Reflecting Upon the Roots of My Cause/National Invisible Chronic Illness Awareness Week 2013

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Busy I have been – in fact, I’m about to head out again- but I’m not so time-crunched that I would bypass the chance to talk about what basically drives this blog (and, thereby, myself).  Sept 9th through 15th is National Invisible Chronic Illness Awareness Week, which is a time to recognize the unrecognized:  those who live with health conditions and diseases whose symptoms are too quiet to get ample attention, and yet are just as draining, just as painful, and every bit as live-changing as those who have illnesses that are empathized with more freely.  Knowing that some symptoms  and signs of ill health are more obvious than others does not a justify ignorance.

I have autoimmune arthritis as a result of Sjogren’s syndrome.  While my pain, dry eyes and mouth are not severe enough to keep my from working or going to grad school,  they still require constant attention.  I am not allowed to forget I have this.  For instance, if I for some reason forget to take my pilocarpine, a saliva-stimulating agent, my thoat will start to feel as parched as the desert.  So if I don’t have something to drink or gum or hard candy nearby, sometimes I feel like I’ll choke to death.  And yet I keep reading articles about Sjogren’s written by people from news sources (that shall remain unnamed) who clearly don’t have a clue what it’s like to have this condition.  I have read things such as, “it’s not life-threatening,” that it’s a ” mild condition,” and my all-time favorite- it’s “more an annoyance than genuine illness.” Yes, someone actually put that drivel to print.

So Primary Sjogren’s syndrome is not nearly as awful to have as it’s autoimmune connective tissue disease cousins, Lupus and Rheumatoid Arthritis.  It usually doesn’t require prescriptions of expensive biologic drugs such as methotrexate; it doesn’t require its sufferers to get infusion treatments in the hospital or require them to walk with a limp or distort the bones and joints of their fingers or toes. But it can be found as a secondary diagnosis to these illnesses (Secondary Sjogren’s syndrome), and it can lead to complications such as conjunctivitis, costrocondritis, and periodontal disease.  And, rarely, people diagnosed with Sjogren’s can develop lymphoma, a type of cancer.  So in that sense, I don’t believe my illness should just be so casually lumped into that “less serious illness” category.  I can assure you, I am very serious about it.

And let’s not forget my random digestive complaints, which resulted in continually inconclusive testing.  I only know that I have a hiatal hernia and imaging offered that the region around my terminal ilieum was “cloudy” at best.  I get jabs of pain all the time.  I will never forget how badly I was treated by that emergency medicine doctor at NYU when I believed I might have had appendicitis – or how he made fun of me.  Hey, he even laughed at my predicament – for a couple minutes got actual pleasure out of mocking my completely legitimate complaints.

And it miiiiight have been a little easier to deal with had the doctor been a little less upbeat.

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Hmm…

Okay, now I’m flat out angry, and this was over two years ago!  The point is, you don’t forget when you become the unwilling victim of an invisible illness stigma attack.  And it is for this reason that I write and educate myself and advocate for people like us.

Any more evidence of injustice I encounter only adds more fuel, more ammunition, and more drive to my goal to broaden the mindset of even one person.

Please visit InvisibleIllnessweek.com

Photo sources: invisibleillnessweek.com, chan4chan.com (Via Google Images)

Another Waiting Game

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life-quotes-i-am-so-sick-of-waiting

So I’ve been so busy lately I never had the chance to write an update post about my kidney “situation.

I went to my GP primarily for a probable knee sprain or strain due to jumping off my bed like an impulsive idiot; while there, I mentioned my other pain problem.  Since this doctor is tremendously thorough, she suggested some imaging for my knee to rule out a blood clot (negative) and said that I could very well have some stones (kidney stones) that were so small they didn’t make me pass out from the pain (like they did to my dad a few years back.  Pulled over and passed out on the side of the road he did).

Now I’m not entirely certain, as knowledgeable as my GP is, that she’s all that up to speed on the freak shows that autoimmune illnesses can be.  Still, she seems more open-minded and receptive to all the possibilities than most physicians I’ve been to.  After a negative urinalysis, the only thing she needs to review are the results of my pelvic, abdominal, and lower back sonogram.  I am exceptionally proud of myself for keeping my cool and not jumping off the table during the tortuous process. Then again, my sonographer made me feel relaxed and comfortable, but only during the second time I saw her.  For the vascular sonogram of my legs, I didn’t have enough time to mentally prepare myself, and thus was a near nervous wreck.

I find that if you tell the health professional ahead of time of whatever things scare the holy heck out of you, they will usually find some humor in it (at your expense, but it’s better than none at all).  Then you are able to establish an easy rapport with them and barely notice when the procedure is finished.  I only wish this worked at the dentist…

To be continued, hopefully by this Friday.  Color me one inpatient patient.

spinnerAimSignIn Waiting_for_Snow____by_StudioQube

Image Sources:

http://bestquotesaboutlife.org/life-quotes-140-sick-waiting/

http://studioqube.deviantart.com/art/Waiting-for-Snow-45172842

Some thoughts on being “too young” to be sick

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Too young to be sick My autoimmune arthritis experience began with the belief that I had carpal tunnel syndrome, due to constant achy wrists.  I was 29 years old.  The notion wasn’t too far fetched because I work on computers all day long and a great deal of typing comes with the territory.  Prior to my diagnosis, I would hear that I needed to “stop working so hard,” since I was “too young to get carpal tunnel.”  Kindly coworkers would suggest anything from vitamins to possible surgical intervention.  I would also get strange looks whenever I wore a wrist brace to work (at one point, I wore one on each hand!), as if I wanted to get a lighter workload.  As if I’d brought this on myself.

Wrist Pain small

Well, carpal tunnel it wasn’t, since my ANA (anti-nuclear antibody) titer came back rather high, requiring further testing.  My coworkers would not, could not, or simply did not want to believe it.  I was, simply, “so young”.  They would respond with “just wait until you’re my age,” or even “whatever it is, it can’t be that bad.  You’re young.” Or, and this was the worst response of the bunch, they would sadly shake their heads.

Who wants to evoke pity?  I thought, “Is this what I have to look forward to for the rest of my life?”  I pondered the stigma that surrounds chronic invisible illness in this country.  I had already been exposed to it while in various emergency rooms across NYC, facing less than compassionate doctors and nurses.

Most of my experiences post-diagnosis have been positive, however sometimes I do feel that as a Sjogren’s patient I occasionally get the brush off because the degree of my illness does not seem as severe as someone older than me or who has a concurrent diagnosis of Lupus or Rheumatoid Arthritis.  However, I have never once been told that my Primary Sjogren’s syndrome could develop into Secondary Sjogren’s if either RA or Lupus makes itself known.

You get used to it

Being young really is a liability.  I had to change my career plans around.  The near constant pain, fatigue, and general feeling of not being on top of my game made me decide not to go for becoming a nurse practitioner and to instead try for something less stressful.  Stress triggers painful flare-ups.  I wish people would realize that flare-ups are real, and that even though they are just not as visible as a cane, they still represent a very real disability: Autoimmune Arthritis.

 

Image Sources:  Restministries.com

abcnews.go.com

SickGirlDiary@Tumbler.com

Countdown to World Autoimmune Arthritis Day (It’s FREE!!!)

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keep calm AAAs a proud volunteer for the global advocacy group the International Autoimmune Arthritis Movement (www.iaamovement.org), I’m spreading the word about World Autoimmune Arthritis Day 2013, which takes place in two short weeks! It’s a great opportunity for you to find out all you can about autoimmune arthritis from the sources themselves – panels of patients, experts, and 36 nonprofit groups will come together in real time to answer questions, provide education, and promote awareness.

This year we’re tripling in size from last year, with the addition of Nonprofit Booths, Vendors  (show support with merch such as T-Shirts, Mugs, Jewelry, etc.), and a combined Apple/Android app and Virtual Booth entitled A Day in the Life with Autoimmune Arthritis” (I will be contributing to this).

World Autoimmune Arthritis Day is celebrated on Monday, May 20th. This LIVE, Virtual Convention will be broadcast for 47 straight hours, starting at 6 pm ET/USA on May 19th and ending at 5am ET/USA on May 21st.

Also, did I not already mention that it’s a FREE event?

For complete information, please visit:

http://worldautoimmunearthritisday.org/expo

Thy Nightmare Hath Returneth

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homer screamSo things have been going downhill in this spring.  To begin with, I somehow injured both knees, thigh, and other miscellaneous parts of both legs after idiotically jumping off my bed just to turn off the heater.  My appointment with the sports medicine doctor was postponed until this afternoon, and I hope I didn’t screw up anything further by doing what I shouldn’t be doing: walking.

I am also back to being perplexed because the nonstop pain, odd fevers, near vomiting, and other signs that something f’ed up is wrong with my body that showed up early last year are back.  Two days ago, my temperature rose to 100, which might not seem out of place to some people with an autoimmune condition, but it’s more than a blip on my radar.  The pain is more of a tenderness, a bilateral ache that I at first mistook for a bad urinary tract infection or the start of a kidney infection.  I did the proactive thing that any budget conscious girl would do to avoid having to visit the doctor twice in one week.  I drowned myself with cranberry juice (diluted in water; otherwise pure cranberry juice is tart as hell) and added some liquid Christopher’s Kidney Formula to any herbal tea I drank.  I ordered it last year from iHerb.com when this trouble first transpired.  It contains herbs that are supposed to magically destroy kidney infections: marshmallow, uva ursi, parsley, and juniper berry, to name a few.

I soon decided that not knowing what was wrong with me was tantamount to psychological torture,  so I sprung for a store brand UTI test.  Well, as expected, the test strip never changed color.  It was negative for both elevated white blood cell count and protein.  And yet right after that, the crazy low-grade fevers started up again.  I was so close to contacting a nephrologist yesterday, but I curbed this urge and hope that my GP might be able to shed some light on this and possibly refer me to someone.

But if I hear her mention that it could be my muscles doing this, I swear it’s the last straw. Why?  Last year, I brushed all these nonsensical symptoms aside in favor of the verdict that I was vitamin D deficient.  Having low vitamin D can cause an abundance of freaky symptoms, including pains of any variety.  The difference this time is that I am on them again and almost done with my course of treatment (50,000 IU once a week for eight weeks).  Determined to find a cause, any cause, I uncovered such possibilities as:

  • Renal cysts
  • Lumbar Radiculopathy (basically, my the nerves in my lower spine are overreacting.  This could have something to do with my leg pains travelling up to my back because I haven’t had a chance to rest them properly.  But what about the fevers?!?!?)
  • Gallstones (God, I hope not…)
  • Candida infection (means my chiropractor was right and I still never listened)
  • Obstruction of the ureteropelvic junction (UPJ)
  • Retroperitoneal Fibrosis (idiopathic disease, a/k/a disease of “origin unknown,” in which fibrous tissue overgrows areas such as the kidneys or ureter.  Shudder…)
  • Crohn‘s disease (Oh please, let’s not go there again. I can’t take Dr. Fart Jokes)

and my favorite…

  • “Nutcracker syndrome” (Having nothing whatsoever to do with the popular Christmas ballet, it’s when the left renal vein somehow gets smooshed between the superior mesenteric artery and the aorta.  I picture Homer Simpson up there humming Dum di dum dum dum dun dun dun dun dun dun dun di dun di dun….in absolute terror.)

I also have to note as someone with Sjogren’s that it’s entirely possible to have kidney involvement in the form of interstitial nephritis or glomerulonephritis.  For more information on these perfectly enjoyable kidney conditions, please see the links below.

And off I go to (probably) hear the same crap that I always do:

“We didn’t find anything.”

Sources: http://emedicine.medscape.com/article/1958746-overview

http://www.niams.nih.gov/health_info/sjogrens_syndrome/

http://www.uptodate.com/contents/renal-disease-in-sjogrens-   syndrome

http://superflygallery.com/homer-simpson-pop-art-the-scream/

In Appreciation

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Virgo (Aug. 23-Sept. 22): One of your greatest assets is the ability to take the ideas of others and expand upon them in ways that could prove beneficial to everyone involved. Don’t waste this gift.  

Well, I certainly am trying my best not to!  So excited to be a health writer.  I am finally where I want to be career-wise.  It feels more right than anything, the missing puzzle piece so to speak.

And thanks to my professor over at NYU, Holly St. Lifer, for showing me how it’s done!

Source: New York Daily News

Touching upon a few things while avoiding touching my eyes

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So conjunctivitis is the latest from the itis family that’s taken up residence in my body.  It is a rapid bloomer that made its first appearance a little before Christmas and stuck around (heh) off and on nearly every month of 2013.  At this very moment, I’m unsure whether it’s truly gone because I felt that I caught it early, therefore it won’t evolve into the painful, glue-in-my-eyes stage that tormented me the first time I got infected.  I’ve never had pink-eye, as it’s so lovingly dubbed – never had it as a child, so I would certainly never fathom its presence in my adult eyes.  It is no joke, and you cannot touch your eyes when you get it.  I repeat: DO NOT TOUCH YOUR EYES.  Go to your physician asap, or better yet, ophthalmologist, to rule out any other possible causes.  You will likely be prescribed antibiotic eye drops.  The most commonly prescribed is Polymyxin B-Tmp.  I have to apply these drops four times a day for an entire week.  As with any other antibiotic, follow the directions to a T.  Don’t stop if your eyes begin to feel better.  You need to kill that slime inducing monster!  So use it for the entire week.  Because I figured out too late that all signs pointed to pinkeye (waking up to dull yellow sticky goop, pain, and intense itching), and my eye clinic was inconveniently closed for the week, I found a general practitioner who took new patients in on a Saturday.  She advised me that I would stop being contagious about two days after initial use of the drops.  I tried to cancel meeting with by boyfriend that weekend, but he decided to take it in stride (not recommended.  He has an immune system of steel).  However, I don’t think he’s been so lucky this time around because we live together.  I’m so sorry, baby.  But I did warn you…

Nevertheless, here are a few “rules to live by” to help you win the battle against the sticky yellow demon: 

Change your sheets and towels often.  Don’t use eye makeup.  Suck it up and throw out what eye makeup you do have (not a fun task if you are used to high end products!) because it has now been tainted with bacteria- no way around that.  Just in case pieces of mascara fall off and migrate into your eye, you will want to get that out, and guess what?  Anytime you touch your eyes, your now contaminated fingers will spread the bacteria to whatever you handle next.  Shrug off any unfortunate comments that you “look unusually tired”.  This need not be forever.  Don’t wear fuzzy anything because it will likely travel to your eyes and you will want to remove that, too, but for the love of all that is holy, YOU CAN’T TOUCH YOUR EYES!!!  Say no to angora.  Save petting your soft, furry animals until you’re in the clear.  Who knows if you could pass conjunctivitis onto them?  Finally, you will need to carry around some antibacterial hand sanitizer everywhere you go. It will be maddening, and you will curse fate a great deal, but it will be over if you follow those steps.  Whew.

In other news, my reason for not posting in this blog so frequently is, lo and behold, I did receive a diagnosis of Sjogren’s syndrome not too long ago.  From my research and ever increasing experience, I’ve learned that many of my symptoms stem from that.  The primary purpose of this blog is to explore the feelings surrounding a lack of diagnosis.  So now onto my second purpose: dealing with the psychological effects of a lack of diagnosis.  What has my lack of trust in the American medical establishments instilled over time and treatments done to my psyche?  Did I feel stigmatized?  Do I still to this day?  I’ve chosen to explore these questions in the form of essays and articles, and I hope to reach out to others who have been driven nearly insane by a backwards diagnostic process.  Specifically, I hope to get the perspectives of those with autoimmune conditions, officially diagnosed or suspected, and get to the heart of their frustrations.  I want to document these stories in a book because they must be told.  Their words, as well as mine, need to make it out to the rest of the world, and I hope that medical professionals will decide to give it a read.  If I change the mindset of just one doctor out there, I will have succeeded. 

 And…time for more drops!