Wednesday, December 31, 2014

A Year in Review

As east coast USA is winding down 2014, I wanted to write a bit and provide a capstone to my year. It's been almost an entire year of blogging too!

I am incredibly grateful for the changes and developments in the last year.  When I started this blog, I was feeling more out of control in my life than ever.  Things looked good to those on the outside, but I was feeling a bit overwhelmed with my disease...

I feel like in the past year, I have gone from being preoccupied with managing my disease state to being able to manage my life and determine its trajectory. I'm in control more...instead of my health being the determiner.

I'm getting out of the house more, I'm going to medical appointments less, I'm involved in the spoonie community more.

I decided that instead of NOT doing the things that made me happy because they were difficult to do, I was going to do them anyway...and modify as necessary.

I loved gardening as a child (I had my first perennial bed by age 6), but I had given it up in recent years because I was afraid of the physical demands that come with managing an intricate landscape.  Well, I planned and planted a new vegetable garden in my yard, started a new perennial bed, and redid a lot of the landscaping at my house.

My family hadn't been on many vacations since our daughter was born.  This year, we traveled somewhere at least every two months.

I gave up quilting because it was too difficult to do with my arthritic hands...well, I bought a sewing machine and dove into a whole world of sewing that I could never imagine.

I started working more with the folks at CreakyJoints; working with them on their study for patient-led research initiative.

I traveled to Washington DC to advocate for policies that increase access to care for patients living with rheumatic disease.

I went to the American College of Rheumatology conference for the second time in order to bring more information back for mothers, and those who desire to be mothers, with arthritis.

I started blogging.

It's not that my health has improved (in fact, in a lot of ways it's worsened), but I have taken steps to make my life more fulfilling and meaningful for me.

I don't believe in New Year resolutions, but I am promising myself that I will continue to invest in myself and not let my disease dictate what I can and can't do.

Happy New Year Friends,
-SM

Thursday, December 18, 2014

Coming to terms

Very often, I fancy myself Super Woman. I take on WAY more than I should. I volunteer to do things I know will cost me greatly. I do these things because I believe in the cause, or because I love doing them. Sometimes, this means shifting priorities or asking for help and support from my loved ones; and it does mean I say "no" to an awful lot.

Sometimes though, I have to come to terms with the limitations of my body; and it hurts my ego.

In the past few weeks, I haven't been feeling well. I've shared a bit of that with you. I'm flaring. My fatigue and pain levels are super high. All of this coinciding with the holiday season has pretty much meant that commitments outside of my family haven't been attended to. It is what it is.

But the reason that I am writing now is because I just had to admit that I can't do everything, and that I am not Super Woman, and I had to admit to a part of my identity I often ignore.

My daughter's school holiday party is in the morning. I planned to be a classroom volunteer for the party. Being a former teacher, I recognize the importance of quality parent volunteers--plus I have the idea in my head that "this is what stay-at-home moms do."

Well, as I write this I am packed in heat and ice, filled up on medication, hoping that I will eventually become exhausted enough that the pain won't wake me from my sleep. 

Guess who won't be volunteering for the class party?

Admitting that I won't be able to volunteer is admitting that I'm not a "stay-at-home mom," but rather I am disabled. The reason I am home is not to be a stay-at-home mom (although getting to be present for my kid is a big bonus). I am at home because I am disabled. I can't work. I can't be depended upon to show up at specific times because sometimes my body has other plans. 

So, while my little ego is bruised because I can't pretend to be Super Woman right now, I'll have to be content in that I am sending food, craft supplies, and party supplies. My kid will get to school on time with nutritous food in her belly and her holiday shirt on. And for now, that just has to be enough.  

-SM

Saturday, December 13, 2014

Update

I know I have been MIA dears.

I have been ill and run down since my return from Boston.


It's all the normal stuff for us spoonies...but I am using what few spoons I have to parent. I really do hope to be back in the swing of things soon.

I hope you are all well and enjoying the Holidays with your family.

-SM

Wednesday, December 3, 2014

Better late than....

I know. This is super late. I promised to write blog posts about things I learned at ACR (the American College of Rheumatology conference). And, two weeks passed.  I'm sorry.  I would make excuses, but the truth is, my fellow spoonies don't need explanations.  They "get it."

My life is a bit crazy, and I'm flaring. I'm cranky. I'm overly sensitive & emotional. Oh well, sh*t happens.

I'll work on the first post tonight and tomorrow and hope to publish by Friday morning.

-SM

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!"