Fa la la la la lazy…..

Christmas is in 4 days. Are my gifts wrapped? No. Am I packed? No. My decorations are minimal….and so is my Christmas spirit. My 2019 was extra crappy. Here is a little recap….

January: I started the year with a broken foot/non-weight bearing. On January 2, my cat tripped me and I ended up tearing the sheath from my three toes in my boot.) Those toes kept me in physical therapy longer than the broken foot!!) I also ended up with bronchitis that was so severe, I ended up out of work for 10 days. A broken foot, RA, and bronchitis. I was a hot holy mess but I mastered my high school on my scooter and took the ramps like a bat out of hell. Is it wrong that I miss that thing??

February: My parents were celebrating their 50th wedding anniversary and my dad choked while eating dinner. This was the 2nd occurrence of choking. I feared he had dysphagia. I would find out later that I was correct.

Happy 50th Anniversary Mom and Dad!

March: Georgia’s UTI’s continued to worsen. She ended up being diagnosed with emphysematous cystitis. A complication from her diabetes. Months of suffering. Thousands of dollars. My girl was finally getting back on track.

My resilient little girl. Smiles through it all.

April: Georgia ate a bottle of chewable anti-inflammatory medication. She has never gone near her meds in the past, but these were free samples and I guess she liked them when she tried them. She spent 3 days on IVs to prevent her kidneys from shutting down. I was able to have her home for her 10th birthday. A milestone that I did not think she would ever achieve. She is my miracle and I adore her.

May was uneventful. Thankfully! I knew I was going to be switching biologic drugs, so I was feeling extra achy as the month went on. I expected this. It wasn’t fun, but I was okay.

June: I finished my 18th school year and was ready for a vacation. Went to visit my family but wasn’t feeling well. Turned out that I had Community Acquired Pneumonia. I spent three weeks in bed at my parents house. I don’t recall ever being so sick. Pneumonia prevented me from starting my new biologic for almost 2 months. I was in excruciating pain. During the 2nd week of being sick, my cousin Patrick overdosed on heroin/fentanyl and died. I was devastated. I stayed an extra week. On my last day in town, I was packing and heard a thump. I opened the bedroom door to see my dad lying on the floor and blood everywhere. My dad was diagnosed with Parkinson’s Syndrome ( I figured this was the case, but this made it official). During his stay, he was also diagnosed with dysphagia (FINALLY). He got OT, PT, and speech therapy for the rest of the summer.

I will miss you forever and a day. Until we meet again.

July: I began working my summer job. I had missed almost 3 months of my part-time jobs because of my broken foot, bronchitis, and pneumonia. I needed to work. I was breaking out with inflammatory rosacea and began taking meds to control it.

August: I finished up with work, went back to visit my parents and spent a week at their home with constant vomiting and diarrhea. (Honestly, I’m surprised they let me visit anymore after pneumonia and this!!) My entire month of August was spent trying to figure out why I was so chronically sick with colitis. Lots of tests showed nothing. I knew it had to be something I was taking. Trying to rule out my new biologic drug, my diet, etc. Turns out it was my rosacea medication. My skin looked great but my stomach was torn up. No more doxycycline for me. The good news is my mom got good news with her health. Dad was good. Mom was good. Georgia was good. I was good. Things were looking up!

September: I started my 29th professional school year. I went to DC to represent the ACR on Capitol Hill. My new biologic drug was doing GREAT! I was seeing a light at the end of my miserable year. I got help at work and things were really going well. I celebrated my 50th birthday and was feeling good.

October: The grind of working my multiple jobs was wearing on me, but my new drug was holding me up well! I was feeling pretty good and fairly pain free. I walked in my first 3K in a long time with Georgia to raise money for animal rescue. I was really proud of myself. Georgia got a good report from her cardiologist and I was told she could now come in for yearly check ups instead of 6 month echocardiograms! Unfortunately, while we were there, she had a cyst burst on her paw. We left the cardiologist and went right to the ER. Turns out she needed an increase of her most expensive medication. Now instead of $90 a month, it was going to cost $176 a month. Yippee!!

Not easy, but I did the entire charity walk, pushing my Girl in her chariot!

November: I began to feel a touch of an upper respiratory infection. I tried to get ahead of it by going to the doctor. Unfortunately, that didn’t work. Four weeks of a URI that turned into a sinus infection and then bronchitis. I was out of work for 5 days and had no voice due to severe laryngitis. Have I mentioned that I am a speech-language pathologist?? Speaking is kind of my job…. I pushed myself to work my daytime job, but canceled all of my evening work. I ended up missing another month of extra income that I use for Georgia. I also ended up being off of my biologic drug for almost 6 weeks. I was hurting.

Milo James (background) and Jaxson Teller (foreground). Georgia Grace can’t be the only one with a middle name.

December: Georgia has maxed out of her insurance. I maxed out my flex spending. I picked up two more jobs to work from home to compensate. Now, I’m not writing all of this to be a complainer. I’m not writing it for people to feel bad for me. I’m writing it because I want to purge this rotten-no-good-terrible 2019 from my life. Now I am setting goals. I love my job, but realize that working with children is not good for my health. I have 6 more years until I can retire at age 56 with 25 years in the public school system. I’m going to plan to make that happen. Not sure if it is feasible, but I need respect my autoimmune system. I really hope I make it until then. My body is screaming out that I can’t keep up this schedule.

This will be a tough Christmas without Patrick. We always had an annual toast to celebrate Christmas. We didn’t have a lot in common, but we did love each other. He was the first to help my parents at anytime, day or night. Send love to our family on our first year without him. I will always remember the good in him.

My Christmas vacation begins on Monday. I will have 9 days to rest and recharge my batteries. I’m going to make a point to enjoy time with family and friends, but I plan to be lazy. My body needs it and I need to start listening. Happy holidays dear readers! I wish you all the love, luck, health, and happiness you can manage!

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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.

4 thoughts on “Fa la la la la lazy…..

  1. I really enjoy your wonderful pictures. Your mom and dad in particular looked smashing. Something about those wonderful pictures are so cool. Well not all of them. My wedding day photos are a little sketchy. As in Elvis shoudl have left the building long before that day.

    Merry Christmas Kelly !!!

    Liked by 1 person

  2. So sorry to read about your awful year, I hope 2020 brings you more happiness and less health challenges. I’m on biologics and constantly suffer with chest and sinus infections. Trying to think of better way to say this given the subject matter and troubles you have faced but I enjoyed reading the post, as a late comer to your blog it was a really informative recap. I just wish there was more positives for you in there. Keep smiling and doing what you’re doing.

    Liked by 1 person

    1. Thanks Joel. It was a rough one but I am officially purging it. Focusing on positive. Biológica and illness are wearing me down. My disease is good but I am constantly sick. I contemplate what it would be like without drugs. Severe pain or chronically sick. Such a dilemma.

      Liked by 1 person

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