As My Joints Turn

My Autoimmune Soap Opera

In addition to my autoimmune arthritis and other chronic illnesses, I’ve written about my skin issues. Right before my diagnosis of Sjogren’s syndrome, I was diagnosed with a benign skin disease called DSAP (disseminated superficial actinic porokerotosis).  I basically get these little circles on my skin. They get hard and sometimes flake.  Over time, they will turn red and look like chicken pox. I’ve tried a zillion creams over the years with minimal results. The only treatment I have found to keep the disease under control is to use cryosurgery (freezing the spots off with liquid nitrogen).  It’s painful. I sometimes have 50-100 burned off at a time. Imagine 100 bee stings all over your body.  It’s excruciating. I’ve learned to do it in stages because burning too many off all over my body tends to cause my arthritis to flare, it’s not a pretty picture.

Recently, my rheumatologist has been saying the she feels my symptoms are becoming more consistent with psoriatic arthritis than rheumatoid arthritis.  To be clear, I do not have psoriasis and DSAP has no autoimmune links and is typically genetic (but no one in my family has it but me). Recent studies have found that there have been cases where people had inflammatory DSAP, but no one has bothered to study me, so who knows what is wrong with me!  I’m a quandary!

Over the years, certain biologic drugs have had an impact on my DSAP.  Humira made it go away almost completely (but did nothing for my joints), Enbrel, Cimzia, and Xeljanz had zero positive effect on my skin and it progressed rapidly.  Now I will say, none of these drugs are made to treat DSAP, so any benefit is strictly an off label benefit.  Some biologics did slow it down dramatically, which I appreciate.  The rapid spreading while on other biologics is probably just typical progression of the disease.  I noticed over the past few months that it was spreading like crazy.  Recently, in addition to my DSAP, I’ve had a red, bumpy rash on my face.  So I went to the dermatologist for two reasons to cryosurgically remove DSAP and to diagnose the lovely red bumps on my face. I was afraid the bumpy red patches was the start of psoriasis…..because it didn’t look like acne or any other skin issue that I have ever had.  55f09698-c1a7-4783-933a-b45cbb9784e2I had 30-35 DSAP patches burned off.  It didn’t look too bad at first…..

But now that it’s blistered, e0ad6f7c-748a-45e6-9c04-1a8ea62861f6

I look like the monster from the blistered lagoon….. (I’m not going to show the spots that turned into blood blisters).

It typically blisters like this only when my inflammation is high.  I go back in a month to have the rest burned off. Hoping that my new biologic has a positive effect and the activity slows down the DSAP activity in addition to reducing my inflammation. I really hope it’s not too much to wish for.

As for the red bumpy patches on my face???  I now have Rosacea.  Yep. One more thing. My pharmacy still hasn’t filled the new prescription for it. I have to call tomorrow to find out if it isn’t covered by my insurance or just not in stock.  So the red patches continue to sparkle uponst my face for all to see.

I know that DSAP and Rosacea are not “serious” issues, but they sure are aggravating, annoying, and just make me feel ugly.

I need to get back to my happy place.  Time to snuggle with my furry ones and get a good night sleep.  I hope all of you have a happy and pain free week.  Be well my friends!

 

I love summer.  I didn’t have the best summer, but regardless, I always hate seeing it come to an end.  Today is also Labor Day.  A day in which we, in the United States, honoring contribution and achievements of American workers.  I am still able to work with my chronic illnesses.  It’s far from easy.  Heck, even my rheumatologist asked me to decrease the amount of time that I work. Unfortunately, that is not something I can do financially.  I admit, that last week, my ankles let me know they were unhappy with my

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Took off with my shoes and saw this lovely sight.

return to full-time employment. So I’m determined to change my sleep schedule and get REST this year.  I’m hoping that rest while working full AND part time will help.

Tonight, I’m ending my summer by watching American Ninja Warrior.  I’m sort of obsessed with this show (and not just because one of the hosts has RA- Matt Iseman). Could you imagine if there was a ninja competition for the chronically ill?  What would it be called, American Spoonie Ninja??  Or Chronic Life Ninja?  Instead of the salmon ladder and the jumping spider, we’d have the vacuum the living room and take a shower without a shower chair events.  The final challenge would be walking up a flight of stairs while carrying a bag of groceries. It would be a hit!

Ugh…if I didn’t laugh…..

I hope you are all having a lovely evening.  Be well fiends!

 

 

I wrote earlier this week about starting my 27th year  in the field of education.  I’m a speech therapist. You wouldn’t think a speech therapist would be on her feet  lot, but I work in schools and what do schools have??  LONG hallways and multiple flights of stairs.  I also work a part time job to pay for Georgia’s medical needs.  Her insurance only covers so much now because she is maxing out of her pet insurance coverage due to her age and coverage limits.  So today was a 12 hour day, in which I work both jobs.  My rheumatologist asked if I could reduce my workload, but sadly, I can’t at this point if I want stay afloat.  It’s such a nasty cycle.  I had some bad days this summer, while I was only working part time, but nothing quite like today.  Makes me wonder if it’s not my RA drugs but my schedule that is failing my body.  I’m sad. I’m in pain. I’m tired of all of it.  Early to bed and early to rise…..to do it all over again.

At least my pedicure still looks good….

Be well friends.

Tomorrow marks my 27th year in a classroom.  I’ve had many different roles over the years.  My current role is as an speech-language pathologist in a public school system.  I love what I do.  Every job has it’s positive and negative aspects.  I love my helping my students become effective communicators, but I despise the paperwork.  Alas, I do struggle to find a balance at times when it comes to my health.

Last week, I started my 8th biologic drug.  I’m back to giving myself shots.  I thought it would be easy-peasy because I’ve been giving Georgia shots of insulin twice a day for months, sadly, it was not.  The needle was a bigger gauge and I just couldn’t get it to work.  I finally found a woman on YouTube who reminded me about the 45 degree angle and BAM, in it went.  I decided to switch drugs because my last biologic was fine as long as I worked 1/2 time. When I work full-time, I didn’t feel it was supporting me enough.  So I opted to switch two weeks prior to the start of my new school year.  I took half of the loading dose last week, and in three more weeks, I’ll take the second half.  How is it going?  Um, so far, not so good.  It’s funny how you live in pain but when it changes, you forget how much worse it can be.  Right now, my pain level is around a 7-8 when I am not working.  To say that I am not nervous about starting work with pain this intense would be a lie.  I’m nervous, but I am going to try to remain hopeful that the second loading dose will make a big difference.  That is really all I can do is hope.

At least I was able to set up my offices.  Big part of the process out of the way.  Wish me luck.  Ice packs are in the freezer in case I need them tomorrow.

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Dog is not normally included in the job contract.

 

 

 

I’m exhausted.  Utterly exhausted.  I shouldn’t be.  I’m not working.  I’m on vacation for two weeks, but I have no energy.  My body aches.  My bones are tired.  I feel 80 years old. I don’t like it.

This was going to be my summer of getting stuff done.  I was going to write my book, clean my house from top to bottom, and travel.  Well, I wrote my book.  Everything else got pushed to the wayside because I’m exhausted. In the back of my mind, I keep thinking “STOP BEING LAZY” but I’m not. I walk up the stairs to grab the laundry basket and I feel like I need to take a nap.

I met with my rheumatologist two weeks ago. She suggested that I switch to another biologic drug.  I think it’s #8, but honestly, I’m too tired to even look it up.  My current biologic is fine in terms of pain.  If I do nothing, I don’t hurt.  My work schedule this summer was 3 days a week for less than 5 hours a day.  It was refreshing to come home from work and not be in pain.  My rheumatologist even suggested that I try to work less during the school year.  I try wish that I could, but my chronically ill dog costs more than double my car payment each month.  I need to work my three jobs to keep up her medical upkeep. People don’t understand why I do this, but I adore her and cherish each moment I have with her (ok, I may not cherish when she refuses to come in while it’s pouring rain, but I digress)…  She is my best friend and lives with more discomfort/fatigue/blah feeling than I do, yet she never complains.  She is feisty, smart, and oh so full of love. I’m lucky to be her mom, so I work hard to give her a good life .

It’s ironic how many things have popped up in my life as a result of having Georgia as my dog.  I’ve made friends around the world through Cavalier King Charles Spaniel rescue groups.  I’ve been interviewed for books, news articles, radio interviews and more regarding her chronic illnesses. I’ve traveled to events and began volunteering as I take her to hospital and schools as a therapy dog. Now I’ve written a book that documents our life together. It’s never been a goal to write a book.  Blogging has always been a way for me to dip my toe in the waters and stretch my skills. Now that my body is rebelling with being active, writing has been something I can do without much difficulty. The book was a challenge that I struggled to achieve, but with Georgia as my inspiration, I kept focused.  Now the book is completed and available for purchase.  A portion of the proceeds will go to Nonni’s fund for rescue Cavalier King Charles Spaniels to receive the medical care they need.  Feel free to check out the book here.

 

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https://www.amazon.com/s/ref=nb_sb_ss_c_1_15?url=search-alias%3Daps&field-keywords=making+lemonade+with+georgia&sprefix=making+lemonade%2Caps%2C244&crid=1NVKAC1EOTH06

I’ve been neglecting my blog this past month to focus on a book I was writing.  I had previously written 4-5 drafts before finally settling in a banging out a complete draft that I didn’t hate this summer.  I sent it to an editor and just  uploaded my book to be published.  It’s been a labor of love for sure because it is about my chronically ill dog, Georgia Grace.  I know we are in the twilight of her life and often, I am asked if I “regret” having her with all of her horrible illnesses combined with all of my chronic illnesses.  My answer is NEVER.  This dog has brought so much to my life.  She has an inner light that attracts goodness.  It’s been emotionally and financially exhausting being her mommy, but it’s been my honor to love her.  My goal is to raise some money for a fund that helps rescue dogs (primarily Cavalier King Charles Spaniels like Georgia, but other breeds as well) get medical treatments they need.  They helped us when Georgia was hospitalized back in November.  They will get a portion of the proceeds and the rest will cover the publication of the books I get printed.  I had no idea how much it cost to put out a book.  It was not what I expected and has been true learning experience.

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Georgia story should have been short and sweet, but her strong will to live and my knowledge of managing chronic illnesses has made her life story longer than anyone expected.  I’m thrilled to tell her story to all interested in learning about her.    When I tell people I wrote a book about my dog, I get the oddest looks.  Some say, “About your dog?”, with a disgusted face, or “I want to write a book, too!”  It’s kind of funny.   Those who know and love us, seem to be excited for us.  It’s truly a new adventure and I’m looking forward to how the book is received by others.  Regardless, I knocked an item off of my bucket list.  I’m proud of myself and I’m proud of the life I have given my sweet Georgia.

I hope you are all feeling well!  I’ve been working 3 days a week for 4 hours at a time, this summer, and it has shown me that I feel much better when I work less.  Sadly, I can’t afford to not go back to my regular work grind in September.  Good thing I love what I do.  Speaking of my job, I did have Georgia certified as a therapy dog recently.  Here is an amazing video that one of my students created of Georgia’s first visit to my job.  I absolutely love it!!

Every year, WegoHealth has their annual Health Awards.  There are various categories that honor Patient Advocates/Leaders who are active on various social media platforms.  I’m so touched and honored to say that I have been nominated.  This year, people were kind enough to nominate me in two categories.  Click on the badges to vote for me in both categories:

Best in Show: Blog

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&

Hilarious Patient

Advocate

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Thank you so much!  It truly is an honor and I love being in the company of so many great health activists who provide me with mentorship, inspiration, and friendship every day.  Please check out the other nominees and vote today!  Thank you so much!!

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