The sun will come out tomorow.

I know I promised more detailed posts on our August adventures, but first I there are a few things that have been on my mind . . .

1. I'm thirty-three years old and I will be in pain everyday for the rest of my life. I will wake up in pain, move through the pain (when possible), and then go to sleep with my pain. Each morning the first thought that registers in my mind is, "ouch". I am SO tired of being in pain and having to find a way to live as normal a life as possible - I want to have fun with my family/friends, I want to work to contribute more to my family, I want to ride roller coasters and horses, I want a break from this pain, I want to be better. I don't sleep well, due to pain and nerve/brain damage I never reach REM sleep which is the deepest, most restful stage of sleep. I'm just getting tired. I know it seems like I am so positive and appreciative about my life, but even I have my moments when it all seems hopeless and impossible.

2. Monday morning Logan woke up to the sound of me puking up my undigested dinner from the night before. It was early, and I didn't think he was awake so I used his bathroom since my husband was in our shower. He was awake, he did hear me, and it makes me so sad. . . Logan is aware that most mommas do not have brain surgery, come home multiple times with several staples holding surgical wounds closed, or puke undigested food from dinner the night before. He knows when I'm hurting more than usual, he knows when I can't eat because I'm nauseated, he has seen me in the hospital connected to all the tubes and wires - all of these things make my heart hurt. This is not the life I wanted for my son. . . I think most all I want him to not have to see his momma sick anymore.

3. There is a stigma with being a chronically ill, legally disabled, pain patient. (Now, you need to know I am no longer on any of the really "good" pain meds and I no longer see doctors that are at pain clinics or specialize in pain treatment - some would not classify as a pain patient anymore. I do not like pain medications, or any medication for that matter.) Sometimes when I'm at family gatherings politics may come up and in the past comments have been made about whether or not US citizens should have to "pay for other people's lives". There have been many instances of similar conversations, but I think you get the idea. My point is that I worked as long as I physically could - when I got sick I had been to school, built a business, gotten married, built a home, and started a family. I did EVERYTHING I was supposed to and my life literally fell apart when I got really sick. I didn't do anything to cause my disorders, but I have been treated like a lower class citizen by several people because I don't have a job, or I am on medicare. When our lives fell apart and a lot of our remaining income went to medical care/treatment it was my doctors that encouraged us to apply for Social Security Disability. (By the way, we were twenty-four and twenty-five years old with a one year old baby.) I don't think we had a choice, and I don't feel bad about taking it, even though some out there probably think I should. I guess what you should get out of this is that you don't know what you would do when your life disappears and your future is forever changed. You don't know what its like until you are staring in the face - I've always felt like heart surgery, cancer, brain surgery, and anything lifelong or terminal are kind of like exclusive clubs . . . you just can't know what is really going on inside until you join one. Try to remember, this is not an equal opportunity world, and some of us got the shit end of the deal.

4. When you see me, please do not assume I am healthy or feeling good because I am pretty and wear a smile on my face. One of my doctors, the horrible one that left me without my pain patch cold turkey, once said, "you just LOOK so healthy, its hard for my staff to understand." I will never forget that statement. If nurses in a neurological office thought I was too healthy for the level of treatment I was receiving, then what were people that didn't have my chart and a medical background thinking? I look this way because my body stopped digesting food properly and I have to maintain some level of physical therapy to strengthen my muscles so my degenerating joints/discs have more support. Not to mention that gaining weight is not an option, according to my many doctors it would triggeran array pain, back, and joint issues. So, I am truly sorry if I "look healthy and happy", but I choose not to let the whole world see me vulnerable and in pain. . . even though that is who I truly am.

Well, sorry for being such a Debbie downer, but sometimes this is how I feel, sometimes it is just too hard, and I'm trying to be honest about my life. Don't worry about me, I'll get up, do my physical therapy, and put on a happy face. The alternative is to lay here, feel the pain and nausea, feel sorry for myself and stay miserable while life passes me byand I just can't let that happen! Have a good day, and thank you for reading my venting - I'll try to be a little more upbeat next post!

Have you seen my shoe?

Okay, confession time - I have been making beautiful scarves, and several people have wanted to wear or buy them. I want to start an ETSY page, sell them in a boutique somewhere, or start dyeing dresses, but with my health I worry that it will all fall apart again.

I feel like I'm constantly waiting for the other shoe to drop. Throughout my youth I had many medical problems, and several symptoms including pain, but I still worked, played, and was very active. It was after I had started building a massage business, gotten married, and had a one year old that my symptoms became so severe I needed brain surgery. I had a wonderful husband, beautiful son, a home of our own, a blossoming business, and our friends/families around us all the time. . . literally everything I had ever wanted. Obviously having lots of money, or a house on the lake would have been nice, but I had everything I REALLY wanted. I was a massage therapist working with chronic pain patients, I know it's ironic, I scheduled sessions around my family and was able to stay home with Logan when my husband worked. We had just built a house in a town close to our families and Logan had just turned one...then, it all stopped. My pain level skyrocketed, my stomach stopped digesting food, and all my other symptoms went crazy.

Most mother's spend their child's second birthday celebrating, I spent Logan's having brain surgery in NY. (I'll tell you the story of that day in tomorrow's post.) My recovery was long, and hard. I wasn't allowed to be alone with Logan for three months, no diaper changes, no holding him - just snuggles, no bathing him, and it definitely took its toll on my heart. No riding in a car for three months, unless it was for an doctor's appointment, and then everything was extremely limited for three more months after that. I felt pretty good for several months, then my symptoms flared again. Eighteen months after my first surgery I was back in NY for number two, a cranio-cervical fusion. A similar story between surgery number two and three - sixteen months between my fusion and spinal cord detether/discectomy. I made it a whole two years and one month between my third and fourth major surgeries. So far it has been nineteen months since my lumbar fusion/discectomy in December 2009, and there are no surgeries on the horizon. . . At this point I'm knocking on wood, and keeping my fingers crossed.

Unfortunately, it seems like every time I get into a good routine, or start to move forward with my life my symptoms flare, and it all stops again. I'm afraid when I start to really put my heart into this idea, the other shoe will drop and I'll be stuck feeling miserable with scarf orders to fill and a family that needs me. I want this - I have dreamed of turning my creativity into a way to help support my family. Massage therapy is never going to be an option for me again, and working in a conventional setting is difficult when you don't know what days you'll be puking, or in severe pain. There is a reason I've been legally disabled since May 2004, and none of my doctors expect my situation to change - ever. So, this plan makes sense to me. . . I can sit on the couch to tie the scarves, and the dyeing can be done when I am physically able. It sounds like a good plan, but so did my massage therapy business. I'm scared, frustrated, and unsure what to do next.

As usual, I am trying to stay optimistic. I have been able to stay off twenty-four narcotic coverage for three months, and have had reasonable pain control so far.. . my pain level on a scale of one to ten is never a zero, but on a good day is between a one and three. There haven't been any hospital visits due to pain yet, so I'd say it is going well. I use physical therapy, ice, TENS unit, Theracane, meditation, yoga, and meds to keep my symptoms from being out of control, but nothing makes me feel free of pain. What do you do when all you want is a "normal" life, but your body won't allow it? How do you plan the next day, let alone a new business? I don't know what to do, think, or feel. I just want to be able to move forward and not worry that tomorrow I'll be in so much pain I can't even think straight. This is my life, I'm accepting that, but I don't want to feel trapped by my disorders - unable to do anything outside of caring for myself and waiting for the next flare up. (Big sigh.)

So, now that you know my little secret and I've allowed a little time to wallow in self-pity, it is time to stop whining and focus. Its time to decide how to move forward from here and what is the best path - do I proceed with Threads To Dye For, or just make scarves as gifts and for fun? What will benefit my family most, what will make me happy long term? These are the questions I have to ask myself, these are the questions I have been asking myself. . . I think I know the answers, but a little extra thought won't hurt. Hopefully you'll keep reading my blog to see what happens next!

Please, feel free to email me anytime with questions, concerns, or opinions at Zipperhead1978@gmail.com. Obviously I'm not shy about my medical situation, so don't hesitate to ask anything related to any of my disorders or surgeries. Knowledge is key, and over the years I've gained a lot of it when it comes to my medical issues.

To dye for

I have loved Jerry Garcia since I heard my first Grateful Dead song when I was fifteen years old. I love live music, good guitar, and laid back people. I also love tie dyes:) I love to wear them, I love make them for me, and I love to make gifts out of them. However, as I got older I found some people see tie dye and think, "damn hippies." I started wearing less tie dye and more "grown up" clothes. Over the past few years the Bohemian look has come back into style, which means its not just for hippies anymore. I have started tie dyeing again, but not the many colored, crazy designs you see at farmer's markets. My colors/designs are bright and fun, but more subtle than traditional tie dyes. I've been making towels, shirts, and beautiful scarves. It gives me a sense of accomplishment when I'm looking at my finished product and know I made this piece of wearable artwork.
Being disabled and in constant pain is hard, frustrating, and monotonous. There are so many days I feel like life is just passing by me. Sometimes it is as simple as I'm in too much pain to function at all outside of Logan's care, so I spend as much time as possible laying down and get nothing done. Most days I have a few good hours during the day, am able to care for Logan, make dinner, and hopefully at the end of the day I feel up to giving my husband the attention he deserves. Several days it is somewhere in between, I don't really accomplish much, but my son and husband get my affection, a hot meal, and quality time with me. This is not the life I had planned, or wanted, but it is the life I have. I wanted to work hard everyday to love and support my family, I wanted a clean house, and lots of babies. At the end of the day I want to feel like I accomplished something, but that is not the case on most days. Its not about money, I feel satisfied with the unconditional love of my family, and the little joys in life - dark chocolate, snuggling up to watch a movie on a rainy day, loving on my pooch, an afternoon on the lake, a kiss from my husband.
The realization that I'm coming to is that I may never have the perfectly clean house, all the babies I want, or a full time job. I am also realizing I can feel good about my skills as a mother, wife, friend, and creative woman. I love photography (all the photos I post I took), sewing, writing, tie dyeing, and all sorts of other artsy/crafty things. Creativity can be a great outlet, but who knows maybe some day you'll see my scarves in a store near you! My life may not have turned out how envisioned it up to this point, but I can't help but dream that the future holds the best part of my story;)