#CTST – MISSED YOU ALL!

Hey everyone! It’s time for another posting of Celebrate the Small Things brought to us by LEXA CAIN.  Post anything in life that you’re celebrating, no matter how small or big, on your blog.

Sign up by clicking on the image, hop around and celebrate with others.

Make Celebrate the Small Thingssure your blog post has a link to the sign-up as well, so other bloggers will be able to sign-up and hop around too. 

This is such a simple and easy blog-hop, and it also happens to be one of my favorites.  After posting the things you have to celebrate, please don’t forget to visit and thank Lexa and her awesome and amazing co-hosts for the wonderful job they do:

 

LG Keltner @ Writing Off the Edge   and Tonja Drecker @ Kidbits

 As I mentioned in an earlier post, I’ve been off the grid for several months. I think this may have been the longest yet. Since this hop is about the positives, let me bring you guys up to date as to what’s been happening.

  • I was approved for the Orange County Paratransit Service so I can get out more and go to doctor appointments without having to rely on Vivi or cabs.
  • I’ve been getting out more in the evenings and making some new friends. The physical toll it takes is so worth it though.
  • My daughter gave me my early Christmas present on Saturday… VIP tickets to see Melissa Etheridge in concert! We were there early for sound check and a photo-op with her. Totally awesome!

 

 

 

 

 

 

 

Best of all, I’m STILL ON THE RIGHT SIDE OF THE GRASS!! Yeah, Baby!!

What have you celebrated this week?

 

 

 

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INTERVIEW WITH A CRPS SUFFERER

Hello, bloggers. Since tomorrow is the last day of CRPS Awareness Month, I decided to interview a friend and former colleague who suffers from this horrible disease.

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CRPS Ribbon

Hi, Jay and thanks for taking the time to visit my blog today. We’ve known each other a long time, having worked together in EMS, you as the paramedic to my EMT. I know for the past several years you’ve been suffering from Complex Regional Pain Syndrome (CRPS) and since it’s CRPS Awareness Month, I thought it would be good to help educate others about this horrible disease.

What exactly is CRPS?

CRPS, also known as RSD (Reflex Sympathetic Dystrophy) is a progressive neurological disease of the autonomic nervous system and more specifically, the sympathetic nervous system.  The pain is characterized as constant, extremely intense, and out of proportion of the original injury.  It is typically accompanied by swelling, skin changes, extreme sensitivity, and is often very debilitating.  It usually affects one or more of the four limbs but can occur in any part of the body and in over 70% of those diagnosed, it spreads to additional areas.  It does not discriminate as it can occur in men, women, and children, although statistics show it occurs more often in women between the ages of 40-60.   It is ranked as the more painful form of chronic pain today by the McGill Pain Index.  It’s more painful than 3rd-degree burns, natural childbirth, amputation of a digit, you name it. Imagine having any of those…..24 hours a day, 7 days a week.  It’s brutal.

Though research has yet to prove WHY it occurs, or what happens in the body to cause it to occur, it generally happens after a knee surgery, or any traumatic event to a limb, back, neck, etc.  It could happen just by stubbing your toe or spraining an ankle.  The reason truly is a mystery.  The manifestation is a nightmare.

Because there are no absolutes with this disease, most people see an average of 5 doctors before diagnosis.  And while early detection and aggressive treatment are key, sometimes it can take years before you’re diagnosed.  If you’re lucky enough to have it caught early, you stand the best chance of remission between 3-5 months of symptom onset.  After that, your best bet is aggressive treatment to hopefully slow the progression.  There have been cases of spontaneous remission, but those cases are few and far between and we’ve learned not to rely on those statistics.

When were you first diagnosed?

I was diagnosed in April of 2014.  I had been injured on the job in May of 2013 and that injury resulted in knee surgery in June 2013.

What was the cause in your case?

The cause in my case was the knee surgery.  About 10 days post op, I complained of severe knee pain, swelling, and color changes in my left leg.  Anyone who knows me knows I have a very high pain tolerance, so for me to complain is significant.  When the surgeon re-evaluated me, he chalked the pain up to my age (I was 41 and his direct quote was, “Jay, we’re not getting any younger.  The older you get, the longer it takes to heal”).  He told me that I could start PT and to go as hard as I wanted to.  Wanting to get back to work as soon as I possibly could, I did just that.  My leg began to turn purple, the pain was outrageous…to the point where it made me vomit, and I didn’t seem to be getting better.  No matter how hard I worked.  I continued to complain but because I was on worker’s comp, the surgeon’s hands were tied as to what he could do and the comp company, not knowing my work ethic and how much my job meant to me, felt like I was just trying to get out of working or was looking for a bigger settlement check.  Obviously, this isn’t something they said to me or anyone else for that matter.  But I believe actions speak louder than words and when you lose your job, your career, are rendered 100% disabled, and STILL, they refuse to pay for treatment, go against judge’s orders, and don’t act until the judge levies sanctions against them, well, what other conclusions can you draw?

Describe what you go through on ‘bad days’.

My bad days….ugh.  LOL. Unfortunately, my bad days far outweigh the good.  There is nothing “positive” about this disease.  The suicide rate is twice the national average because the pain levels are so high, it’s difficult to treat.  Narcotics won’t help as they don’t help with nerve pain.  They just make you not care about it.  That hardly seems productive to me.  So, my bad days.  Well, it’s not pretty.  My arms and legs can turn black.  The pain is so bad I can vomit literally all day.  I’ve been known to lose control of my bowels at the most inopportune times.  Sometimes I can’t eat at all.  Sometimes I can’t feed myself.  Sometimes, I lose my vision and can be completely blind for minutes…to hours.  Because of that, I can no longer drive.  When I can see, often, it’s just shadows and if I go out to a restaurant, my other half generally must read the menu to me depending on the lighting. Sometimes I can’t sleep for days…like, 4-5 days.  That can make me hallucinate.  Exhaustion can do that to you.  I can’t regulate my body temperature and will sometimes sweat profusely for no reason.  I can also pass out spontaneously.  There is no warning.  That’s always fun too.

I understand there are several stages of this disease. Please explain to my followers what stage you are living with and what it does to your body systems.

Some doctors keep it simple and just have a CRPS Type 1 and Type 2.  Others stage it.  The difference between Type 1 and 2 is that Type 1 occurs after a surgery, etc.  Type 2 occurs after a nerve injury that can be pinpointed.  As for stages, they go up to 4 gradually…and that’s too much to go into but it generally ends up working out in the same way as the 2 types.

As for me, I’m considered CRPS Type 1 with systemic manifestations.  Which means it’s spread throughout my body and I have organ involvement.  If we’re talking stages, I am at Stage 4.  There is no 5.  Both definitions basically mean I am not going to get better.  This disease, because it wasn’t caught and then treated in a timely fashion, will one day completely take over my body and cause it to shut down.  We don’t have a time frame for that.  We just know it will happen at some point.  In the meantime, any treatment I have now is working to (hopefully) slow that progression down.

As for body systems, I can’t speak for others as this disease is not “textbook” but I can say that with me, it’s had cardiac effects.  I can go into an SVT (supraventricular tachycardia) for no rhyme or reason.  For that, I take beta blockers as needed to prevent my heart from going into a fatal heart rhythm.  I also am now suffering from kidney disease.  That’s directly related to the CRPS.  Because it’s manifested in my stomach lining and intestines, I usually say that I “rent” my food because, on a bad day, I throw it up or worse.  I have a hard time metabolizing my food.  As I’ve said before, I can pass out for no given reason.  We believe that to be related more to neuro than cardiac but honestly, we just don’t know.  But because of the cardiac effects, I stand a 20-30% chance of not waking up each time I fall asleep.  I’d like to believe I stand a 70-80% chance of waking up instead, as those odds sound better to me!!

What treatment options are there and have any of them worked for you?

Treatment options are few and most considered “experimental.”  Because of that, insurance covers very little in terms of treatment.  For the nerve pain, Neurontin and Lyrica are popular drugs.  Sadly they did very little for me.  Low dose naltrexone has worked for some.  I think the most popular are ketamine infusions.  Whether it be inpatient or out, that’s a treatment that seems to get the most response.  Unfortunately, that’s one of the treatments that’s considered “experimental” and it’s extraordinarily expensive.  Some mortgage their houses for one round.  It’s tough stuff.  Ketamine was known most widely as a horse tranquilizer and it was also called “Special K” in the clubs for its penchant to act as a hallucinogenic.  It is thought that if given at high enough doses, it can “reset” your sympathetic nervous system for a while and help with pain management.  I’ve had both inpatient and outpatient treatment with this drug.  It’s quite dangerous, but the rewards outweigh the risks, I think, when looking at a future living with this disease.  I’ve had the most response from the ketamine than with anything else, but that still is on the minimal side.  We’ll never be pain-free.  EVER.  But if ketamine can reduce my pain from 10 to a 6 for a few months, I’ll do it.  Regardless of risk, I’ll do just about anything to NOT hurt that way that I do.

Where do you go from here?

I’m not sure.  I have a saying that if I can just get to midnight, I’ve got a new chance at a better day.  So, no matter how horrible my days are, I focus on getting to midnight. Midnight/tomorrow offers hope.  That’s my focus.  As for the disease, I don’t know.  We’re still fighting worker’s comp.  The cold weather is terrible for us as it causes pain flares that, honestly, feel like they’re incompatible with life.  Hopefully, in the near future, we’ll sell the house and move to St. Petersburg, Florida.  The weather down there is ideal for people like me.  There’s a specialist that hopefully will be able to help me improve my quality of life.  My fingers are crossed we can make that happen.  In the meantime, I get to midnight.  Every day.  And then I count my blessings that I did.  I give thanks for those who have stuck by me.  And I appreciate all the things I never did before.  For now, that’s where I’m going.  

Thanks again so much for visiting me today, Jay. Much love always, my friend. 

Jamynne Bowles spent the better part of 20 years working in the back of an ambulance first as an EMT, then as a paramedic. It was her absolute dream job until suffering an on the job injury that required minor surgery.

From that surgery, she ended up with Complex Regional Pain Syndrome, a progressive neurological disease for which there is no cure. Totally disabled, she works hard spreading awareness and educating others about a disease very few know anything about.

You can follow her at http://www.facebook.com/jamynne as well as read more about her experiences fighting this disease at http://www.themighty.com. Just insert her name into the search box to find her.

 

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SO MUCH TO SAY

Hey there, my wonderful blogger friends. It’s been a long while since I posted but it wasn’t really my fault this time (kinda). I left my laptop sitting in a bit of water accidentally and she just stopped working. Yes, a black screen is BAD.

So, I played it safe and bought myself a Chromebook (the water-resistant, rubber bound kind). It was a learning curve for me but I think I’ve got it now.

What’s going on you ask? I’ll start with the good and work my way down. I was approved for the Orange County Paratransit bus so I can get out of the house more often during the day. I’ve been going out more with friends, supporting them in their different endeavors. I use up a lot of  ‘spoons’ on these days/nights and am usually out for the count for a few days after, but I’ll take it.

Oh, and today marks six years since I had the subarachnoid hemorrhage. The day after tomorrow will be the sixth anniversary of the brain surgery itself and subsequent stroke.

The depression had hit me really, really hard for a while but I weaned myself off 30 of the 90 mg of Duloxetine because my primary said there wasn’t much by way of drug therapy when I’m on that med. I’ve taken it for almost five years for neuropathic pain and to be honest, I don’t notice much difference taking just the 60mg.

My right knee has been acting up badly over the past few months from the ACL injury and the Ortho had to give me a cortisone shot. It was excruciating for about three days, then felt better for a good seven weeks. Unfortunately, these shots can only be given quarterly so he put in a request to insurance for another type of injection treatment. When the pain is really bad, I’ll take a very low dose narcotic (not a fan).

That’s basically been the past few months in a nutshell. Oh, and I got culled from the #IWSG. <Sniffle> It’s all good though; I’ll be BACK!!

 

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#CTST – ALWAYS SOMETHING TO CELEBRATE

Hey everyone! It’s time for another posting of Celebrate the Small Things brought to us by LEXA CAINPost anything in life that you’re celebrating, no matter how small or big, on your blog.

Sign up by clicking on the image, hop around and celebrate with others.

Make Celebrate the Small Thingssure your blog post has a link to the sign-up as well, so other bloggers will be able to sign-up and hop around too. 

This is such a simple and easy blog-hop, and it also happens to be one of my favorites.  After posting the things you have to celebrate, please don’t forget to visit and thank Lexa and her awesome and amazing co-hosts for the wonderful job they do:

 

LG Keltner @ Writing Off the Edge   and Tonja Drecker @ Kidbits

 I’ve got quite a few things to celebrate…mostly over the past few weeks, since I haven’t been around much.

  1. If you read my IWSG post this month, you’ll have read that I finally reunited with my aunt and cousins after 16 years. Took a road trip to Massachusetts last month for a week and had a blast!
  2. The Cervical MRI came back and the doctor said that the cyst is the same size, so we’re going to leave it be. Whew! Had me worried there for a second.
  3. My daughter Mandy, Vivi, her family, and a couple of friends took me out for my birthday a couple of weeks ago. Amazing time.

 

Vivian decided to play make-up the night before my birthday to get an idea of the next day’s creation. 🙂 Now I’m using it on a ton of profile pictures! 😀

 

My Cousin Michelle & her son Alex

 

Andrew (Shell’s other son) and Alex

 

 

 

 

 

Me, Aunt Mickey, Alex, and cousin Michelle

 

 

 

 

 

 

Best of all, I’m STILL ON THE RIGHT SIDE OF THE GRASS!! Yeah, Baby!!

What have you celebrated this week?

 

 

 

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IWSG – A LITTLE OF THIS AND A LITTLE OF THAT…

Hello bloggers. It is the first Wednesday of the month and we know what that means, right? Time for the Insecure Writers Support Group – #IWSG.

NinjaInsecure Writers Support Group Badge Captain Alex J. Cavanaugh , my hero and one of my mentors, founded this amazing and wonderful group.

The group’s purpose is to allow writers to share their doubts and fears, trials and tribulations without fear of being mocked or feeling foolish. It’s also a place where writers who have “been there” can offer wisdom and guidance.

Whenever anyone finishes a draft, edits their work, finds the perfect critique group, publishes their work, or has any other good news to share, this is the place to do it too!

The awesome co-hosts for the August 2 posting of the IWSG are Christine Rains, Dolarah @ Book Lover, Ellen @ The Cynical Sailor, Yvonne Ventresca, and LG Keltner!

Oh boy. Where do I begin? I can’t believe it’s been two months since I posted ANYTHING on this blog. I know I’ve been bad, but now I’m starting to break records. And not in a good way!

I’ll start off with some of the good things going on. It’s always better that way, don’tcha think?

I’ve been reunited with my aunt Mickey and cousin Michelle after sixteen years. It was truly a blessing. I hadn’t seen them since my mother’s funeral in 2001. They picked me up last weekend to spend the week with them in Massachusetts. The ride was brutal but worth it. Sadly, my favorite uncle Joe passed away in 2015, so I missed the opportunity to see him and tell him again how much I love him. Shell’s kids are amazing young men now. One is in a graduate program for neuroscience (look at that!), and the other is in college as well.

The weather wasn’t cooperative, so I had a few bad days while I was there. The fact that my cousin made two Hungarian dishes for me while I was there certainly lifted my spirits. 🙂 I’ll be posting some pictures soon.

I was sad to leave but had to get back to Sophie.

Today I went for my followup cervical MRI, with and without contrast, to see if the Syringomyelia has gotten worse or stayed the same. Fingers crossed! I don’t want any more on my plate. My knee has been giving me a ton of problems over the past few months and I’m almost afraid to have it looked at again.

August 2 Question: What are your pet peeves when reading/writing/editing? You can check out the answer at my other blog site lilicasplace.

What’s new and exciting in your neck of the writing woods?

 

 

 

 

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#CTST – IT’S BEEN A WHIRLWIND

Hey everyone! It’s time for another posting of Celebrate the Small Things brought to us by LEXA CAIN.  Post anything in life that you’re celebrating, no matter how small or big, on your blog. Again, it’s been a while since I posted, but I have a lot of news to share.

Sign up by clicking on the image, hop around and celebrate with others.

Make Celebrate the Small Thingssure your blog post has a link to the sign-up as well, so other bloggers will be able to sign-up and hop around too. 

This is such a simple and easy blog-hop, and it also happens to be one of my favorites.  After posting the things you have to celebrate, please don’t forget to visit and thank Lexa and her awesome and amazing co-hosts for the wonderful job they do:

 

LG Keltner @ Writing Off the Edge   and Tonja Drecker @ Kidbits

 

 I’m going back in time from furthest to most recent, so bear with me. 

My daughter Mandy surprised me with a visit for Mothers Day and Vivi’s family and us had an awesome brunch at my favorite Indian spot – Saffron.

I got to see both Guardians of the Galaxy 2 and Wonder Woman few weeks apart with Vivi and the crew. Loved them both.

On June 11 I participated in a 5k fun run/walk at the YMCA and actually finished! All that working out at the Y paid off. 🙂 I came in last but don’t care. I didn’t even use my cane until the last mile. You can check out the last four minutes or so on my Facebook Page. My official finish time was 1:22:02,

My pain levels have gone down a little over the past couple of weeks, except for the two days after the walk (Yeah, I was in bed for a good day or so).

Finally, Vivi and Al bought a portable hot tub and I got to enjoy it for the first time the other day. I could get used to this…

Best of all, I’m STILL ON THE RIGHT SIDE OF THE GRASS!! Yeah, Baby!!

What have you celebrated this week? I hope you all have amazing little things to share! Xoxoxo

 

 

 

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WHENEVER QUOTE – JUNE 21, 2017

Good morning, everyone! I hope you’re all enjoying the first day of summer. It’s a beautiful day here in Middletown, NY and felt it appropriate to post a Whenever Quote. The past couple of weeks have been kind to me, with minimal pain levels (except for one exception), and some great happenings.

For those followers who are also friends on Facebook, you probably know that I completed a 5k fun run (walk, in my case). I came in dead last but I finished! I worked out at the Middletown YMCA for almost two months in preparation for the event. Prior to working at the Y, my endurance wasn’t great at all, so I made sure to build up my Stroke Survivor Superpowers. I didn’t need my cane until the last mile. 🙂

I felt this quote by William Barclay said it all.

I’ll be posting a video that my Ride or Die girl Vivian taped during the last four minutes or so of the event on my Facebook Page, which is public, so if you’d like to check it out later and like it, that’d be awesome.

Hugs to all of you.

 

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