As My Joints Turn

My Autoimmune Soap Opera

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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I love music.  I love concerts.  The more my disability progresses, the harder it is for me to attend concerts.  See I’m one of those people in the middle.  I definitely struggle with mobility, but I’m not truly in need of a wheelchair.  I’m a “need-a-cane-some-of-the-time” kind of person.  Concerts tend to be in big venues, which means a lot of walking AND possibly standing.  Now as a lover of music, I don’t mind…..but as a person who can’t walk easily, it’s hard.  Some people I know have stopped going to shows because of their physical limitations.  I refuse to do that because I love the whole concert experience.

Last night, I saw the Foo Fighters for the 4th time.  They are my favorite band and I try to make a point to see them when they are in town.  They typically play at the BB&T arena in Camden, NJ.  This arena has an amazing lawn area in which you can see the stage in the covered pavilion in front of you, and the gorgeous Waterfront view of Philadelphia to the West.

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Photo credit: Flocku.com

It’s a stunning place to see a show…..unless you are differently abled or fall into that in-between category like I do.  Why?  Well, for one, parking.  I arrived in Camden at 7:30.  A little late because Georgia needed her insulin at 6:30.  I live 45 minutes away from the arena, so I actually made good time.  Parking is pretty much directed by police.  I was directed to a lot 1 mile away from the venue.  I asked for handicapped parking multiple times and was directed by cops that I had to keep going away from the venue.  Once I got to a lot, I asked again for handicapped parking and was told “Because we are so far away, there is no handicapped parking”.  Uh, what???  (Did I mention it was $30 to park, too??) It took me about 20 minutes to walk the 1 full mile to the venue gate.  According to their website, they have 90 handicapped parking spots. Honestly, knowing I was a bit late, I was fine with not getting one, but had hoped I could at least get closer than a mile away.  Then I had to stand and wait another 30 minutes to clear security.  Once inside, I hiked up the hill to find my friends.  It was about 8:30 by this time and my ankles, knees and hips were on fire.  It didn’t matter though, because the Foo Fighters were on stage and the music makes everything better. I was proud of myself for being able to walk so far!

This “better” feeling was short lived.  After an hour of standing on the hill, I was starting to struggle.  I was torn between leaving my spot to go sit for a while (and not be able to see/hear the concert) or sucking it up longer.  At one point, I thought about going up to the retaining wall and leaning against it but there was no room. Luckily for me, a couple in front of us suddenly got up and left.  Prior to leaving, they told my friend that they were leaving their chairs and asked if we wanted them.  A MIRACLE!!!  Seriously,  at this point, I was close to tears from pain and trying so hard not to let it show.  I’m sorry the people in front of us weren’t having a good date…..but in a way, I’m not!  Their lousy date resulted in me getting a seat!!  Low to the ground and I couldn’t see the stage, but seats regardless, a seat is a seat when you need it.  My aching hips, knees, and ankles rejoiced as I sat there and decompressed (literally!).  You know that feeling when you are in so much pain, and you get that brief reprieve?  It was heaven.  I turned to my friend and admitted I didn’t know how much longer I would have lasted without sitting down.  My love of the Foo Fighters and being determined to not let my disease ruin my night kept me going but it was so tough.  Pain definitely clouded my whole experience.  It was great, but I couldn’t stop focusing on how much pain I was in and how hard the next day was going to be.

Now I am the type of person who uses the handicap spots only when I need it.  I use it at work and grocery shopping.  If I feel good, I tend to not use them at all so someone else has it available.  I know people abuse handicap parking, but I am not one of them.  I use it to decrease or compensate for the amount of pain that I know will accompany and daily living task like grocery shopping and walking the long halls at work.  I’ve become so accustomed to pain over the years that when I experience no pain, it’s almost a shock to my system.  Some would say the fact that I was able to walk to two miles to and from the venue means I don’t need special parking.  They would be wrong.   Imagine standing on a bad sprain, in both ankles and knees, in addition to back and hip pain.  That is how I felt throughout the concert.  Since I paid a lot for tickets and I love the band I sucked it up but worried about getting back to my car.  Thankfully, I had people with me.

The other day, I was running errands and I came across this sign in a chiropractor’s office:  img_8983-1

A nice sentiment but for people like me, who live with a chronic pain disease without a cure, it’s kind of unrealistic.  Pain is not my lifestyle “choice”, but it impacts my lifestyle choices.  So although I like the sentiment of this sign, I have to say it’s aggravating  because when a disease takes over your life and impacts the way your joints move, pain is a reality.  Going to a chiropractor may help a bit but after 19 years of living with multiple autoimmune diseases that cause pain, I’m highly doubtful that anything is going to eliminate my pain altogether.  (Trust me, I’ve tried everything under the sun!!)  So basically, I feel like the sign is telling me I’m making a choice to live in pain, when in reality, I have no choice but to live in pain.

My neighbors were hanging out last night when I got home.  They thought I was drunk because of the way I was walking.  Nope, just in pain.  Today has been rough too.  All the projects I had planned for today are pretty much not happening or are happening at a super slow pace.  I had to break down and take a pain pill.  It’s the only way I can make it up and down the steps to use the bathroom.  All of this because I wanted to enjoy my favorite band live.

Now I will never regret going to a Foo Fighter’s concert, I just wish the venue offered better options for parking.  All of my requests for handicapped accessible parking were ignored, like I was invisible.  Just like my illness.  Ironic, right?  I guess in times like these, I have to expect to be in pain because there are no other options when my “lifestyle” includes going to concerts.

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Thanks Foo Fighters for the great show!

I’ve written many times about my fear of losing health insurance due to my pre-existing conditions.  Recently, the Justice Department has decided to not defend the Affordable Care Act in court.  Without defense the ACA could be determined to be unconstitutional, thus illuminating the protections put in place for people with pre-existing conditions.  According the the Department of Health and Human Services, as many as 130 million adults under age 65 in the U.S. have pre-existing conditions that could result in their not being able to get insurance coverage in the private market.

Now Politicians often state ignorant things about people with pre-exisitng conditions.  My senior, Pat Toomey referred to insuring us as trying to insurance “a burned down house” after the fact.  Recently, Florida Governor, Rick Scott stated, ”

“I believe that if you have a pre-existing condition, you need to still be able to get health care, so it’s very important to me,” Scott told reporters in Tallahassee.

“I think everybody ought to be able to get health care insurance. I do believe that you’ve got to start working to fix the law and that law caused our premiums to skyrocket. But I don’t believe in grand bargains, I believe in incrementally trying to make change. We’ve got a lot more competition. We’ve got to reward people for caring for themselves.”   (click here to read the article in full)

What did I just read???

We’ve got to reward people for caring for themselves. 

We’ve got to reward people for caring for themselves.

We’ve got to reward people for caring for themselves.

WHAT?????

Is this man insinuating that people with pre-existing conditions did not care for themselves prior to onset?  Now he did mention cessation of smoking programs as one way to “reward” people for caring for themselves.  Prior to getting sick, I was active.  I ate healthy and worked out 3-4 times a week.  Ironically now as a person with multiple illnesses, I am constantly trying to take care of myself with doctor appointments, diets, and taking my prescribed medications to maintain my ability to function and move.  What reward do I get Governor Scott?  Higher payments for medications?  Higher bills for doctors visits??  I am constantly doing all I can to care for myself.  Are your incremental changes to healthcare going to work in my benefit or against me??  Inquiring minds want to know.  Sick people are waiting and we are sick and tired of always having to wait.

For example, I got a call from my endocrinologist’s office today.  My latest blood work still indicates my thyroid disease is not controlled.  Her assistant called and said, “Although the results are not good, you are moving in the right direction, which is good”.  Hmmmm…..So not good is good.  I’m still not sleeping, losing hair in clumps, and gaining weight no matter what I eat or don’t eat.  The right direction sure feels wrong some times.  As a patient, I’m so tired from having to be patient.  I know thyroid issues take a while to change and resolve, but I can literally feel my body falling into exhaustion.  Lack of sleep is causing my fibromyalgia and RA to flare.  Body pain wakes me up when I move in the night, so even when I do finally fall asleep, I wake about 10 times a night.  Yet, I’m told that I have to wait to feel better.

I try all kinds of remedies to find ways to help me sleep at night (meditation, herbal teas, breathing techniques, not napping during the day), but Graves disease is in control right now, so nothing works.  I’m trying so hard to do the right things to help myself get better.    I am taking care of myself the best I possibly can.  So I have to ask, hey Governor Scott, what is my reward??

 

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I’m the type of rheumatology patients who has “normal” blood work.  My vitamin D is typically wonky but everything else come back clear.  No explanation as to why I’m so tired.  No explanation for my swollen joints.  Now don’t get me wrong, I DON’T WANT anything to be wrong, I just want an explanation. I just want to know WHY I feel awful most of the time.  It’s not too much to ask for, is it?

Blood-Test-Results9You would think having clear blood work would be a good thing.  Yay!  Nothing is wrong with me.  Yay!  I’m healthy……but sadly, I am not healthy.  I feel like hell most of the time.  I struggle with daily activities that most people take for granted.  I struggle to walk, shower, do my hair, clean my house, walk my dog, and take out the trash.  Don’t even get me started about laundry….it’s pure torture.  Each time my blood work comes back normal, I have that little voice in the back of my brain call out to me with “Your a hypochondriac!!”  I feel like people around me will judge my wonky gait and baggy eyes and think “She’s just looking for attention.”  No kidding….almost 20 years into living with this disease and I still heckle myself.  Now I KNOW I am not faking anything.  The pain is real and the swelling of my joint is all too real…..but having a tangible explanation…..I thought it would be a relief.

NOPE!!!  I got blood work back and it was a hot mess.  My Graves Disease was out of whack and I’m running hyperthyroid, my red blood cells and hemoglobin are off, and I am anemic.  Protein in my blood is probably the reason why I have had edema in my legs for months.  There are REAL reasons why I feel lousy…..and instead of feeling relief.  I feel scared and I feel more tired than I did before.

Until my next round with the blood lab, I’ll do what I was told and will focus on getting healthy.  Day by day…..

 

 

 

 

 

I originally wrote this piece as a part of Rheumatoid Arthritis Blog Week.  I decided to redo it a bit for World Autoimmune Arthritis Day.  I often need to remind myself of all I have been through with this disease.  Also, to show others that I took me almost 30 years to get any sort of diagnosis.  Thirty years of feeling like a hypochondriac.  Thirty years of struggling to understand why I hurt.  This is a letter I wrote to my pre-diagnosed self.

 

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Dear Pre-diagnosed Me,

Remember when you were 14 and your knees started to ache.   You were told you had tendonitis and spent weeks on crutches throughout the years until you were 20.  That sucked.  At 20, you had arthroscopic surgery which showed nothing but inflammation.  It took you months to recover.  Your family and friends thought you were a hypochondriac because you complained how much it hurt during recovery. Yeah, that sucked, too.  Then at 22 you started running fevers, couldn’t use your arms and were in pain constantly….and you were told you were too stressed and to work out more.  That one sucked most of all because your doctor made you feel like it was all in your head.  You didn’t have another major symptom until you were 31 and you were very unprepared.

Your pain started in your shoulders around February.  You ignored it for a month because you were positive it was your thyroid levels being off that caused the muscle aches.  Your doctor prescribed muscle relaxers and sent you on your way.  At this point, you could barely uses your arms.  Driving with your thumb only became the norm.  By Thanksgiving of that year, you were unable to walk without a serious limp and couldn’t shop on Black Friday due to pain (your annual father/daughter day).  Your dad took one look at you and said, ‘There is something really wrong with you if you can’t shop’. You were scared.  Around Christmastime you were diagnosed with Sjogren’s Syndrome.  You were told that it would take 8 weeks for medication to make you feel better.  It ended up taking around 6 months.

You hit lows and serious lows over the next two years.  You lost your sense of identity.  You were no longer an able-bodied person.  Then your rheumatologist will retire.  You’ll find another rheumatologist who will tell you nothing is wrong with you because your blood work is good.  He’ll want you to go off all of your medication even though all of your joints are swollen and red.  When you ask why your joints are like this, he’ll respond, “I have no idea.”  You keep searching and find another doctor who actually listens to you.  By this time, you’ve been living with your diagnosis for 5 years.  Slowly, this rheumatologist will help you find a cocktail of medication that helps you feel somewhat human again.  It took almost 2 more years to have a good day.  But it came.  You still have flares from time to time.  There are days when walking is very hard and the fatigue is overwhelming, but you also have good days.  Now you are on a biologic that really works (after 5 years of ineffective step therapy).  You did it.  Never forget. Never stop fighting

Through social media you found others like you who wanted to spread awareness and see change within the #rheum community.  You joined IAAM and cofounded IFAA.  You are working with others to make a difference. Your journey is long and painful, but you are stronger than you know.  Never give up.  Believe!

-Kelly   32845223_10216969336291823_8192438358052438016_n

As we celebrate #WAAD18 let’s remember to draw strength from our community and spread awareness about #autoimmunearthritis to the world.

 

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I was recently asked to write for the #spoonie group The Unchargeables.  This is my first piece for them.  Check them out.  There are some great blogs on their site.

Social Media: It’s a Stranger Thing…

The recent security issues on Facebook have a lot of people wondering if they should delete their accounts. I see the validity of the concern, but in no way would I even consider deleting my account. Why? Well, it’s quite simple.  (read more)

http://theunchargeables.com/social-media-its-a-stranger-thing/

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