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Posts Tagged ‘rheumatoid arthritis’

Comment! Pick someone else’s blog post and write a comment to them. Write that comment as your post for today and link back to them to let them know you were inspired.

There’s a blogger with a post that I REALLY want to comment on. I found it completely by accident one day when I was surfing Facebook or Twitter (or both) and happened to click on a link that interested me for whatever reason and was astounded by what I read. This person has MG (myasthenia gravis) first and type 1 diabetes second. I specifically mention them in that order because this is how the writer presents them to her reader. She’s had MG longest and explains that type 1 diabetes came along but is mostly viewed as a secondary annoyance rather than a primary concern.

What?

Wait.

Huh?

It blew my mind. The idea that someone could consider the disease I’ve struggled with for almost 32 years to be a secondary concern made me stare at the computer screen as though the text had suddenly become written in a language I didn’t speak. But then I stopped and thought about it. And came to the realization that I do the very same thing. I too have two chronic diseases – type 1 diabetes and Rheumatoid Arthritis (RA). I also specifically talk about them in that very order.

Type 1 diabetes was my original diagnosis from when I was seven years old. I was diagnosed with rheumatoid arthritis when I was in my 30s. Maybe it’s the age at diagnosis, maybe it’s the perceived cellular damage from the disease, but diabetes has always been my primary concern. RA has remained more of a, well, nuisance. When I was first diagnosed I was heartbroken. When I researched the chemotherapy medication my doctor wanted to put me on (whose list of side effects includes DEATH) I was fearful. However, when I finally got over my self-pity party I actually thought, wait, I just need to take a pill for this? BRING IT ON. After diabetes it just seemed so simple.

So I read this person’s blog and had an epiphany. There are people with RA reading my blog and thinking the same thing. These are people who’ve suffered much worse with this disease and can’t imagine placing another disease in a higher priority. It made me think about that fable. You know, the one where a group of people go in a room and put all their troubles on a table and have the option to take someone else’s? That’s right, the one where they end up taking back their own troubles and going home.

I would so totally do that with type 1 diabetes – it’s the evil I know.

 

I would comment on the blog that inspired this post – only I can’t find it! I’ve looked everywhere. I know it’s out there though, so if it’s your blog, please let me know and I’ll comment. In your post, you had mentioned that MG means you have to rest and diabetes means you have to exercise (if that helps)…

 

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Write a health acrostic for your condition, hashtag, or username! (acrostic = a poem where every letter of a word serves as the first letter of a word or phrase i.e. DOG = Digs Others’ Gardens)

RA = Really Aggravating

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Write about your favorite social network. Do you love Twitter? Facebook? Pinterest? Why?

My favorite social network when it comes to my health issues is Twitter. I love it. A lot.

While it’s a lot like shouting your thoughts out in a megaphone in the middle of Times Square, it’s somehow more intimate than Facebook at the same time. Maybe because the people on Twitter have a genuine interest in what you have to say and what you’re going through. I mean think about it – on Twitter they could follow ANYONE. There’s no limit, no friendship required, they CHOOSE you. When you send a friend request on Facebook out to anyone really, there’s SOME kind of social obligation to accept it for the most part. You’re friends, family, coworkers, fellow high school alumni, or you know you’re going to keep seeing this person at parties for the REST OF YOUR LIFE and don’t want to be confronted as to why you never accepted their friend request. (People really do that – it’s awkward.)

But on Twitter you just put some information out there – my profile mentions my type 1 diabetes and rheumatoid arthritis – and suddenly a world of people interested in what you have to say or in similar situations opens up to you. The Diabetes Online Community (DOC) in particular, is amazing. I’ve made friends, found doctors and information on updated medical equipment and pharmaceuticals, and found people experiencing the same thing AS ME. It’s inspiring, comforting, empowering.

So, in short, I love Twitter. And to my 600+ followers – thank you.

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Day 3 - HAWMC - A Picture That Symbolizes My Condition

Rheumatoid Arthritis. The joints in the fingers on my right hand that will never again allow my old rings to pass over them.

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Word Cloud. Make a word cloud or tree with a list of words that come to mind when you think about your blog, health, or interests. Use a thesaurus to make the branches of your “tree” extend further. http://www.wordle.net/

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5 Challenges. 5 Small Victories. Make a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small victories) that keep you going.

Most Difficult:

  1. Constant worry. The other day my left big toe was hurting me. Did I think about the fact that I had run 3 miles and walked 2 and then spent several hours in heels? No. I worried about whether I was developing neuropathy. For the record, my big toe is now fine.
  2. Getting prescriptions filled. ONE OF THE MOST ANNOYING ACTIVITIES. The doctor’s office didn’t respond to the pharmacies request. So this now involves phone calls to the pharmacy, phone calls to the doctor’s office, phone calls to the pharmacy again – what, you STILL haven’t received the prescription?!? Yup, another call to the doctor’s office. This happens so often with ALL my doctor’s (at some point or another).
  3. Getting my pump replaced.My pump breaks. A lot. My friends with type 1 diabetes ask what the heck I’m doing with the pump but honestly I think I just have bad pump karma. So every time I need a new one, it’s about an hour on the phone (at least). Then, when the new pump arrives, it’s programming it. But at least now my daughter’s old enough to help.

    Programming pumps
    Yay, she thinks it’s FUN!!

  4. Going to bed. If you’ve ever had an overnight low (and chances are that if you have type 1, you have) then you understand what I mean. When you’re feeling especially fragile, going to bed can be a bit nerve-wracking.
  5. Daily interruptions. Stop and do a blood sugar. Stop and take your medication. Stop and make necessary doctor/pharmacy/pump manufacturer phone calls. Stop and treat a low blood sugar. Do another blood sugar or six. Stop and treat a high blood sugar. Change your pump site. Change your reservoir. If ever there is a cure fortype 1 diabetes, we are all going to suddenly find ourselves with so much free time that we’re going to take over the world.

(Not so) Little Victories:

  1. I’m still here. When I was diagnosed with type 1 diabetes, the median age for people with type 1 diabetes was late 30s. It’s now in the 60s. Seeing as I’m now in my late 30s, I’m really grateful for that.
  2. Not only am I still here, but I feel pretty damn good. (Knocking wood.)
  3. I’m educating others. I work part time in the local JDRF (Juvenile Diabetes Research Foundation) chapter and create brochures, flyers, postcards, etc. promoting outreach and fundraising events and I run a support group for adults living with type 1 diabetes. I may be living with this disease, but I’m not alone. The least I can do is help.
  4. Waking up in the morning. If you’ve ever had an overnight low (and chances are that if you have type 1, you have) then you understand what I mean. Waking up in the morning after a difficult night can make a person very thankful.
  5. I’m more aware of what’s going on in my body than the average Joe. And chances are that if you use medical jargon around me I’ll understand. I make decisions everyday that are better for my body in the hopes that it will make a difference.

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Learned the Hard Way. What’s a lesson you learned the hard way? Write about it for 15 today.

In medical schools, doctors are taught a saying, “When you hear hoofbeats, think horses – not zebras.” In theory it is good practice. Don’t look for exotic causes to symptoms, rather look at the obvious – it’s likely that. However, it sometimes causes perfectly good physicians to refuse to think outside of the box, and therefore miss medical issues at first glance.

When you have a chronic illness like type 1 diabetes that effects every cell in your body, it is so easy for doctors to blame everything on that evil and obvious disease. Your head hurts? You’re probably having too many hypoglycemic incidences. You’re tired all the time, it’s due to your diabetes, fever of unknown origin? Yup, diabetes again. I leaned the hard way that it was up to me and me alone to fight to get my voice heard and force doctors to look around the diabetes elephant sitting in the room.

The first time this happened, I was 13, about to enter high school and came down with a debilitating fever that landed me in bed for over a week. My doctor questioned me extensively. “Are you doing your blood sugars? Following your diet? Getting exercise? What was your last A1C?” I was so offended and actually used my voice for the first time.

“Have you considered the fact that it might NOT be due to my diabetes?!?!” I yelled.

The doctor looked annoyed, my mother looked horrified. But my father (a physician as well) spoke up too, “Have you tested her for Valley Fever or Rocky Mountain Spotted Fever?”

A discussion ensued about travel and symptoms, tests were run, answers were found and I learned that I had yet another job to do when it came to my diabetes. My new job was to make people look past it when needed.

This became a pivotal role of mine on several other occasions. Another fever in my 20s combined with a case of erythema nodosum and I had to redirect doctors to do a chest x-ray and discover it was truly Valley Fever this time. In my 30s, pain in my fingers, swollen knuckles and painful joints in my feet and I had to redirect doctors away from neuropathy and to Rheumatoid Arthritis. It seems, like the non-guilty disease, a never-ending battle – one that you have to fight as no one else can do it for you.

One thing I didn’t realize until later in life was that it wasn’t just the case with me and it wasn’t just due to having a disease like type 1 diabetes. I have to be the fierce medical advocate for my daughter too. I didn’t expect that at all. My daughter is healthy (knocking frantically on wood here). She doesn’t have any chronic diseases (STILL knocking). So why would I need to fight?

The first time I had to was when she was about three and came down with a fever (are you noticing a trend yet) and was obviously sick. I was sure she had Strep. Her pediatrician did a rapid strep test which came up negative. We went home with instructions for bed rest and fluids and ended up in the ER that night because she looked like she had been boiled. Her skin was bright pink the fever was worse. Scarletina was the diagnosis and she did indeed have Strep. I leaned that day that she might not always test positive for strep using the rapid test and I needed to demand the conventional culture every time. I’ve had to do this three times already.

The most frightening however, occurred  just over a year ago. My daughter jumped in a puddle and fell, banging her head on tarmac. She cried (understandably) but it didn’t seem like a big deal. Until she started throwing up. Knowing that was a sign of concussion, my husband and I took her to a local clinic for a work up. They advised against an “unnecessary MRI” and sent us home with the advice to bring her to the ER if she throws up again. Later that night she did. We immediately went to a local ER where she was given an MRI and we were told that she had a skull fracture with bleeding into the brain. Words cannot convey the emotions that went with that pronouncement and I won’t attempt to illustrate the drama here, but I did something that surprised my husband and the doctor.

“I want to see the MRI results.” I said.

The doctor (GOD BLESS HIM) took me back to a room where he showed me the scans and pointed out the bleed. I could see it clearly. It was horrifying. However, it was now the evil I knew.

We were transported via ambulance to a medical facility that had a pediatric neurologist on staff. Upon arrival we waited forever. My daughter slept nearly the entire time and finally at around four in the morning the neurologist took a look at her scans. Surrounded by some obvious residents, the disheveled and seemingly sleep-deprived neurologist told his charges that he didn’t know why the patient was transported – he didn’t see any bleed.

You know what I saw? RED.

“I SAW IT,” I stated through gritted teeth, “and I’m not a doctor.”

The entire group turned around and blinked at me. I had to try again.

“It’s there. There’s one scan that shows it clearly. PLEASE look at EVERY SINGLE IMAGE before you say there’s no bleed.”

They went off – I’m sure to get away from the crazy lady – and we were in for another interminable wait. However at the end of this one we got a room and a week’s stay in intensive care. After further review and consultation with the head of neurology, they finally found the bleed.

I shudder to think of what would have happened if I hadn’t asked to see the scan and didn’t know there was a battle to fight.

Regardless of your condition, find your voice. No one else is going to fight these battles for you and they’re worth fighting. You’re worth it. I found it out the hard way, hopefully you won’t have to.

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