About Me

About Me

I pray each night while lying in bed that sleep will come and wrap me in its warm arms. I pray that this night I will get the precious hours I need to feel what I consider to be “normal”. What is normal? It varies from person to person, from day to day, from place to place. My normal consists of a constant roller coaster of ups and downs, with me just doing my best to ride out each turn and dip. I hope to sleep at least four uninterrupted hours, and celebrate if on that rare occasion I get six. Waking up tired is like being punished every day just for existing.

But let me back up a bit and tell you a little about myself. I am a 27 year old woman with a wonderful husband, two amazing fur babies ( yes they are dogs), a nice home, a great family, a few amazing friends, and I have Hypophosphatasia. Sounds not to shabby right? I’m not sure anymore, since for me there is a lot I would give up not to have Hypophosphatasia. I’m sure your scratching your head wondering what that is, or maybe you have some medical knowledge so you can kind of figure it out. Either way it’s no picnic, no fun, and one of the hardest realities I have ever had to learn to deal with.

So back to the idea of “normal”, i’ll explain what that is for me. It means when I leave the house I have my camouflage bag filled with six different “take as needed” medications for pain, muscle spasms, anxiety and nausea. If I forget it, then I have to turn around even if means being late to an appointment, a concert, anything, because I can’t risk being away from my safe place with no way to deal with what my disease throws at me daily. Did I mention I am 27 years old and have four different prescription pain medications. Try explaining that to a doctor to whom you appear to be perfectly healthy. Since the early days of my disease each doctor visit was a gamble. Each time was a new chance for them to tell me that they can’t find anything wrong with me for diagnose me with one of the famous “catch all” conditions. Every visit was a chance for another doctor or medical professional to treat me like a drug seeking twenty something. At this point I also failed to mention my mother has been a drug and alcohol abuse councilor for 40 years and I myself work in the medical field. So for me addiction is a scary thing I stare in the face all the time. My favorite visits were the times I was so exhausted from not sleeping, and in so much pain I was barely functioning, and yet maxed out on extra strength tylenol and ibuprofen I wanted to puck, but the doctor told me I was doing everything I was supposed to and to try to take it “easy” for a few days. I wanted to scream and cry and through the doctors into the fiery depths of hell on those days because I was completely and utterly done with the pain but because of age and appearance, I didn’t what “qualify” for prescription medications. So home I would go, and cry my face off I would do, then dip into the small supply of mediations I stashed away over time to relieve my pain, if only for a few hours.
To many people my age having any kind of prescription pain medication would be awesome. I say awesome in terms of fun because who doesn’t like a good out of body floaty experience every now and then. But I would do anything to throw them away and just wake up each day with no pain, feeling healthy, and like the vibrate young woman I dream I wish I could be. On many occasions I have become so frustrated with my situation I have basically said fuck it and gone off all pain medication entirely. I’ll make it a few days, maybe a week, maybe more, but the pain always finds me again. I get mad at the pain, ask it why me, are you real, am I a wimp who just can’t handle it? Sadly pain never responds to me, it just exists. Over the years I have developed several habits that are characteristic of an addict, but I do not define myself as one, and yet that is what others see me as. How do you talk about your pain with someone who can’t see or feel what you do, and as such does not understand? At this point after nearly ten years I am tired of defending myself, of trying to justify why to people who are unable or unwilling to empathize and understand.

That is the one of the worst parts of this disease. It’s so rare that I went years without a diagnosis and as such developed a mental loop in self preservation. The loop would be periods of time accepting the need for pain medicine to function, taking it, being super productive (for me anyways), then getting frustrated that no one new what was wrong with me, then telling myself there was nothing wrong with me it was in my head, crashing back into pain as I took myself off pain meds or forced myself only to take them when I had no other option. Then finally succumbing to the exhaustion and frustration of having to use all my energy to manage my pain meaning I could spend a whole day doing very little and still be exhausted. Round and round this loop would go, month after month and year after year. After awhile I lost count of the number of doctors and specialist I had seen in hopes that one of them would validate my pain. Hours were spent online researching diseases, one at a time, common and rare, trying to find something, anything that might explain how I felt. I started to self treat the best I knew how. I went to the gym, saw a physical therapist, went to the chiropractor weekly, and invested in massage therapy as ways to relieve the pain without having to take yet another pill. Even with all the extra therapies I still would have periods of “why me”, accompanied by a break down and epic cry session, followed by an emotional hangover. Some day I would love to take the bag of pain medicine I carry everywhere and throw it away. I want to feel like I can do the laundry and the dishes and workout and not be exhausted from every day activities. My goal is to be a productive and helpful part of society. I want to be a good wife, and an active daughter, and good worker, but reality is some days I feel like a burden on my family and friends.

Each day is a different struggle, but each struggle will bring me closer to my goal to redefine what I call normal.  The more time that goes by the more I learn about myself, how to manage, how to help, what to do and so one.  I work hard to surround myself with medical professionals that are willing to work with me and my disease to not only survive but to thrive.  Since my diagnosis I have learned to accept it as a part of my life.  The attitude is despite being “sick” and “delicate” or “disabled”, I can do anything, there are no limits, I just have to do things a little differently sometimes.  Because of this I have adapted the identity
of #nolimits, and that means that there is no place I can not go, no activity I can not find a way to participate in, and no limits to what I can achieve.