Dipping my toes in again…

I haven’t blogged in a while.  It’s been part writer’s block and part being overwhelmed by life lately.  I’ve had a lousy summer, in which so much stuff has gone wrong, that it is almost ridiculous at this point.  These are the events that I have been dealing with for the past 2 months.

-I had pneumonia (which I had written about previously).  I didn’t recognize the signs of being sick and it ended up getting into my bloodstream causing me to have the worst episode of vomiting/diarrhea that I have ever experienced in my life.  If I am being honest, I thought I might die because I was just that sick.  Worst part was that I was visiting my elderly parents two hours from my home.  It’s never fun being sick, but its even less fun when you are not in your own home.

-My cousin overdosed and died (see a Senseless Goodbye).  Honestly, I can’t write any more about it without getting upset.

-On my last day staying with my parents, I heard a thump.  My 83 year old dad fell and ended up needing to have an extended stay in a rehabilitative hospital to receive OT, PT, and speech therapy for 2 weeks.  I had to stay an extra day and missed my first day of summer work, thus missing an entire days worth of pay.  I would do it again in a heart beat, but I’m picking up more clients now to make up for the loss.

-My mother has also been sick, so I’ve been back and forth taking her to her appointments.  Luckily, most results have come back good.  Still waiting on others.

-My gas was turned off while I was away because a neighbor gave false information to the construction crew connecting our homes to the new gas main.  So when I finally returned to my home, I had to live without gas, hot water, stove for 4 days until I was able to take off from work to have them come in and fix the situation.  The situation has impacted a friendship and I’m still very hurt by the whole situation.

-My Internet and phone was turned off.  I had cut cable and returned my set-top boxes late due to being sick with pneumonia. I was keeping my Internet and phone service. The person at the Verizon store mistakenly closed my account and I had to fight for days to get service back in working order.  It seems like a stupid thing to get upset about, but by this point, my nerves were shot.  I called Verizon because the store clerk advised me that I had been overcharged for a service.  When I called, the person on the phone said, “Uh, you canceled your service this afternoon.”  (Imagine my head exploding here).  She helped me get the Internet back but the phone took days. The worst part is that I was automatically charged  $375 because of an “early termination fee”.  They are in the process of helping me clear that up because I never requested to terminate my service.

-I had to constantly cancel my own physical therapy due to illness and needing to go out of town for family issues.  My legs just hurt and my back aches.  Hoping to get two good weeks in before starting back to work.

-The side wall of my front tire blew out while I was driving.  I wasn’t hurt, thankfully and I was pulling in to a parking lot as it happened.  The irony is that my lease is ending in 3 weeks, so a new tire was not something I was happy about having to purchase so close to trading it in.   A nice man helped me get the spare tire on.  He had a bad back so the two of us had to work together.  I hurt like hell the next day.  I really hope he fared better than I did.

-Georgia continues to max out of her pet insurance and her monthly care is skyrocketing to a price that truly scares me.  She takes 16 pills a day and two shots of insulin.  Her eyes no longer make any tears so it’s been a nightmare keeping them lubricated.  It’s horrible how goopy they get.  She has also lost all of her sight.  I think it’s been harder on me than it has been on her.  Watching her struggle, at times, just kills me.  She is still a happy girl but my heart just aches.  I can’t afford the surgery to remove the cataract to restore her vision and although I shouldn’t, I feel terribly guilty about it.  You can see by the following video, she is coping just fine.  I need to learn from her on how to deal with life….or get someone to take care of me at the level I take care of her!  LOL

She stresses me out financially, but Georgia is such a blessing.  She made me a mom, and author, and an advocate for Cavalier King Charles Spaniels.  Georgia Grace is a pretty mighty force.

-Finally, I went home this past weekend to take my mom in for another test.  I was staying the weekend and BAM….I got hit with either food poisoning or the stomach flu.  My gut thinks it was the flu but it’s so hard to know for sure. It wasn’t as bad as what I dealt with in June, but honestly, vomiting and stomach cramps for 12 hours just stinks so much worse when you are in someone else’s house…..and they only have one bathroom.

So I had to deal with some BIG bumps in the road and doing that made it so much harder to deal with those little ones like the Internet being turned off.  I feel like a black cloud is just following me everywhere.  It’s easy to get down.  I’ve been sad for so long and I’m tired of it.  I’m exhausted all the time.  Sleep is the only time I’m not worrying about something.  My plan for the next two weeks is to work on projects in the house, read some trashy romance novels, and to get back into meditation.

In the midst of all of chaos of my summer, I got a message reminding me to apply for the American College of Rheumatology’s annual Advocates for Arthritis Event.  Now I’ve made it clear to many people that I won’t go on vacation away from Georgia. She has 9 chronic illnesses including diabetes, a neurological disease, heart disease, and blindness.  It’s a lot to ask someone to take care of her.  Putting her in a hospital setting is an option, but it a high stress setting and I just can’t do it to her.  Plus, I can’t afford it. So I asked my college friend, who has watched her for years and she agreed.  I will take Georgia over a few times before so she can relearn the house and I can teach family members how to give an insulin injection.  I’m not going to lie.  I feel nauseous just writing this, so actually leaving her is really going to challenge me.  The good thing is that DC is only 2.5 hours from where she will be staying.  I could get to her quickly if needed.  I have 1 month to psych myself up for this.  Wish me luck.

Why do I want to go back to Capitol Hill to advocate for patients?  Because my cousin became addicted to pain meds/ opioids.  He would ask me to give him Georgia’s pain meds because he “couldn’t get in to the doctor until later in the month”.  I caught him more than once checking out her medication when I would visit my parents.  If he knew I was in town, he would visit in hopes of getting her drugs.  He was an addict.  I’ve taken pain meds for over 18 years responsibly.  I am not an addict.  I’m a person living with chronic, painful illnesses.  The pain medication I take is very mild, but I know many other people living with pain who need stronger opioids to function and because of the “opioid crisis” their means of managing pain has been taken away.  Many patients are being made to feel like criminals for even asking for pain meds.  Many patients are hitting rock bottom because they can’t deal with the pain.  I even know some who have been referred to methadone clinics as a way to easy their pain.  It’s insane.  The patient voice needs to be heard.

I don’t know what the topics the ACR will want us to discuss with political aides and politicians, but I’m ready for the challenge.  After such a rotten summer, I’m looking forward to three days of doing something for me.  Something that will help others living with various types of arthritis.  Something that means a lot to me.  It will be my 4th time on Capitol Hill.  After I retire, I plan to make advocacy work my full-time gig.  Until that time, I’ll take these opportunities as they arise to try to make a difference.

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Writing truly helps me deal with my physical and emotional pain, so thank you for reading my long and winding rant.  It means a lot to me.

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Kelly holds masters degrees in both Special Education and Speech-Language Pathology. She works full-time as a speech-language pathologist in both a public school setting and as an adjunct faculty member at a university, in Philadelphia, PA. She specializes in both autism and augmentative/alternative communication and took her skills to Uganda, Africa to start a special needs program for disabled children living in an orphanage in 2011. Kelly began experiencing symptoms of autoimmune arthritis in 1984 (while in her teens) but wasn’t officially diagnosed with autoimmune arthritis until 2001. Her first diagnosis was Sjogren’s syndrome. Eventually her diagnosis was changed to sero-negative RA and now Polyarticular Spondlyoarthropathy. She also manages thyroid disease (resulting from Graves Disease), fibromyalgia, renin-deficient hypertension, and disseminated superficial actinic porokeratosis (DSAP) on a daily basis. Kelly connected with other autoimmune arthritis patients via social media in 2008. She began volunteering with the “Buckle Me UP! Movement”, which evolved into the International Autoimmune Arthritis Movement (IAAM) beginning in 2009. Then became a cofounder of IFAA in 2013. She has represented the ACR on Capitol Hill as an Advocate for Arthritis, was a finalist in Wego Health’s Health Activist Hero awards in 2014, and speaks at various healthcare conferences as a patient advocate in the Philadelphia area.

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