Friday, August 19, 2011

Back-To-School, Spoonie Style!

So, this week marked the start of school in my neck of the woods. I was certain that my son's school opened on August 22, so I had to make haste (thanks, "fibro fog".)

Taking care of a child is stressful, taking care of a child primarily by yourself AND dealing with a chronic illness, unemployment, and a ton of other medical and financial issues make things ten times worse (but I take it all in stride.*smile*)  I don't like the term "single parent", even though I am single and I am a I'll say "primary parent".

As the primary parent, 98% of the daily task land on my shoulders: I needed a plan to calm all the madness that is elementary school!

This was the first year since I fell ill that I really had to brace myself for what lay ahead; second grade is a huge deal, according to my son (I lovingly call him "J" on the internet.) Among the hundreds of thing I had to prepare, I had to find "the right book bag", you know...something cool that didn't look like a first-graders book bag or heaven forbid, a kindergartners! 

Mama had some work to do!

Sunday, I set my plan in motion: I need to make sure this ship moves smoothly!

The first thing I had to do: get all of J's outfit's together for the week (M-F)

Secondly, present a timeline for the week:
7 am: wake-up, get ready for school.
7:30: make it to the bus stop/ alternate plan in place if we miss the bus...thank goodness the school isn't far away!!!
(After the bus stop, this is my "off duty time", trying to catch up on rest due to the lack of sleep the night before. Depending on how I feel, I punch back in early and take care of housework/errands.)

3:00 pm: BACK ON MOM DUTY!
3-5: J is running around playing, getting fresh air and squeezing out that last burst of energy.
5-7: Dinner and homework
8:00: "family time": reading, TV, or playing with our respective "toys"
9:00 pm: bath-time
9:30 BED FOR J!

*Don't worry, I have a chart to help me daily!*

(Me: battling insomnia or painsomnia  from 12:00 am- 7:00 am) 


*Insert a yawn wherever you feel it's acceptable*
This is the first week of my plan - so far so good! We have a nice rhythm going on and despite my pain, we are making it work!

I hope this can help new spoonie moms or mom's (parents) in general; if you have any tips or tricks to make life easier, please share! I'd love to hear how you run your ship!

Off to hunt for those Zzzzzz's everyone seems to catch.


Tuesday, August 16, 2011

This is why I'm here...

The last few weeks, I have questioned my purpose for advocating for RA (other autoimmune diseases.)

I was really confused and somewhat frustrated with trying to educate myself so I can pass along the information to others:
Am I being redundant? Is this information relevant to other RA patients or anyone? Does anyone really care what I post?!

I was ready to throw in the towel, *delete* *delete* delete*

Then something happened, logging on to Twitter this week I noticed a fellow spoonie having a difficult time. I know we all have struggles dealing with life in general, throwing chronic illness into the mix and you have an emotional, psychical, financial, spiritual tsunami!

I could go into my personal woes but this isn't about me, this is about 'us'...the community of people somewhat slighted by the rest of the world in one way or another. In this isolated community, we tend to lean on each other for support. Most of us have never met face to face and don't know each other beyond screen names/ Facebook profiles but thankfully there is a little saying, "We can't choose our family, but we can choose our friends."

So here we are, an elite group of people, trying to lift one another up! It is important to pass along information to people just learning about their conditions, but it's vital to be around for emotional support.

A quote by Mother Teresa sums it up: "We cannot do great things on this Earth, only small things with great love."

Stay strong, friends!

Thursday, August 11, 2011

Rheumy, 2.0

Well, last Thursday I finally made it to the Lupus Clinic at Duke University Hospital in North Carolina. If you are just joining me on this journey, allow me to fill you in:

Since January of this year, I've had to fight for the referrals I received; my primary doctor and local rheumy weren't to thrilled about my request to see others. (I'm sorry, are you my boyfriend?! Share and share alike!) I will say again the doctors were very nice, but I felt their resources were limited. I can't afford to live with limits.

I was told the Lupus Clinic was hard to get into but I was willing to wait because I heard so many good things about the Rheumatologist department/staff and the overall quality of service. I've been trying to get an appointment for about 3 or 4 months, so I was thrilled when I got that phone call. Thanks to some help from my loving cousin (who happens to be a lupus warrior,) I made my way to NC!
Taking what I have learned so far, I really did my best to be "the model patient" - I took all of my meds (as an example of the lab rat phase,) along with my health journal including my local doctors names and numbers. I tried to have my complete medical history with me also, but my paperwork was held hostage at the eleventh hour...another story for another day. *Breathe. Just breathe*

This was obviously my first trip to Duke for myself; around here, you only visit Duke when the situation is 'serious'. I'd tell people I was going and I can still see the look of fear and concern on their faces...instead of going through 'Autoimmune Disease: 101', again, I told the masses I was having some test done relating to my RA.
Unlike my other appointments, I asked my best friend to come with me - this allowed me to take my mind off of the visit and avoided me the embarrassment of getting lost by myself (it's easier when you have a "fall guy", lol!)

Discussing my symptoms and issues with the rheumy, I again realize how rough it has been for me over the last year; at one point, I just stopped and asked the doctor, 'Does all of this make sense?!' Instead of being sad about it, I just had to quietly say "Thank You, Lord" for keeping me sane and centered all this time.

The visit to Duke was also unique to me because I had two doctors perform a psychical- checking pressure points and asking me obvious questions: 'Does this hurt?' (Yes, it does...) It was nice to be talked to and treated like a real person instead of an odd case.
After I left a few samples, I was ready to roll. I go back in October to discuss my lab results even though the doctor and I have a good idea what's going on...beyond the Lyme Disease, RA, and Fibro (sorry Dr. House, sometimes it is Lupus.)

As we left the hospital, my bestie asked me was I glad I went to Duke. I told her, yes: spending so much time in doctors offices and being thoroughly observed isn't what I though I'd be doing in the "prime of my life", but this is my life now, and I have to preserve it as long as I can.

So all-in-all, last weeks trip was positive. I had to fight like heck to get to this point, but fighting isn't in vain.

You gotta fight, for your right. To get referrals!