!! :)

Tuesday, September 9, 2008

Calling ALL Survivors and Writers!!!!!!!!!!!!!!!!!!

Good morning!! I would like to call all survivors for a wonderful project that Vanilla Heart Publishing and I are working on. We are creating an anthology of writings from survivors from around the world!! We're taking stories, poems, and every other genre imaginable! :)

The book will be coming out February 2009. Each contributor will get their own copy of the book!! 50% of all sales goes to charity to help other sexual assault survivors!

Come, let your voice be heard, and help others to heal as well!!

For more information, please e-mail me at namid@rapehelp.org

Monday, September 8, 2008

Check Out All My Pages and Profiles!!

Check out my:

Website:
http://www.rapehelp.org

Myspace Page:
http://www.myspace.com/namid

Blog Spot Blog:
http://namidsblog.blogspot.com/

Vanilla Heart Author's Profile: http://www.vanillaheartbooksandauthors.com/Namid.html

Author's Den Page:
http://www.authorsden.com/namid

Inked In Page:
http://inkedin.ning.com/profile/Namid

Good Reads Author's Profile:
http://www.goodreads.com/profile/Namid

And don't forget our Amazon Associate's Store!!!
http://astore.amazon.com/thrapefo-20

Welcome to my blog!!!

Hello, everyone! I would like to welcome everyone to my new blog!! It is here that we will discuss my current and future books from Vanilla Heart Publishing, discuss topics relating to sexual assault/abuse and where survivors can find a safe haven.

I would like to thank the wonderful folks at Vanilla Heart Publishing for all their support and hard work! It is more than appreciated!! :)

I would also like to thank my fellow VHP author, Chelle Cordero for inspiring me, and informing me of great websites such as this! :) A million thanks for all your help, Chelle!

Now, without further ado, I would like to take this opportunity to discuss some of my books.

Currently available:

To Dance Amongst the Stars. This book is my personal journey coming from an abusive home, going from one abusive relationship to another, surviving a rape in 2004 by a "friend" and much more. It is a very deep and very personal journey. I wrote it as a therapeutic medium for myself, but also in the hopes that it would inspire and encourage other survivors.

A Guide to Survovrhood. This is a workbook designed to help survivors heal, and find peace in their hearts, and to move forward with their lives. There are various exercises aimed at tackling the various issues that survivors are faced with. It is a wonderful tool to aid in the healing process.

You can purchase one or both books at http://astore.amazon.com/thrapefo-20

Coming Soon:

Secondary Survivors. This book is aimed specifically at friends, family, and loved ones of survivors who are also deeply affected by sexual assault/sexual abuse. This book discusses the various issues that secondary survivors face, as well as how to handle situations when their loved one is experiencing flashbacks and panic attacks resulting from PTSD. This is a very informative and healing tool for anyone who has been touched by sexual assault in any way. Due in late September 2008!

The Strength of a man.
This book is aimed at men who have been sexually abused and sexually assaulted. Male survivors face many issues that are specific to them. This book discusses those issues, and helps men to find healing and closure on their assault. Due in late October 2008!

A Man's Guide to Survivorhood.
This book is a companion workbook aimed at further tackling the issues that male survivors face. This is a workbook designed to help male survivors heal, and find peace in their hearts, and to move forward with their lives. There are various exercises aimed at tackling the specific issues that male survivors are faced with. It is a wonderful tool to aid in the healing process. Due in late October 2008!

We have several more titles coming out soon, so stay tuned!!!!