Within Reach…

What do we do when neither she nor I can reach something?? Work together because everything is always within reach when love stretches the possibilities! The only thing that’ll hold us back is US! We make a great team!

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Letting Go of “I’ve Got This!”

For so long, I’ve prided myself on my independence, on my ability to remain living alone with my child, on my capacity to raise my daughter with little outside help. I think having so many movements and physical activities stripped from me has given me a higher regard for that which I’m still able to do. I revel in being able to do things for myself whether that be larger-scale household chores like laundry or smaller things like opening doors for myself. I often tell people in public who try to be helpful (when it’s not needed) that “I’ve got this.” It’s almost been a mantra of mine since getting sick and relearning life and how to live it. No matter what I may look like on the outside, the inside of me is fully functional with a raging ego! Haha!! Using a cane? I’ve got this! Walking with a rollator? I’ve got this!! Self-propelling a wheelchair? I’ve got this!! Driving around in my power chair?? Yep. You guessed it! I’ve got this!!

However, recently, many activities of daily or weekly life have become either quite difficult or impossible for me to accomplish. Laundry has piled up – dirty laundry to be done (because it’s difficult to navigate the 2 steps up & down into the garage, tiresome and painful to complete this task and hard to take clothes out of the top-loading washing machine and front-loading dryer) and clean laundry to be folded (because this also causes a great deal of pain and is taxing on my body, leaving me feeling drained of all energy). My kitchen needs stocking, but going to the grocery store by myself is nearly impossible unless I’m buying only one or two small, lightweight items. I haven’t cooked a meal in weeks because my kitchen isn’t accessible to me so I’m required to stand to prepare food – standing can now only be done in short 2-3 minute periods and even Hamburger Helper takes at least 10 minutes!! Even dishes can seem insurmountable – yes, I can sit on a stool and wash them, but this, too, seeps energy from me and hurts my arms, hands, shoulders and neck (no, I don’t own a dishwasher; there’s no place to put one in any case).

I have a friend that comes and cleans. She makes our beds as well, since I’m unable to do so. But, I’m slowly realizing I’m soon going to need more than that to continue living alone, raising my child. One of my friends helps me grocery shop – she pushes the cart, gets items that are out of my reach and picks up things that are too heavy for me. I always feel loathe to ask her for assistance, but it’s coming to a point where I’ve got to get over that.

Lately, I’m realizing I may not “got this” anymore after all. Weeks ago, this prospect scared me. It left me feeling weak, needy, burdensome and worried about my future. Today, out of nowhere, came the thought that letting go of my independence is being the best mom for my daughter. If I want to continue to raise her, I must admit I need the help… and I must accept that help. Not only will it allow me to raise my kid, but it may teach her to ask for and accept help when she comes to need it in her future. She may learn to accept her circumstances much easier than her mom, who balks at admitting I can’t make a bed!! If I want to live alone with my little girl and raise her to the best of my ability, I must do so with outside help… and that’s okay.

I once heard that no one is ‘independent;’ we were created to be ‘interdependent.’ I think I’m beginning to understand that now. Maybe I don’t “got this”… but maybe there’s a WE who does!!

Why is Mama Modified? (Getting to Know Me)

There’s a saying a like: I plan; God laughs.

 

This certainly feels applicable to my life. I had everything planned out; thought I knew the direction I was going; assumed my goals were attainable through hard work and dedication; fancied myself the director of my own show. I was finishing up my thesis for a Masters degree in Early Childhood Special Education with an emphasis on the medically-fragile/low-functioning population. I was teaching for the public school system in my city as a Special Educator. The unraveling of the thread of my future began with a headache. I’d never been prone to headaches before, even when sick. The headaches persisted and worsened. Every day brought on more pain. Over-the-counter medications were ineffective in treating the throbbing that traveled from the base of my neck to my eyes. Then came the pulsing sounds; a constant whooshing noise that matched the rhythmic beat of my heart (I would later find out I was hearing my own spinal fluid sloshing around in my brain. Pretty frightening!). I had no idea what was causing this new development and was already beginning to make the rounds of various doctors and specialists to try to find out what was happening to my body. No one had an answer for me, even after CT Scans and MRIs, all of which were normal. I was given multiple narcotic pain medications as the headaches increased in intensity to what was assumed to be migraines. Even taking dilaudid and morphine did nothing to lessen my agony. Then came the day I awoke without peripheral vision nor the ability to turn my head at the neck. Over the course of 2 1/2 months, my condition worsened; my speech became slurred as if I’d suffered a stroke; movement of my limbs was difficult; my tunnel vision regressed to mere pinpoints of sight as I stared at the faces of doctor after doctor, begging for a diagnosis, a treatment, an answer.

I’d already taken leave from the school where I taught and had stopped writing on my thesis. Finally, the night came when I went completely blind. That was the turning point. I was taken to the emergency room of a local, well-known hospital. Again, the ER staff took a CT Scan of my brain which came back with no abnormalities though what I was experiencing was far from normal. The director of the ER was called in. Although it seemed that he was the only new person to enter the room, I would soon realize that God had stepped in as well. This doctor had written his dissertation on an extremely rare neurological disease called Idiopathic Intracranial Hypertension. He performed a lumbar puncture to gauge the cerebral-spinal fluid pressure – the only diagnostic tool used to recognize IIH. Normal CSF pressure is between 8-12; mine was 49. Six vials of spinal fluid were drained via the LP, and I immediately gained tunnel vision back, though it would take an additional 1 1/2 years before my peripheral vision returned. I began seeing a neurologist and neuro-ophthalmologist and taking a medication that would help my body rid itself of the fluid. After one year on the medicine, my IIH went into “remission.” However, my journey into a new way of living was not over.

There is no known cause of IIH nor is there a cure. It affects only 1% of the world’s population. For a reason unknown to the plethora of doctors and specialists I’ve seen over the years, after 28 years of working efficiently, my body stopped absorbing its spinal fluid, causing it to build up in and around my brain and spine. I was fortunate to have responded to the medication; to not have suffered a seizure or stroke due to the increased spinal pressure; to not have had a heart attack as my body worked over-time to compensate for the increased pressure in my brain and spinal column; to gain my full sight back with only a tiny blind spot in the peripheral of my left eye; to not have required surgery on my eyes or to place a shunt in my brain to drain the excess fluid; to not have died. The lasting effects of the IIH for me were to be a physical regression of mobility, coordination and balance. At the time of my diagnosis, I was a heavy drinker and was actively engaged in an eating disorder that left me malnourished and dehydrated – a combination of maladies that my brain and body simply could not deal with. Shortly after my initial diagnosis, my spinal column began to deteriorate; a disorder that mimics degenerative disc disease. I’ve since been diagnosed with several other neural-muscular disorders as well as neuropathy in all four limbs. Over time, I’ve lost (and will continue to lose) my ability to walk and perform various other physical activities that my once healthy, able body was capable of.

I had to withdrawal from the graduate program a mere 3 months prior to graduation. I’d been so close that my name was already printed in the programs for the ceremony – a ceremony I did not attend. I became dependent on government assistance; something I’d never foreseen myself doing. I had a home-health nurse and physical therapist. When I was able, I went outside my home for PT and struggled to walk again. I actually walked for 15 months without the use of any aids until I started falling again. A sort of backward cycle began – I’d gone from wheelchair to rollator to crutches to a cane and now was reversing the order; in need of a cane one day and before long, back on the rollator before sitting down again in a chair. I now use a power chair about 80% of the time. The cane I use to walk around the house and travel short distances has a wide foot-base to keep me as steady as possible. I’m not able to self-propel any longer but keep my manual chair for emergencies.

My plan was to become a teacher. Instead, I’d unknowingly been a student of the children in my classroom. Because of them, I’d witnessed strength, determination, motivation and perseverance and knew I could apply it to my recovery. I’d also learned about all the different programs, services and assistance for the disabled community. I’d helped children and their families modify their environments in order to be more accessible and accommodating depending on the level of care needed.

My plan was to live out a life I was in charge of. God simply smiled and showed me how to be grateful for every moment and each movement; to rejoice in the things I’d once taken for granted; to rely on Him instead of myself. I’ve also been blessed with an amazing daughter! Before age 28, had someone asked me if I could live my life as a disabled person, I would have said, “No.” Had anyone asked if it were possible for me to be a disabled parent, my response would again have been, “No!” But God would’ve giggled and said, “The answer is yes! You can do ANYTHING with My help!” And that is the correct answer!!

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*Post can also be read at: https://rollingwithspinabi7.wixsite.com/take2

I wheely need an icon!!

I have an android phone but wont drop the brand name nor the phone carrier I use in this post…

Several months ago, my phone updated and afterwards, there were tons of more choices of icons I can send in my text messages. I can now choose from 6 different skin colors when giving a friend a “high-five” or “thumbs up” or show that I’m “clapping” my hands. There are hundreds of flags representing all these different countries (most of which I can’t identify by their flag, to be honest!). There are lots of sports represented and activities and emotions. There are about 8 pages of vehicles and gay & lesbian couples are now included in the ‘people/family’ section.

With all these new, various and exciting choices there’s one thing that has not changed – there’s no representation of people in the disabled community except for the old, tried-and-true international symbol for ‘handicap’ – that simple stick-figure sitting in a manual chair over a blue background. Why?? Are we afraid?? Are we still stagnant in attitude, thought and consideration??

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What if I wanna shoot off a text about how I just took off at 6 mph in my power chair, leaving so-and-so behind in my dust? Where’s a colorful icon of a female in a wheelchair with flames shooting out the back? Wouldn’t that be fabulous!?! How about amputees? People who use crutches? Canes? Orthotics? Why are there a vast variety of cultures, religions and races symbolized but not the equally vast plethora of disabilities?

I’ve got no answers. Only gripes. No solution. Only grumbles. I would tell you that I’m ready to roll over somebody’s toes, but I wouldn’t be able to include a pic of a wheelchair rolling away from a person grabbing their foot in obvious pain!! 🙂

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!!

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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!! 

 

Rising to the Occasion

I had a bed delivered today and faced that awkward moment again:

I answered the door in my power chair & escorted the men down the hallway, showing them which bedroom to put the new frame, box spring and mattress in. Upon entering my bedroom, I realized a trashcan and my PT wedges would be in their way. I said, “Oh, I’ll get those things. Let me get up.” The two guys looked at me with confusion practically dripping off their facial features and one of them spoke up, “You’re able to walk?” That question, that moment in time when I’ve distorted someone’s perception of me simply by using one of my mobility aids; that feeling of being weird, being an oddity to others because they assume I can’t walk, can’t stand up at all and I’ve fooled them. It is always awkward for me, just as I assume it’s awkward for the other person, who may be feeling some shame or guilt for pre-judging me, making me less able-bodied than I am.

I have a shirt that says, “Don’t Make Me Get Up!” It’s a joke – I often revel in the hilarious, the humorous about my situation. It helps me get by. I sometimes make people uncomfortable with my light-hearted, silly comments (“This is how I roll,” “Walking is SOOOO overrated!!,” “Does this wheelchair make my butt look big?”). I know my prognosis and have accepted it. There’s nothing else I can do. Well, I suppose I could wallow in self-pity or bask in the Why-Me’s? but to what useful purpose?? I’d only be harming myself. For me, I view each movement I make, every step I take with gratitude because I’ve had to learn most of it again when I first got sick and I know I’m slowly losing it all once more with no chance of restoration. My faith keeps me going, whether it be slowly gimping along on my legs or zooming down the street in my power chair with my daughter running beside me. I know that He has a plan for me and He loves me very much – His plan for my life is perfect for me and it is good, too. So, what do I have to fear? Why would I need to stress? What would I gain from feeling sorry for myself?

I know there will be a day when I won’t be able to stand up or walk. I wonder if awkward moments such as the one from this morning will still be a part of my life. Most likely, they will, but for other reasons that I can’t foresee. And that’s okay because today, I grabbed my cane, got out of the chair and moved my own trashcan & wedges. I was happy to do so, simply because I could do so… which completely alleviated the awkwardness!!

Letter To My Chronic Illness

Dear IH,

I need to break things off with you. While I realize that we’ve been together now for 8 years, I’m feeling like the time has come for us to call things off and go our separate ways. You see, the problem is your insistence on dominating nearly every aspect of my life. I can’t allow that any longer.

You demand attention by bullying my body with either headaches, migraines &/or increased cranial pressure during times that I’ve promised my young daughter that we’ll go to the park, the library or attend a birthday party. You beat me into a state of exhaustion in which the bones in my body literally feel too heavy to lift and I cannot move well nor get enough sleep to overcome the veil of fatigue which you have caused, but there’s laundry to be done & put away, meals to be cooked, dishes to be washed, grocery shopping to do, a child to bathe & otherwise help get ready for the day or night. I just can’t go on like this anymore!!!

It’s maddening to be going about my day, feeling wonderful and soaking up all the joy that life has to offer and then BAM! You come along with stiffness, pain, fatigue or a head full of mess and try to ruin everything – not just for me but for my daughter, too, which is unacceptable!

So, you see? I need us to part ways. I understand there’s no cure & treatment is only partially satisfactory, but you’ll just have to leave me alone for now. The doctors say your initials stand for “Intracranial Hypertension” but I know better:

IH really means Insistent Hovering, Impairing Happiness, Inconvenient Hassle, Interrupting Harmony, Interminable Hindrance.

I am not fooled. And I want to break up. So, we’re through. We’re finished. We’re over. Excuse the bluntness of it all, but you’ve certainly not been timid in your approach with me!! I’m sure if you have a response, you’ll let me know by this evening – I’ll probably lay down to sleep and feel your disruptive tingling throughout my limbs, your devious, painful throbbing in my feet and hands. You may even cause my pressure to rise to the point of hearing my heartbeat as my eyes jump to its rhythm.

But, whatever you do, just know that you don’t get to win. You might not be done with me, but I’ve given you the last of my worries, my fears, my pains, my aches, my sleepless nights and bedridden weeks. I’m moving forward with focus on the ones who treat me right, who make me feel good and who show me how much I’m loved.

Take it easy (on me!),

Lylly

 

 

This Puts the “Dis” in My Ability For Sure!

I woke up this morning with a Disability Dilemma!

What do you pick up your picker-upper with??? UGH!! I had to call in the Able-Bodied on this one!

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