My life as a mother, wife and zipperhead.: chronic illness

Jul 10, 2012

Really real

In the past two months my neck/base of my skull have been awful. I woke up one morning, rolled over in bed, and my neck started clicking, popping, shifting, cracking, and feeling like someone kicked it. I called my primary care physician for an xray order to see if any hardware was broken. Then, we contacted my local orthopedic surgeon and after a CAT scan my fears were confirmed - I need a revision on my cranial cervical fusion. We tried injections with nerve blocks and steroids with no positive effects. I restarted physical therapy/cranial-sacral therapy, but this is beyond the help of all these modalities. Evidently my NY surgeons left the two titanium fusion rods two levels longer than the vertebrae they secured the rods to with screws. Now, six years later, the bottom of the rods are to close to my C-6/C-7 restricting motion, rubbing the vertebrae, and bone is trying to form between vertebrae and the rods - in other words, the clicking and popping noises in my neck are metal and bone hitting each other. To top that off, my left C-1 screw is protruding out the back of my vertebrae into "vessels". This seems to be causing odd shifting sensations, "creeky" hinge noises, cracking, pain, and squirty/bubbly sounds along the occipital ridge/base of my skull.

In the past few days I've realized my life is about to get really real - again. People walk through life everyday without real problems, true stresses, or issues that will truly effect their life long term. So many of us create the majority of our stress and anxieties by making poor choices, over reacting, being negative, or treating others badly. Sometimes its hard for me to have sympathy for people when they could easily alter there behavior and fix the problem... some of us aren't so lucky. It is hard to describe what it feels like before major surgery when you've already had several and know you'll have more in the future. The anticipation of the upcoming procedure mixed with the memories of painful past experiences leaves me anxious, stressed, and thinking about how long I can ignore the whole thing! I'm in the process of deciding who will do the surgery and where they will do it… Do I need to go back to NY? Did my NY doctors make a mistake when they installed my cranial cervical fusion hardware in 2006? Is any of my "residual pain" actually do to poor screw placement or rod length? Can my amazing, local orthopedic surgeon do the surgery here in IN safely? Should I get another opinion from another Chiari specialist? If so, who - an Indy doc, the renowned specialist in CO, or a doc in Chicago well known for his Chiari work?
Its just gotten so complicated. Three doctors agree, so far, that this is necessary surgery. They also agree it will not be an easy procedure for me. My surgeon will have to remove the left C-1 screw and right C-5 screw, plus shorten my two titanium rods by two vertebral levels. All of which is lies snuggly under layers of muscle, scar tissue, arthritis and a solid fusion. . . Did I mention I also have a large area of cerebral spinal built up at the base of my skull? And that my connective tissue disorder makes healing more difficult? Like I said, its gotten very complicated.
The more I talk about it or think about it the more real it seems. I'm scared. I'm sad because this may rule out any chance of a baby. I guess all I can do today is focus on the current task and worry about tomorrow, tomorrow. This surgery is inevitable, but I'm not in a hurry. My family and doctors seem to disagree, so we'll see how long they let me get away with ignoring the situation and concentrating on Logan/I having a great summer!
I'll update once I have more information- I'm waiting to hear back from my NY surgeons after they view my latest CAT scans. Any prayers or good thoughts you can send my way would be appreciated. Thank you and I hope you're having a good day!

Jun 15, 2011

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.

May 19, 2010

I forgot the #@!%^ hat.

I know no one is perfect. I understand we all have our moments. The moment I remembered that I forgot his hat I felt like my heart sink. "Hat Day" in first grade is a big deal - a VERY big deal, and I forgot his hat. I know, Logan had some responsibility in this, but on this morning our house was not a "normal" house. . .
Logan woke at 7am, and I was already in the bathroom - puking up last nights dinner. When I was done, I told him good morning, laid next to him as he watched AFV, and waited for the next wave of nausea to hit. (Unfortunately this is happening more often again.) Sure enough when I got up to get his clothes and let the dog out, I had to make a pit stop for another round.
This cycle continued through breakfast, lunch packing, and so on. Thankfully Caleb took Logan to school, and went back to bed - exhausted, nauseous, and in pain. Very little helps when I am at this point, and I do everything in my power to get back up and move on with my day.
So, how is a seven year old supposed to remember his hat when his momma is running to bathroom every fifteen minutes to puke? Logan is very smart - too smart, and he knows exactly what is happening, he knows I am sick. . . sick in a way that has effected his whole life. He doesn't know any different, so it is all normal to him. Which is why my heart sank so far when I realized, I forgot his #!@% hat. That's all he needed from me that morning, and I couldn't give it to him. I was scheduled to volunteer for Book Fair with the PTO at Noon, so I took his hat to him when I went to the school.
I get that it is no big deal - just "hat day". When something so little means so much, and I can't even get it done because I was sick that morning. . . its a big deal to me. This happened a week ago, and I just couldn't get it out of my head. My son makes straight A's, leads his grade in all academic subjects, is an amazing artist, is compassionate and kind. I just want to give him the support he deserves and it breaks my heart when I let him down. I guess I will have to let go of being the perfect momma - I am sick, and that is just part of our life right now. Some things are much harder to accept than others, and knowing my illness effects my ability to be a mother is the hardest thing yet.