Hang on for the Ride!!!


I’m overwhelmed with what I have to get done and figured that this would make for a good “brain respite” break.

My Desk!

Yes, in the middle of all that. “Garden” is a reminder to me not to get overwhelmed and step back and seek peace. Thus my “break” now. I miss all of you and participating on a regular basis. But due to Hubby’s health over the past few weeks and Twinkie’s need for attention, I can actually say I’m seriously behind.

But let me try to bring you up to speed as to what has been happening:

Long Term Disability: I know it is actively being worked on at the Congressman’s office and I’m still collecting stories of divorce, cancelled weddings, financial hardship etc that was brought on by the LTD.

County Leadership Institute: I will probably have to cancel participating in for the second year for the same reason as the first. There is “no” such thing as respite for a family like ours. I’ve called over 20 organizations who can’t help us because either Hubby isn’t retired, our daughter isn’t disabled, we make too much, we can’t afford it, or we are still married. It means that I can never have even an 8 hour day away from home. This also prevents my ability to go out and speak before major organizations and I’ve already had to turn down a few.

Emergency Preparedness Fair:  Thank goodness that I participate in this project, it gives me an opportunity to feel like I’m working for a living even though I don’t. But we have already been picked up by Google Alert (try Get Ready Gwinnett!!) and a few other media resources. We are hoping to get sponsors and more notoriety for the one of kind EP fair that we’ve created where it’s the vulnerable community members that are focused on first. By the way you’ve been so inspiring that I’m desperately trying to incorporate some of your challenges into the fair. Soon we’ll be able to register vendor/sponsor type donations where funds raised will be used to help the committee reinvest back into the county (flyers, tornado helmets, weather radios and such). If you have any further ideas, please don’t hesitate! Even if it’s questions you wish you could get answered at such an event. I wish you all could come!

Hubby: Where do I begin?! We finally got his Roho cushion after 2 1/2 years. Yeah!! A miracle!! Hallelujah!! We were finally put in touch with a company who wanted to do the sale and not brush us off unlike others who used my hubby’s insurance as an excuse or PT/OTs who claimed that they had no time to take care of my husband’s equipment needs.  (And if you think that was special??!!) So the company who realized that they could help us then got us his shower commode chair two weeks later. It may not be anything much on the surface but…

…for the first time in six years….for three days in a row (even!)…he was able to take a shower in our home!!! 

This is a major accomplishment for the entire family and we are very grateful to Apalachee Medical (GA) for making this event happen!!

As to hubby’s health, I’m perplexed. I think in a good/grateful way. As you all remember he was having massively serious pain issues that were scaring everyone. To the point that we expected surgery again. In the meantime, the doctor called because another urine sample showed another infection, Klepsiella (sp?). And this time it was serious because it was showing up as a medication resistant strain — which means only an IV antibiotic would have a slim chance of treating it. We know from prior experience(s) that this day was coming. But our primary likes not to jump too quick and suggested putting hubby on a medication that has an ingredient hubby is highly allergic too. Okay…we did! (Remember we joke about Hubby being a great “white paper” crossed with being a “living science experiment”.) Well two days later, his urine looked beautifully clean and 110% of his pain was gone! No we don’t understand this!  But we are grateful because the pain stopped and he won’t need to be in the hospital. So now he’s up and running in the power chair again! Whoopee!

One other note on Hubby’s behalf: Via one of my network connections we finally found a Home Modification Program through our state that due to Hubby’s challenges he might qualify for. If that’s the case and I won’t know for about five months, we are hoping for a deck that has been reinforced to accommodate a powerchair; the deck would serve as a second exit out of our home (if there’s a fire in one particular spot in our home Hubby is trapped!), and a ramp off of the deck that would lead to the basement for tornado protection. Pray!

Twinkie:  She’s getting older and more aware and as a result I’m getting challenged with the next level of being a parent of a 5 1/2 year old. She will not eat anything but milk, cheese and bread. (I do give her vitamins but I don’t think that’s enough.) We do not allow dessert unless we can squeeze her into eating something healthy and she flat out refuses to try new food. I’ve tried psychology, starvation, treats,  etc. and getting nowhere.

At the same time now that Daddy has managed to stay home from the hospital, she wants to get out. It was tough trying to do this through all of his pain. So in one week I gave up my office time and took her to the library, a play date, a Home Depot class for kids, Pawfest (doggies!), and shopping. Home Depot & the library are regular activities now and we are slowly working on play-dates. In the meantime, tomorrow I sign her up for a summer camp reading class that she’s been scholarshiped into and that will be for a whole month. We’ve been told that Twinkie reads at a 5th grade level. Should be fun!

I hope to post responses soon to some of your great posts as I’ve been seeing lots of great things! And, since Mother’s Day is coming up I thought I’d leave you with this rather “rough” bit of poetry…

I love the training videos! May I suggest you get them out to some of the major spinal hospitals? I wish I had those when I first started with hubby.

I’ve learned about PAH and now actively ask questions about cardiac, oxygen and children in my EP work.

I am learning about Epilepsy and how to take extra precautions.

I’ve learned how to appreciate my shoes and make a personal goal for me that by end of the year to buy myself a new pair of heels for work. (Last time was about seven years ago.)

I am being taught how to be patient with elder mental health issues. (I have a relative who, even though they spent a week with us, still cannot understand why it is impossible for me to take five minutes to do something simple as address coupons the “very instant” they come in the mail.)

I am also constantly reminded that I can cry, be frustrated, seek calm and always be in awe of how to laugh at life because I can!! And not because somebody can dictate to me when it’s appropriate to. (Heb. 11:1)

And for someone else here to who taught me how to do something I’ve never done with a camera before.

Twinkie picked this for you!






The Roaring Mouse




Avatar of Roaring Mouse

About Roaring Mouse

I am a G-d speed caregiver for a spouse who had a spinal cord injury, syringomyelia, autonomic dysreflexia, TBI x 2 (Tramatic Brain Injury), complex regional pain syndrome and two shunts.  I've been with Caregiving.com for over two years now and have actively participated in the Caregifter Essay program. As an Emergency Management Disability Liaison for a nationwide disability disaster response non-profit, I work to engage both disaster responding and the disability communities to network and collaborate on disaster planning while educating and advocate both on the importance of the topic.  In my spare time I volunteer at a local spinal cord rehab therapy center gifting both the clients and the caregivers with resources and silly jokes so they leave with a smile.

4 thoughts on “Hang on for the Ride!!!

  1. Avatar of ejourneysejourneys

    RM, that lily is gorgeous! (Good job picking it, Twinkie!)

    And YAY on Hubby being pain-free! Fantastic news also on the Roho cushion and showers. I hope the home modification program comes through!

    You’ve had an amazing week with Twinkie (awesome news about the scholarship). I hope she can learn to vary her diet and find a way to ease into new foods.

    Re speaking engagements — could there be a way to do those via video or webinar? Or Skype? Some organizations have equipment that can project from a computer onto a screen, so that you could give a presentation and take live questions via videoconferencing. (Sometimes an organization can find a sponsor that does free video hosting for the conference.)

    I love your Garden reminder, and Twinkie’s art!

    Keep Breathing. Thank you for your amazing energies and spirit!

  2. Avatar of DeniseDenise

    Hi RM–You have good news to roar about! Thank goodness for Hubby’s rebound, which must add such a nice energy to the house (and not from the powerchair). :) When one isn’t well in the house, it’s hard for others to feel well.

    The activities with your daughter sound just terrific. It sounds like she has a good summer coming up. She also sounds like she knows how to read more than books. :) Perhaps she’s exerting some control in the house by controlling what she eats. She sounds very clever and quite delightful (but I’m not trying to get her to eat dinner). !!

    I love EJ’s idea about the video conferencing. Could you offer that as an alternative when you receive requests? Technology has made so many things possible–perhaps it holds your answer, too?

    Thanks for keeping us in the loop. Hope your weekend is a good one.

  3. Avatar of Roaring MouseRoaring Mouse Post author

    I love the ideas on the video. But I don’t have the equipment to pull it off. Many have suggested I do something like a regular podcast. Which I haven’t been able to re-entertain the idea until now that Hubby is home. The other catch though is that in EP…this idea doesn’t fly very well …if even at all. Most non-profits that I speak before are simply lucky to have a computer at all. But you’ve both given me some thinking to do…so keep challenging me on this. Maybe I can come up with something. I still dream of a brand new website as it is (the old is spinalcordresources.com).

    As to Twinkie…yes she is in the control phase of life! So I’ve had to sit down with Daddy and give him the “Geez do you think you can get cold about discipline now?” talk… On Twinkie’s side…imagine if you always saw your mother always giving your father attention and you always had to wait because he needed things. You’ld get a bit exasperated too! Again, ideas are welcome!

    Hugs to all!

  4. Avatar of KathyKathy


    I’m so happy to hear that your hubby is now pain free!!! I’ve been praying for you all :)
    And getting his cushion FINALLY!! YAY!!!

    Busy busy busy you are ! You have a picky eater, I did too. What about veg/fruit juice or carnation instant breakfast? A couple ideas off the top of my head. She’ll come around.

    Still continuing to pray but now I can put a smiley by the pain issue :)


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