Tuesday, December 22, 2015

12/22/15- The R.A

This post is going to be a difficult one for me:  1) I could rattle on and on about R.A. and other autoimmune diseases, so apologies if it's such a long post; 2) people, including myself, forget just how devastating these diseases can be, I mean it's in the same category as cancer and HIV (luckily I don't have severe R.A., just moderate, and the medicine I'm on and the rest I plan to get help, but as one patient put it, wipe out days make you absolutely unproductive); and 3) the first year took such a big chuck of me, it eat my soul, and even though I am bigger wimp than some of the other patients (there are other patients who are so much more inspiring, like they never complain and still go kick butt even on wipe out days), I no longer let the disease be who I am.  I have my soul back.

Oh, and if you are a patient like me, who complains about it and just lays around the house some days, I want you to know, that is okay.  We don't have to all be the Taking Care of Business patients. If you are the TCB patient, keep it up dude, you rock!  (How pleasing am I trying to be right now, ha!). :)  So here it goes, here's part of my R.A. story (because seriously I have so much more to say about it, but this is blog post, not  a novel).

In 2007, I was diagnosed with Rheumatoid Arthritis.  It took a whole year to figure out why I felt so fatigued, achy and over all malaise. It was one of the sharky-est years of my life-- in and out of doctor's offices, so many tests (blood, X-rays, CAT scan, MRI), and the vicious cycle that feeling ill with no answers as to why leads you into a depression, which then makes you feel ill and you repeat depression/ill all over again.

I felt that I was losing my mind; that I was a hypochondriac. I will tell you that most of the doctors I meet through this experience did not reassure me in feelings of insecurity and vulnerability, and they made me feel even more like a hypochondriac (like aren't doctors supposed to care about you and not belittle you?).  One even suggested it was just irritable bowel syndrome, and that I just needed to chill out.

I actually had mono as well that year (in addition to the R.A.), which for me meant stomach flu type symptoms.  I'm glad I keep listening to my body and keep pushing for answers (because mono and irritable bowel syndrome are totally the same thing, not).  I'm an Aries, so I can be stubborn, if you believe in that astrology stuff, and for once my stubbornness/refusal to take that I was just crazy/stressed/making it up resulted in answers.  I can only image the patients that go undiagnosed/under diagnosed because their too timid or the doctor won't listen.

So anyway, I got lucky that I randomly ended up at a GP (there was a self prescribed MRI involved and the MRI place asking for my doctor's name, which I didn't have since I was the one recommending the MRI, and the place just assigned this GP to me) who finally tested me for a variety of things, including mono and R.A.  The mono test came back positive, as did a high R.A. factor and high CRP count.  He sent me to a Rheumatologist, who then put on Plaquenil, and eventually my CRP number went low again (and the mono inactive).

In 2014, I became pregnant, and it also helped me go into a remission.  It was the healthiest I felt.  No sinus infections during that time (I always get 2-3 each year), no achy joints, no fatigue. Sure, sometimes I was tired from caring a baby around and had bad morning sickness the first trimester, but by the second and third, I actually felt energetic during the days. I started taking walks at 7 in the morning with dog, which back in 2007, I was lucky if I got out of bed by 9 am.  I was in the office more and every weekend helping my husband with baby prepping activities.  It was great.  I was no longer having wipe out days, yay!

Then early this year, 2015, the achiness started again.  I had my six month check up with the Rheumatologist in late January, and no surprise to me, my CRP number had gone high again.  I had to start taking Plaquenil again (I quit it during pregnancy).

Yay Pills!  All the meds and supplements I take to stay healthy

And this year has not been kind to my body:  a severe sinus infection that took 3 weeks and antibotics to get over, followed by a loss of smell (such a blessing and a curse! Couldn't smell dirty diapers, but knock on wood that there wasn't a fire/smoke in the home that I couldn't smell), hand/foot/mouth disease, followed by temporary myelopathy (lost some feeling in my legs), dry mouth/cracked lips, dry eyes, another sinus cold, adrenal problems, and fatigue throughout the year (boo wipe out days were back).  The R.A. has flared again and this time also with a possible secondary autoimmune disease, Sjoren's (possible explanation of my dry lips and dry eyes).

Two things that are delaying my next remission.  The first is a lack of a good night's sleep (a one year old waking up in the middle of the night is not good for the immune system, FYI, in case you didn't know).  The second is stress.  Lack of sleep and stress are some of the things autoimmune patients are supposed to avoid, ha.

So I've come up with a plan to reduce my stress and get more rest: reduce how many hours a week I work (and to also work on this blog, as they say to reduce stress, do something you want to do, not that you have to do).  I plan to go down to 24 hours/week at my work for the New Year.  I just need to get approval.  I will let you know how that goes.  I'll also share with you my road to remission (road to remission, possible band and/or album name). My primary care doctor has given me some new meds to try, so hopefully that will help in addition to the more rest/less stress/less work plan.

I do hope to one day tell you that all my blood work looks great and that I'm feeling great physically (mentally, I'm feeling quite well, don't want you to worry, my soul is still intact :-)).  In the mean time, you all take care of yourselves.  Take care!  (I'm so bad at ending these blogs, will work on that).

Oh, I realized I didn't give too much explanation about what R.A. or Sjoren's is; just how sharky I feel because of these diseases.  For more information about the diseases, peruse the following links:



And Bev really explains the fatigue thing well (it's my number one problem with the disease, and I know other autoimmune patients who feel this way too; thanks immune systems for thinking our bodies are a foreign objects!):


Monday, December 14, 2015

12/7/15- The Work Holiday Party

Work holiday parties can be so much fun!  In fact, one of my all time favorite holiday party was a work one.  We dressed to the nines, I wore this fabulous red gown, and it was at the Arizona Buttes. There was good food (steak if I remember correctly) and drinks, professional photos, dancing and fake gambling because the theme of the holiday party was Vegas.  At the end of the night you could use your fake winnings to get raffle tickets and win actual prizes!  It was a lot of fun, and you felt valued as an employee because they cared enough to throw this fancy shin dig for you.

My current place of business, specifically my department as it's up to the individual departments to throw the parties, cannot afford such a nice party, and that is okay.  Because what we lack in budget, we make up for in spirit and creativity.  We have fun games (make up a holiday song, have a whole team act out a holiday song, holiday bake off, etc!), decent food, cool decorations, tons of ugly sweaters and merriment.  And the person who organizes it every year, her excitement about the party is just so contagious, it's hard not to be excited yourself and to want to help out.  I've helped out for the past 3 years and have had a blast.

Aunt Bethany's Jello Mold for This Year's Work Holiday Part
(Let's see who gets it at work)

But this year, I just wanted to go as a participant, not a volunteer.  It's been a tough health wise this year, so I wanted to sit back and enjoy this year's holiday party.  Not stress about one more thing I'm responsible for-  about whether or not I'd remember to pick up the decorations.  Plus, call me a McScrooge, but I didn't want to spend my own money on decorations (if you can't tell, I got tasked with the decorations this year, which isn't the biggest part of the party, but still a task).  I supposed I can get reimbursed, but the $10-$15 I spent at the dollar store isn't worth all the electronic paper work.

We also don't get paid to plan the party, we have to do it on our own time.  So on top of needing extra sleep (thanks R.A.), work, and enjoying my family, I have to squeeze in helping out this year's party.  No thank you.  Not this year, I said to myself last week.  BUT I did it anyway because I'm a sucker.  D'oh!  Hopefully next year, there will be some new people that can be roped into  help with the planning, and I can finally enjoy one of these things without the worry and the criticism.  Oh yeah, did I mention it's mostly engineers at this party?  Some engineers can be seriously unimpressed by all the hard work you did to bring them a festive fete (I think some are born without a funny bone, true story).

The only good thing about the upcoming work party is that there will be free food!  What? I'm an engineer after all; we love free food (it's really how projects get done).  Anyway, I hope you truly enjoy any upcoming holiday parties, and I can't wait for my holiday vacation!  Enjoy the season!

Wednesday, December 9, 2015

12/5/15- Jack

The two favorite parts of my work day involve my son Jack.  Of course it does, because how could you not feel happy when looking at this guy?  He's so beautiful and happy and everything good in the world!  (Way to humble brag.  Not!  That was full on bragging, and I'm not ashamed of it.)

My 1st favorite part of my work day is at the end of it when I pick Jack up from daycare (probably most people's favorite part is when the work day is done :-)).  I go into his classroom, and he spots me and gives this big smile and walks/runs towards me.  He wants to be immediately picked up and hugged when he reaches me, and I always scoop him up.  It's the best feeling ever.  

Unless Daddy (his daddy, my husband in case you needed clarification) is also with me for pick up. Then he blows past me and runs into Daddy's arms. Son of a shark!  Yeah, that stings a little.  But right now he only wants to give me kisses, not Daddy, so that takes the sting off a little (sorry Daddy! I'm sure he'll give you kisses soon enough). 

My 2nd favorite part of my work day, also on weekend days, is telling him a story.  Now sometimes he'll sit all cuddly in my lap, other times he'll be playing with some toy, ignoring me. I just love reading him someone else's stories, or making up my own.

It dawned on me that these stories I've made up, I probably, kinda should write them down.  Because one day, I'll forget how they go.  I do after all have mommy brain (you mommy's out there know what I'm talking about :-))! I want to leave these stories with him, with us, forever- that we always remember the happy, beautiful, good feels that come with the end of the work day. 

Friday, December 4, 2015

12/4/15- The Intro

It's my one year anniversary.  But not the kind you automatically think of when you hear anniversary (wedding, job, maybe even a passing).  It's been one year since I returned to work from maternity leave.  It's been a year filled with such mixed emotions-- I'm missing my son's 1st year of development (sadness and anger); woo, I've shown myself and the world that I can do this working parent thing (happiness);  I've gotten back some self identity (relief); and I'm setting an example for my son (pride).  One minute I'm happy I went back work, and the next I'm regretting it.  But I did it. I don't have anything to prove to myself anymore.  Except that I can do more. That I want to do more.  

That's why I'm writing this blog.  I yearn for more than just what my current work offers; I yearn for a challenge in the work I produce.  My family and friends, my personal life, make me so happy, but work is just so-so.  I think it is because once you create something so beautiful (for me that is my son) you can't go back to the mundane, and my work is mundane.  I like calling myself an engineer, but I've been on the same project for 8 years now and doing the same tasks for the past 2-3 years (our project is in maintenance mode).  My boss has tried to give me challenges, but it's really just a derivative of something I'm currently doing or something I've done in the past.  I need more.

It also doesn't help that my Rheumatoid Arthritis and immune system have decided to go crazy on me.  I was in remission during pregnancy (seriously medical researches, bottle that and serve it up as a cure), but about 3-4 months after giving birth, my CRP levels jumped high again, and it's been a struggle since (more to come in following posts about my health, in case you're super dying to hear about how NOT fun autoimmune diseases are).  I'm blessed to have a boss who understands and a company that lets me work remotely on the sharky* days.  I won't deny that.  It's just if I'm going to be feeling Jaws, then I at least want to be working on something that intrigues me.  Something that, even though I want to lay in bed all day, makes me go, I don't care how mako I feel, I'm getting up and doing it!  

So yep, that's the back story for this blog.  It's about complaining about work and R.A.  Haha, no (although I will probably whine, you'll just have to deal with that and offer me some cheese or find another blog, (but please don't leave!)).   It's about creating something and finding work products fun again (while still doing my day job). For me to share my life as an engineer/mom/wife/RA patient/aspiring writer/cookie lover/other stuff  with you (seriously that Meredith Brooks song, I kind of get it now).

Because I know I'm not alone in being an engineer/mom/wife/RA patient/aspiring writer/cookie lover/other stuff.  In fact, I bet if you are a parent reading this, you remember your return to work after maternity/paternity leave and all the different emotions that came with that day.  It's a day most parents remember for the rest of their lives.  Such an awful and wonderful day, at least for me.  Tell me how it was for you in the comments.

Now how to end this post.  Sincerely, Jack's mom?  xoxo, Suzie?  The end?  You get the idea.  Tata for now!  Roger and out! Ok, I'm stopping, I swear.  (after a while crocodile)  

*My friends and I were talking about how we probably shouldn't curse around my 1 year old.  It's so hard not to curse around children; it's like forbidden fruit, making you want to do it even more.  So my friend purposed a code word.  Then someone in the group (I honestly don't remember) purposed shark as the substitute/code word.  Shark, hammer head, great white, jaws, anything shark related, really works well a substitute curse word.  Try it.  It's fun.  You'll see.