My Battles Praising God Spinal Cord Injuries Trusting God

Another Awesome Day – Thank you God!

Wow, it seems my blog is slowly turning into more of a journal about my never ending health issues.  I know initially after my spinal cord injury and even today, I couldn’t seem to research enough, always looking for what others have experienced, so I pray, in some small way, I can help someone who also seeks information about spinal cord injury/disease.

First up, here are a few updates since the last post. After a discussion with my awesome spinal cord doc at the VA, we decided to put me on the very lowest dose of Fentanyl patch that is available.  I opted for the patch because it has less “drugged out” side effects.  In fact, I don’t feel like I’m on anything at all, except that it reduced my pain level from a constant ten down to a five or six.  WOW!!  WOW!! WOW!!

What a relief to be able to be up and functioning at a pain level that is distractible.  I absolutely hate narcotics but I was in a catch 22 situation.  I wanted to explore alternative methods of reducing pain such as Myofascial Release, Acupuncture, Acupressure, Massage, Mindfulness, etc..  I believe there is much value in these non-medicinal treatments but living at a pain level of ten, I could barely make it out of bed to go to a critical doctor’s appointment, let alone go to regular therapy or do the things I miss like, hanging out with my grandkids, bumming around with my husband, getting haircuts and like, taking a shower more than once a week.

So we decided to go with the Fentanyl to give me an opportunity to explore the different options to see if any of them will work for me.  I made it clear, I’m not going down the path of tolerance with these drugs.  I already burned through Tramadol – it no longer has any affect at all on my pain and I know the same would eventually happen with any other narcotic I try.  So I’ve been adamant from the start that if none of the alternatives work, I’ll lean even harder on God to get me through the pain – and who better to lean on the the ultimate Healer Himself!! ✝️    I truly dream of a day when I can just take Tylenol if the pain spikes a bit higher than I want. I have acupuncture scheduled along with physical therapy and massage will be coming down the line.

About 4 days after the first patch application is when the pain relief came.  I actually had the wonderful pleasure of going on a date with my husband.  We went to see Unplanned, which is a wonderfully done movie that I believe every person on earth over 17 should be required to see.  Maybe we’d have less murdered babies…but I won’t go down that path here…it deserves an entire post for that very sad, sad subject.  But to actually go to a movie theatre and hang out with the love of my life…I was on cloud nine!! Praise God for the gifts He gives me!  So now that I’m at a tolerable pain level…life is going to get very busy investigating all the alternatives out their. I will need the strength of the Lord to keep my schedule straight for sure 😂

I would call today a winner overall.  I’m scheduled to have another round of botox injections in my bladder in a week.  I have such severe bladder spasms and don’t care for  the pill medications due to the side effects…especially that absolutely horrific dry mouth!!!  My last experience with botox was not good initially because I was one of those rare ones (when am I not 😂) who got some systemic effects.  I was in bed for 10 days feeling like I had the worse case of flu ever.  I violated my own rule of “never saying never” and determined then that I would never have that done again.  But, sometimes being the “rare” one has its advantages and the effects of the botox lasted much longer for me than for most – it was well over a year before I had any bladder spasms again.

So once again, I’m in the boat of having such severe spasms that people seeing me breathe through them must think I’m in labor 😗.  BTW, breathing through spasms is a great technique.  99% of the time, it prevents my sphincter from deciding to open the flood gates.  It was a no brainer to request another treatment of botox. That’s why I don’t like to say the word never lol. In order to do the botox, however, they always get a urine culture to see if they need to give preventative antibiotics but since my suprapubic catheter had been in for 5 weeks, they wanted it  changed before getting the sample.  The last catheter change (my 4th one) was done at home by my very skilled RN and was a complete fiasco.  I had a silicone catheter in – I’m finding I much prefer latex – and it didn’t want to come out. In short, there was blood and other stuff I won’t mention plus after getting it out, the new one didn’t want to go back in.  We finally got it in by me using my w/c which does every position imaginable to finally find the track’s happy place so the catheter would slide in.   Okay…no more gory details 🤢 lol.  So, of course, nobody wanted me to have it changed at home but I needed it exchanged and a culture obtained quickly, in order to keep my OR date for the botox.  Big conundrum!  During all the POW WOW’s the docs and nurses at Mayo were having, I was actually in Minneapolis having my initial Myofascial Release consultation…more on that later.  The VA was actually very helpful, trying to accomplish the suprapubic change and culture while I was there but they were just way too overbooked so it wasn’t an option. I give them much credit.  The Minneapolis VA SCI/D area will attempt to move mountains for their patients.  They are so compassionate and dedicated to each and every one of us.

After a few other contacts with VA staff (one of them involves a new bed for me – YAY!), we headed south towards, well, we weren’t really sure since we didn’t hear back from Mayo yet.  We passed the turn off to get to our town, on the “guess” that I’d be able to get into Mayo today for the catheter exchange and culture but after driving around (“doo da doo da”), I finally called, only to be told they couldn’t do it until tomorrow. One blip in the road but that’s okay…the rest of the day was great.

So back to the good stuff. First, my Myofascial Release – we came up with a few potentially attainable goals, relating to activity and pain and then my therapist plans to do 4 weekly sessions for us to assess if the therapy is working.  This is totally new territory for me so I’m really excited.  My acupuncture is also already scheduled – again I’ve never had it before. My VA spinal cord doctor will be doing the acupuncture which makes me feel much more comfortable than going to a stranger. I’ve had dry-needling in my upper arm where they insert small needles and apply a very small current to release tension from knots and pressure points in muscles. I had some success with that so I’m optimistic about the acupuncture. Acupuncture is somewhat different in that it’s purpose is to release endorphins and affect the nervous system by inserting the needles at specific locations in the body.  I’ll make sure to report back the results of these new and exciting things I’m trying!

Another win for the day was I’m getting a new bed from the VA. The current alternating air pressure bed I have is not working for me because I must sleep in a “V” position.  Head must be elevated due to the GI problems I have and legs must go up also to keep me from sliding down.  I’ve noticed that all the air around my bottom just gets displaced to the head and foot, leaving me sitting on a very hard surface all night…not cool 😩 when you can’t move around a lot.  The new bed I’m getting is the Dolphin FIS (Fluid Immersion Simulation).  It is controlled by a computer and the slightest movement (ie…sliding my leg to the left, turning my head, etc) will trigger the mattress to compensate in pressure.  I’m optimistic that this too, will contribute to some pain relief.

A request is going in at the VA for another driver’s eval.  I had to stop driving when my right arm got too weak to operate the “highest” low tech controls available.  My van is zero effort steering, zero effort braking but to brake, I do have to push with my right arm.  I was finding it harder and harder to brake effectively over a year ago, so I took myself out of the driver’s seat for safety reasons.  For anyone in Minnesota…your welcome 😁. I will now have an evaluation where I can try out a horizontal small wheel to steer and a small lever for braking and accelerating.  This is the high tech stuff and we need to make sure I can do it before having the VA invest in a van with that equipment.  The only option after that is a joystick.  I’m from the Pong and Donkey Kong generation – I can’t even imagine in my wildest dreams, driving a van with a joystick (I wasn’t even that good at Pong and Donkey Kong 😂).  I’m praying the wheel and lever work because otherwise, I’ll take myself out of the driving world.

Another win today…my dietician gave me permission to use my feeding tube (at the same feed rate) only at night so essentially, I’ll be getting less formula and more real food.  Yippee!! I must confess, I’ve been remiss about using the tube during the day since I started eating but it’s nice to have the official “go ahead.” While I’d love to eat a feast immediately, I have to take it slow since my stomach has been without food for awhile.  I even ate a little popcorn at the movie and it was totally awesome!! I tolerated it great. My husband told me if I ended up in the hospital that night, he was never taking me to a movie again ROFL 😂.

So what’s my take on all this?  Well…I’m exhausted.  All that running around even as I’m improving is exhausting. More importantly, it is so clear how God has been at work in my life every second of every day – as He always is.  I can literally see the miracles He is performing right before my eyes.  When I feel stressed, I pray for peace and instantly a feeling of indescribable calmness comes over me.  I can literally feel myself being infused by the Spirit.  It is the most wonderful, marvelous and incredible feeling ever!  Wow…I can’t even imagine Heaven if I can feel so much peace and joy from God while living on this fallen earth.  I am broken but in Him, even on earth, I am whole.

My verse today:

Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.  John 14:27

My song today:

Lyrics (below video)

“Jesus, Your Love”

There is a love that calls me by the name
Sure as the sun, the moon, the stars remain
Your love for me will never change
Jesus, Your lo – o – ove
Jesus, Your love

There is a love that takes me by the hand
Guiding my heart to find its home again
And where You are is home to me
Jesus, Your lo – o – ove
Jesus, Your love

So let my heart tell You again
When seasons change and stories end
Your steady love
It will sustain me through it all
Jesus, Your love

There is a peace that stays though storms may come
I hear Your voice within the winds that blow
I hear Your song, it calls to me
Jesus, Your lo – o – ove
Jesus, Your love

So let my heart tell You again
When seasons change and stories end
Your steady love
It will sustain me through it all
Jesus, Your love

There is a strength that rises up in me
To know that You’ve been here be – fore me
A strength beyond what I can see
Jesus, Your lo – o – ove
Jesus, Your love

So let my heart tell You again
When seasons change and stories end
Your steady love
It will sustain me through it all
Jesus, Your love

So let my heart tell You again
When seasons change and stories end
Your steady love
It will sustain me through it all
Jesus, Your love

There is a strength that rises up in me
To know that You’ve been here be – fore me
A strength beyond what I can see
Jesus, Your lo – o – ove
Jesus, Your love

So let my heart tell You again
When seasons change and stories end
Your steady love
It will sustain me through it all
Jesus, Your love

Credits:

Song written by: Evangeline Sperti and Holli Johnson

Performed by: Kristene DiMarco

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