Rollin’ Forward

So, welcome to my new website! I’m really excited and hope that you as readers/followers and I will gain much from this site.

The decision to begin a website came about as another transition I’m making into the world of disability. Since becoming sick 8 years ago, I can’t tell you how many times I’ve cycled through the grief process. I’ve had to adapt to and accept each new phase of my illness & disability as my body’s steadily declined. I’ve coped through humor, faith and hope and am now entering a different phase – one of desire to educate & advocate, giving another voice to the disabled community to promote awareness and gain accessibility.

As a disabled parent, I find there are limited resources for my population. Public places that I’ve needed or continue to need access to do not meet ADA requirements due to what I consider to be inconsiderate & insufficient regulations. Some places claim ADA accessibility but are not, leading me to believe that businesses are not strenuously monitored or regulated.

My future goals are to advocate for stricter and more suitable ADA laws by lobbying at the Congressional level. I’m also looking into the Miss Wheelchair Tennessee pageant, as that would broaden my platform and help me reach more people.

I look forward to continuing to blog about being a parent with special needs and am excited about using this site to further awareness & education for all of us in the disabled community! Feel free to share your comments with me!! And, thank you for visiting my site!!!

img_0569

Please Welcome Back… Lazy Lylly!!

Oh, my! Not a single blog post since February??!!?? Lazy Lylly at your service!!

And, it’s not like tons of things (internal monologues, actually) haven’t been running through this nutty head of mine!! I could’ve posted plenty in the past 5 months, but alas, such is the life of a lazy person!! Every time I thought of a new blog to post, I told myself I’d take time for it tomorrow – and you know exactly what the saying is: “Tomorrow never came!” Well, it is TODAY! And, I have something to say; not much, only a little, but something nonetheless.

The past 5 months have been wonderfully chaotic, as only a single-mom-with-a-chronic-illness-and-disability-who’s-trying-to-go-back-to-work-and-still-be-involved-in-a-12-step-fellowship’s life can be!! My body has continued to regress and I’ve been back in Physical Therapy for what the doctors are hoping are only “weak hips,” though the PT hasn’t done much of anything to relieve the immense pain I’ve been in. I’m thinking I’ll have to end up having x-rays and an MRI to determine what is really going on – Oh! The joys of being scanned and shoved into high-tech machinery!! 

Because of the pain, I’ve been having to use my power chair nearly 100% of the time while at home and have even taken it to certain events so that I could allow my body to rest and relax, reaping more joy out of the occasion. I still refuse to take any narcotic pain medication, so using the mobility aids at my disposal has been the most prudent thing I can do at this time.

I’m still not working yet, which has been a cause of frustration. But, I’m trying to have faith that God simply has something perfect for me up ahead and I have to allow not only His will to work in my life but His timing. I’m saving up slowly but surely for a wheelchair accessible vehicle to transport my power chair (VocRehab denied a conversion for me), since it seems as though I may end up in the chair sooner than I had planned – although why I even bother to “plan” for a prognosis not even the multitude of doctors and specialists in my life can give a definitive time-frame for, I have no clue!! Guess it’s a part of my insanity!!

On a truly upbeat, don’t-wanna-miss-this-ray-of-sunshine, positive note: I go back to my neuro-opthamologist in a month and will find out if my IH is back in remission! I think it is and he thought at the last visit that it seemed to be looking that way, but wanted to be 100% sure. So, in a few days, I’ll be going back to the original dose of Diamox that I was on before I got so sick again. Based on how my body/brain react to that change, we’ll know if I’m in remission or not. Prayers and positive vibes my way would be much appreciated!!

Another awesome bit of news is that I’m only $1,700 away from my fundraising goal in order to go to team-training with my new Service Dog!!!! I’m so close!! I hope I can be in one of the 2017 classes and bring my new furry family member home next year!!

IMG_4242 (2)

I will make every effort to post a blog before another 5 months go by!! My ego insists that the online community cannot survive without news about my life or knowing what my opinions, thoughts & feelings are about certain subjects!! Until I post again, I wish you well! Thank you for reading and for being so patient with me!!