*UPDATE*  After reading this quick update,  Please continue to read  (below) and donate and share with everyone you know!!  I had recently posted an update stating that I was off all my treatments thanks to my doctor who was only thinking with her pocket book or rather lining it with$100 bills,  than remembering the oath she'd pledged in medical school to heal all those  in need that she possibly could, regardless of they're ability to pay...however, thanks to an amazing friend and mentor, one who shares many of my passions (teaching, conservation, etc) but also unfortunately my disease and therefore a unique understanding of what I'm going through...well she was able to secure me some medications (my chemo) to hold me over as I look for a new rheumatologist, a hard specialist to find, but again this wonderful woman has managed to find one of these as well and I am working on getting in to see her. So thanks so much Cat. !!! I will owe you a huge favor. €~)»


Below is not just a story...it is my life, simplified. I appreciate your time and support.

BEGIN READING CAMPAIGN STORY HERE. :-)
For most people asking for money is never easy; for me... asking for help of any kind is probably one of the hardest things I've ever had to do.

From the time I was just a kid and my parents started telling me how grown up I was, that I was such a  self-reliant child, I've always done things by myself, for myself, not even considering the idea of asking others for help. My mottos were "make do or do without" and "if it doesn't work, improvise."

I was an energetic kid who could swim before I could walk, that  turned into an active young person who traveled, hiked in and rafted out of the Grand Canyon and did the 60 mile, 3-day cancer walk. Even when I began to experience severe pains in my legs and right hip, I told myself it would go away...I knew that if I wanted to do something then it was up to me to just go do it, whether it was snowskiing, becoming certified as a FFT2 Wildland Firefighter, surveying North Atlantic Right Whales out in the middle of the Atlantic Ocean or just exploring, hiking trails in the U.S. and abroad. I had a passion for nature, equaled only by an even stronger drive for sharing that passion with others. I always knew I would be a scientist and a teacher. I earned my Gold award in Girl Scouts, the equivalent of becoming an Eagle Scout for a boy, by the time I was 15 years old. Even the pain that I now felt frequently enough in my legs and back, that on occasion incapacitated me, leaving me confined to my bed, simply couldn't dampen my spirit. Instead, on those days when I couldn't get outside or run around, I often read or as I got older, wrote my own short stories or drew my own comic strips, many that earned awards...Personally It's that part of me, my creativity, my ability to overcome boredom,  my passion and my strength to go on, that I feel has made me a unique individual and memorable performer, a fun parent, a cool teacher, a  passionate conservation ecologist and activist, and well...basically everything I am today.



But back to that not asking for help thing...  Having that kind of mindset  as a young woman made for a very hard road, with my dad often remarking that if ever there were two ways to do something I always took the most difficult path. I don't regret any of it though, for  taking the path less traveled* ‌ made me tough, resilient, independant, adaptable, innovative and strong, all things that have played important parts in shaping who I am today; And for the most part, most situations,  I was able to say "I made it!" Yes I quit high school, but I also went back and ended up graduating early at only 16. I attended and graduated with honors from a community college. Afterwards I was accepted to The University of Georgia, graduating summa cum laude while earning an ABJ from UGA's Grady College of New Media & Mass Communications for Public Relations/Journalism. What still amazes me is that I did almost all of this while working full time, sometimes 2 or even 3 jobs, just so I could make ends meet and still take care of my young son as I was a single parent at the time.


So it's true, I took the long way round... During school I remarried, had two more children, beat cervical cancer while pregnant with the 3rd,  landed an amazing salaried job working for The Georgia Department of Natural Resources, Wildlife Resources Division, and started graduate school while traveling all over the state with work spreading my passion for ecological conservation. I thought I had it all and if I was tired or my lwgs & back hurting, I got really good at ignoring it.  I was pretty hell-bent on making everything work out my way...
Until it didn't.



It was then I realized something a long time coming. I couldn't do it all. I couldn't be a career woman, an awesome mom, an amazing wife, an interesting individual with friends  and interests of my own...and be sick.

One thing at a time, my life, it seemed, began to disintigrate as the balls I was constantly juggeling started to slip from my once capable hands: Laid off....couldn't keep up at grad school...no money for school, no money for bills, no money for food, too proud to ask for assistance (back then anyway) no money, time, energy or interest really to do much of anything for myself, much less with my family' or my friends. Fights became the new language in our home. Fights over the job, fights over money, fights over bills, fights over school, fights over chores, fights over fights.




OK,  so now that you know most of the history and can see that it's probably not that different from a lot of 30-something people out there these days right?. So why should you care? What makes me and my family any different? Well, you've read this far and I thank you for that. So here's the rest of the story. Hopefully you'll hear me out, stick with me until the end.

I was officially diagnosed with Ankylosing Spondylitis in 2010 just weeks after being laid off and ironically almost exactly a month after asking for medical leave from work to get more testing done for the unexplained pain and weakness that I'd had for a long time, basically since I was a kid, but that had recently become so bad I couldn't ignore it or, thanks to a bleeding ulcer, cover it up with 800mg of Ibuprofin three times a day anymore. So much for powering through. Anyway, for those not familiar with the disease you can read up on it here , but know that it is one of, it not the most serious, of the rhuematic autoimmune diseases. In a nutshell your body's cells go on attack mode, create excess bone in areas like the spine, neck and hips while simultaneously attacking healthy bone, causing it to become brittle, crumbly and prone to breaking. It is excruciatingly painful, irriversible, uncurable and eventually leaves those who suffer from it immobilized, most hunched over in pain, locked in place as the bones/joints in the spine, neck and hips become fused.

Like many with AS it took a long time for me to get my diagnosis.
The average time for most patients is 10 years . Thankfully that length of time is getting shorter due to some high profile individuals who have come forward to tell their own story about this disease, people like Mick Mars from Motley Crüe and pro surfer Shane Wehner.

I have what's known as juvenile early-onset  Ankylosing Spondylitis, 
meaning that my syptoms began presenting when I was still a kid...back when nobody would listen and I was told as many young patients are, that it was just "growing pains."
Thankfully more is known about diseases classified under Spondyloarthitis  and young  people are being treated sooner which means they don't have as much damage when they do finally get properly diagnosed and treated.

When I was finally diagnosed, at 31 (after years of incorrect diagnoses, medications that did nothing, and soooooo many people including doctors, close friends, even my parents  telling me that I was trying to get attention, that I was drug seeking, or that my pain was psychosomatic, that I'd plain made it all up....I finally found a doctor, my PCP at the time, who was also sure I was just drug seeking, but im a moment of sympathy maybe, told me that if it [pain] was that bad she'd refer me to a rheumatologist before she dismissed me.....) While upset about being dismissed, I felt at last somewhat justified, because no other doctor had told me that maybe I should check it out instead of just stopping complaining, or even what kind of doctor to see.  On my very first visit the rheumatologist watched me walk, looked at my hands and knew immediately that something was wrong. She ordered bloodwork and X-rays, not to mention all the questions I had to answer. By the time I Ieft her office I felt so relieved. Even though I knew it wasn't likely to be good news,  it was progress, someone who had listened, taken me seriously, had spoken to me like the educated adult that I was. On my third visit, I got my diagnosis along with my test results.  I was told that I  had  the bones of a 60+ year old woman and it was no wonder I hurt all the time. X-rays revealed a long list of old fractures, many in my hands, neck and spine, most I had never even been aware of.

The good news is that there are treatments, and these are giving hope to those with AS. These treatments are not a cure but they do slow the progress of the disease enough to allow for the patient to extend the amount of time they have to continue doing the activities they love, often putting the disease into periods of remission for varying lengths of time. As for thos activities, we're not talking skydiving, mountain climbing or participating in extreme sports, although hey if that's what you love, awesome...I'm so glad I've done some of those things too...But no,  what I mean are the simple things most people don't think of like picking up your child, helping them learn to ride a bike, tying your own shoes, opening a soda, walking the dog, hopscotch, household chores, brushing my hair...and now even driving a car.




All of these are slowly being taken from me...some because I can't move very fast, some because I don't have the strength or mobility anymore and some because the treatments for AS which include a low dose chemotherapy regimen in conjunction with me having low levels of hormones due to a previous hysterectomy(cervical cancer in 2007) make my bones brittle...so I litterally have to be careful that I don't break. I can honestly say it's no fun going  to the ER on Christmas Eve with a broken hand because you were playing with the kids and you smacked the credenza by accident.

The treatment for AS is usually what's referred to as a two-pronged approach and includes what's called a biologic, such as Embrel, Humira or Celebrex and then the low-dose chemotherapy, generally Methotrexate which can be taken orally or injected.  You also have to take a steady dose of  folic acid to protect your stomach from the Methotrexate, because although it is hindering the development of the disease, it's also slowly poisoning you and comes with it's own side effects and risks including the possibillity of developing lymphoma.

I take my chemo faithfully *(see above) but unfortunately the biologic, the other half of the treatment is too expensive and I had to stop taking it. It's nearly $1000 a month with insurance. About every four weeks or so I get chemo sick, meaning my body is so full of poison that it just can't take it anymore and I spend a nasty 2-3 days confined to the bed after emptying everything in my gut. I used to go longer between getting sick but what I'm thinking is that because I can't afford the other half of my treatment, that my body is breaking down quicker. I do know that the chemo is not slowing the disease down like it used too. But then that again is probably a result of not having the proper treatment.

I thank you for staying with me for this long and now I will quickly tell you what the money would be used for.

My medical bills as of the close of 2015 were sitting at $40,000 outstanding. I haven't been to see my rheumatologist in a year because I can't afford to pay what I owe her. This is troubling not just because she can't monitor my disease but because anyone on Methotrexate is supposed to have bloodwork at least once every 90 days because of it's inherent risks. Additionally I haven't been back to the gynocologist since six months after my surgery in 2007 (for the same reason) despite being told to get checked at least once a year to make sure I don't relapse. These things worry my husband and children who have watched me get weaker and weaker. It breaks my heart to hear my daughter ask when, not if I'm going to die. She understands sickness...she's lost several close family members...she wants to be prepared. I find myself pulling away, not just from her, but from everybody, because I'm afraid...I don't know what to tell them.



I am unemployed and it's not for lack of trying. For years after I was laid off I was either discriminated against for being sick, or discriminated against for being too well educated....over-qualified or under-qualified for everything. When I finally got a job I loved it, worked hard, got a review telling me that of all the things I exceeded on attendance because I was always there or gave them a heads up if I was sick or couldn't be there. I never called in until the 6th month I was there and it was because my son almost died when his car went off a 9ft embankment and again a couple weeks later when I had a fender-bender. In my 9th month I had a bad bout of chemo sickness, was told (by a manager) to stay home and later that day, while I was trying to rest in bed, between bouts of dry-heaving, and collapsing from dehydration, I was woken up by my apologetic husband to take an important call... it was my general mananger and was just calling to tell me I was fired for having too many absences (just 4 weeks after that glowing review). What about the husband you ask? Well he works three free-lance jobs...makes pretty good money, but there is only work when the season calls for it (he mostly runs camera/tech/production for sports) and even the big events like concerts and conventions can have a four-week turn around for getting paid. Even my oldest son works as much as school, band & ROTC allows...it's just not enough.

I applied for Disability services but was denied because I hadn't seen my rheumatologist in a year**(update: recently found out they wouldn't even cooperate with disabilities services because of the money I owe) and so couldn't provide enough information. I couldn't make them understand that I hadn't been because they wouldn't see me until I paid my bill... I am currently reapplying for Disability but in all honesty, I don't know if it will be any different this time.

If I were to somehow raise this money I would pay off my medical bills first and then go see all my doctors. I would apply for the Embrel Assist program which if I paid my bill I would then qualify for, and would then have a chance at getting my complete proper treatment at a reduced rate. If I am able to see my doctors then I just might be able to qualify for disability which would also help with the cost of my treatment as well help me get into a physical therapy program. The most important thing is that this money would give more time...time to be with my oldest son who just recieved his Eagle Scout award and is determined to be a lawyer. Time to see if my brilliant 11 year old son who has already written/coded his first simple video game will become another Bill Gates...(wouldn't that be cool?) Time to see my beautiful daughter dance again and live on the farm with all her adopted children like she dreams about. And time to be with my best friend and husband, to try and make up for all the worry and stress I've caused him. Time to just be with him and hold hands again and love each other. That's what this would give me...time.









I realize that times are hard for many people. I understand that I am asking for a lot. I am hoping that maybe everyone that ends up reading this will  not only really consider donating, but then send it to a friend and that if everyone chips in a little I just might get close to my goal. One of my favorite quotes is this, "No one can do everything, But everyone can do something."



I'm trying my best to teach my children about the beauty of life, and that it's okay to ask for help, that you don't always have to be the strong one. I slso want them to understand that just because you are poor/going through a rough patch, doesn't mean you are lazy and worthless, despite what some big corporations, doctors, and insurance companies would have you believe. So by helping me you will be helping them as well. I thank you for your time and hope you will consider me and my family as you go on through your day.