Friday, November 14, 2014

Conference-ho!

This weekend, I'm headed off to Boston to attend the American College of Rheumaology conference.  This wil lbe my second trip to attend the conference; which is six days of doctors and researchers discussing the last year's worth of developments in the world of rheumatology.  There are a lot of pharma companies also represented; who come to discuss their medications and treatments with the physicians. 

There is one largely missing component to the conference; patients.  There are not many of us who attend.  Less than a couple dozen.  Coming from the world of education, where our largest conferences and conventions are heavily attended by parents...it's odd to attend something where we talk about an entire group of people without them being present and represented among the body.

I was fortunate enough to go last year with the CreakyJoints organization as their patient correspondant.  (If you haven't checked out CreakkyJoints.org yet, please do).

This year, in my capacity as blogger interested in parenting and pregnancy with a rheumatic disease, I will be going and attending every session I can that aims to discuss pregnancy and lactation with rheumatic diseases. 

In my capacity as a Patient Governor for the Arthritis Power study headed by CreakyJoints, I will also be attending meetings and meeting researchers that have to do with patient reported outcomes and rheumatoid arthritis.  

I have lots of hats to wear while I'm there.  I'll also be mommy, because my husband and daughter are coming along for the ride.  

I'm hoping to learn a lot and I'm hoping to give more voice for patients; showing doctors that patients can respectfully contribute to the discussion at this annual conference.

See you on the other side, and be sure to check out my twitter feed (@SpoonlessMomma), as I will be tweeting the entire weekend under the hashtag #ACR14.

-SM


Monday, October 20, 2014

Spoonie Family Planning

Be forewarned, this post might end up being multiple posts.

Recently, I was able to wean off of my last medication that inhibits folic acid/folate processing.  Which really means that the last major obstacle in the way of trying for baby #2 is gone.

In the three years since the birth of the kiddo, I've gone back and forth on the family planning train so many times...it's ridiculous. 

My initial plan for having kids was always to wait a few years (say, 4) between kids.  The reasons being 1) I REALLY enjoy the baby phase, so I'd like to enjoy it and spread it out over as many years as possible and 2) Being so sick during my first pregnancy (I had severe hyperemesis gravidarum), I wanted to be able to be pregnant when I didn't have to worry about caring for another baby...having a kid in school for a few hours a day is a big help when you need rest & spend your entire day sick.

And then my arthritis got really crappy and doctors were saying I needed to reconsider that timeline- 1) they were reluctant to put me on some aggressive arthritis therapies if I was only going to be on them for a relatively short time before I wanted to have another child 2)My PCP at the time scared the crap out of me saying that I really needed to get pregnant before the magic age of 30, when my risk of pregnancy-induced heart failure increased...especially with aggressive arthritis which can have some not so great cardiovascular comorbidities.

So, we tried to get pregnant.  And I miscarried, twice.  Turns out my Hashimoto's disease was really impacting my TSH levels.  My thyroid disease was not controlled, I had a goiter, and thyroid disease can be a real drag on fertility. 

And then my daily headaches got really cranky again. So, I had another IUD inserted.

So, here we are.  I am off all of the bad stuff when it comes to birth defects and pregnancy. My thyroid is controlled.  My husband's company introduced some really awesome daddy leave.  Is it time to take the leap?  I'm afraid to say yes. I'm afraid to not go for it NOW, when everything seems to be perfect.  But, I just started some really great professional things in my life and as a family we're starting to travel again... Am I ready to stop all of that or slow down to have a baby?

No person or family has an easy time deciding when to have another baby... Being a spoonie makes it that much more complicated.

What do you all have to say? I'd love to hear from other spoonie moms.

-SM

Wednesday, October 15, 2014

Wheelchair = invisible and single?

I had an eventful week. My husband and I visited family in Southern California and spent a few days in Disneyland. 

I also walked/ran the 5k event in the Long Beach Marathon with the Cure Arthritis team.

 It was an amazing event, and I will write about it at length later. 

Now is time for venting. 

Because I did the 5k, and because my dysautonomia & orthostatic hypotension have been misbehaving, I made the decision to use my power wheelchair while in Disneyland. The cast members and crowd were nothing short of awesome. It was nice to be in a crowded public place and not have to fight to get around and be truly  accommodated. 

And then...

At the end of our second day, my husband and I pulled into an area for us to be able to watch the fireworks. Being in a wheelchair for such and event means that finding a place where you can see is....difficult. 

My husband left me in our prime spot to grab some water so I could take my medication. Some "man" (loosely using the term) decided to step directly in front of me, blocking me view. He saw me. He just didn't care or understand how he was blocking my view. And, certainly not caring that I had to scope out my spot for a long time to get a place where I could see from my wheelchair. 

"Excuse me," I said.

And then I got yelled at, berated, and told to "chill the fuck out!" 

"Calm down!" He said to me. 

Never mind that he was the one making a scene and yelling.

If you know me, you know I am no shrinking violet. 

"I'm not the one swearing and yelling, you calm down! You are blocking my view and I'm in a wheelchair."

He decided he didn't want to be near me and proceeded to yell at his group "Get me away from this crazy bitch."

At that point, strangers in the crowd came to my defense and told him he needed to leave. 

He decided to add one more insult: "Get a husband!"

Having to have he last word, "I HAVE A HUSBAND THANK YOU VERY MUCH!"

Apparently being in a wheelchair makes you invisible, irrational, and permanently single all at the same time. 

My words I didn't use around the happy children in Disneyland: "You need to get a brain asshole!"

Tuesday, October 7, 2014

No one to blame but myself, or The importance of self-care

Yesterday morning, I took the kiddo to an early dentist appointment.  Since we have a lot going on right now, I decided on the "divide and conquer" method with my husband.  I left him home to do some chores while I took the little one to her appointment.

The night before, I didn't get to bed at a reasonable hour.

I didn't eat breakfast before we left for the appointment.

I forgot to take my water bottle with me, and rather than stop to get one, I decided to just power through.

When I got home, I didn't eat anything.

I didn't take a nap, even though I was super tired.

It was 5:30PM before I had anything substantial to eat.

No wonder that by 6:00 PM I had a full, complete migraine.

I am still migraine cycling today. And I have no one to blame but myself.

Moms and spoonies, remember to take care of your self. Learn from my stupid mistake.

-SM

Monday, September 15, 2014

Advocating with a Migraine

We all have those days when we try to tell a story and we realize after ending a conversation that we totally missed a detail that was important...

Yup.

Try giving an interview and speaking to important issues when you are in the recovery phase of migraine.

And the topic is really important.

Like speciality drug tiers and health insurance.

Ugh.


Wednesday, September 10, 2014

Some Awesome Advocacy Work


Earlier this week, I spent two days in our Nation’s capital working with some really amazing people and the American College of Rheumatology.  The “Advocates for Arthritis” conference brings together physicians, nurses, and patients for two days annually.  The goal of the conference is to address legislative issues that impact patient care.  The second day, teams that hopefully include both healthcare professionals and patients meet with various legislators and/or their staff to help bring those issues to light.  Obviously, having patients discussing how these legislative issues impact their real lives is important.  I am immensely proud to be among the citizens exercising their Constitutional right to inform the government on how they can help the lives of patients.

I hope that every citizen voices their concerns to their Representatives in our government.  Remember that your legislators work for YOU.

That being said, in the coming weeks, I will write posts about varying issues we discussed on the Hill, and calling you to action.  If any of these issues are important you, or impact your life, I want you to get involved.  Your government needs to hear from you, and with the help of great people like you, we can BE THE CHANGE.

Thanks, 
SM

Tuesday, August 26, 2014

More Dialogue

"I wanted to make it to the store today, but the pain caught up with me. Ugh, I hate my body."

"I miss running, but I can't do it anymore.  I hate my body."

"The fatigue is kicking my butt today. I hate my body."

"I miss doing the things I used to do. I hate my body."

These are all things I've said, and I've heard plenty of other people say about themselves.  When I talk to other moms without health impairments I hear things like....

"My rear end is so full of cellulite. I hate my body."

"I hate my stomach after having kids, it's so soft and saggy."

"I hate my breasts after breastfeeding."

And so on, and so on and so on.

I decided that I wasn't going to allow my daughter to grow up with a mom who talked this way about herself.  I wasn't going to talk that way about myself because it's beyond negative, and not productive.

Rather, I will appreciate my body for what it is, for what it has done, and for the strength that it does have.

It's an important change to make for lots of reasons, but first and foremost, I need to appreciate what I can do. And that I am more than my disease, and any person is more than a body.  

I do yoga almost daily and I notice that I have strength, flexibility, and balance as much as any other person in class, and sometimes more. I love my body.

I have adapted and found different physical and non-physical tasks that make me happy despite my disease.  I love my body.

In the face of fatigue, I persevere on.  I love my body.

I carried a baby to 38 weeks term and delivered a healthy, beautiful baby girl. I love my body.

I provided my baby's entire nutritional needs for six months and continued to feed and nourish her from my own body for nearly two years.  I love my body.

Even as much as I love my body, I CAN say that I hate arthritis, Hashimoto's, fibromyalgia, migraines, and every other awful diagnosis I have.  But, I a grateful for the lessons they have taught me.