Taking care of me

The hours drag past and I should be asleep, but I see everything that has to be done before I leave in the morning...what a weird feeling: packing like I am traveling, but I will only be a few minutes from my apartment.  Don't have the option to run home and grab anything...I am stuck in the hospital bed for at least 5 days.  I will go in at 8 this morning for a bilateral Sacroiliac fusion with pelvic graft and titanium hardware fixing it all together.

The prayers and well wishes have been overwhelming and the offer of help, which one should always be thankful for, has made it harder for me to prepare me.  The irony is that I truly enjoy doing for other people and helping however I can, but now I have offers for help...it really is easier to do it myself...not to mention, once all of the help has gone, I still live here and have to be able to find things (quite possibly with limited mobility).

I will be forever grateful for the people that He has sent to provide for my needs and the ability to humble myself and receive the blessings He has in store.

Only five and a half hours until it is my turn...

Tree trunks and water balloons...

The past two weeks have been overwhelming...Surgery is fast approaching

In the Rheumatologist's office, the informational TV is constantly scrolling and one of the pieces of wisdom..."Taking your medicine everyday is not a reminder of how sick you are, it is a reminder of the good you are doing for yourself" Although I still don't know if I agree with that statement, I do know first hand that TWO weeks without them, feels like 2 months.  The meds make you forget what the symptoms were that made you start on them in the first place. 
My hands and feet are more swollen than I have ever seen in my life (really ugly too) but the pain they experience to the touch will  be with me for a long time.  In exchange for all of these returning RA/AS symptoms, the pain patch has worked to alleviate the pain in the SI joints, but then again, I might just be distracted by all of the new pains and mobility issues...oh yeah, I am still off the meds until 4 weeks after surgery. 

The optimism seems to get lost in the management of the new and worsening symptoms, but nonetheless, I concentrate on the promise of each new day (and even more so now, the freedom from work)

Lucky

So happy that I made it through another week...and a week with good news, at least in the big picture.  I saw a surgeon this week and he was skeptical at first that someone so 'young' was willing to have such an extensive surgery.  And then I began the story, from the age of 19 whether he wanted it or not. Finally he was accepting of my need for the surgery and that it is my last hope of regaining my life as it was before the disease progressed.  Lots of X-rays and a 3-D CT scan and I revisit him this Friday.  Hopefully I will be able to plan the next few months of my life next Friday afternoon.

This is a blessing and challenge, but 'I can do all things' (Phil. 4:13) through faith in Him.  I am also beyond blessed to have friends that I consider family that are willing to help as I go through this.  Even one that knows me too well and says I should be making the list of what I will need so everyone can plan to be a part of the schedule.  Just a reminder of the blessings that are shower even in the midst of the daily challenges.

SNOW!!!!

We have gotten much more snow in Georgia in the last five years than I can remember in my whole childhood living in Georgia.  But then again the quantity of snow that came with in March of '93 is probably equal to all of the more recent snows. 

I am really hoping for snow tonight so I can avoid a Monday at work.  It will be so hard to get up if we don't get the predicted amount of 3-6 inches.  I will also promise myself to get a whole lot done, right after I sleep in tomorrow morning. Fingers crossed and milk bought. ( I only bought milk because I was actually out, I am not a crazy southerner that clears the shelf of milk and bread for a couple of snow flurries)

ASAP

ASAP or Ankylosing Spondylitis Awareness Project has the most fabulous Facebook page that makes me feel a little bit normal when I read what others are dealing with that mirror my issues completely. One of the recent questions posted asked what people with AS would write in a letter to those that don't have it.  It is so amazing how true I find many of these comments.  I copied some of the best below to help others understand (and remind me I am not crazy, at least not when it comes to the way AS affects me.)

-Enjoy being able to do whatever you want without thinking of the consequences
-Sometimes the pain is so bad, I'd rather die than face it another minute
-Sometimes it causes me to scream and cry or bring a grimace to my face
-Don't forget to thank God for the ability to eat without throwing up or walk without a shuffle or limp
-"Sucking it up" is not always an option-sometimes nothing helps
-Don't tell me how to feel, would you tell a cancer patient to "suck it up"?
-Please don't think I'm angry if I don't smile or if I'm short with you that you've done something wrong. Please don't think that I don't love you if I ask you to hug more gently or if you forget I grimace or tear up! Please don't think I'm rude if I don't shake your hand.
-I appreciate your help, but do not pity me and let me ask you for what I need
-My pain tolerance is higher than yours will EVER be
-I pay a price for EVERYTHING I do, just cause I'm "looking" fine today...
-Do not assume that because I'm in pain I should look sick or broken on the outside
-I am terrified at the fact that I will live under a doctors care for the rest of my YOUNG life
-I can't just live carefree
-I must have weekly injections (even daily pills) of all kinds of horrible medicines for the REST OF MY LIFE
-I struggle daily and I don't want pity, just for you to listen if I need you too.
-Don't ask me what I have and then when I start to tell you zone out--you asked so at least act as if you care
-Have YOU ever been in a car wreck or had the flu--how'd you feel? Well, that's how we ASer's feel EVERY SINGLE DAY multiplied by a million at times. Have you ever been sore all over? Thrown your back out? Called in sick? Well, we can't call in sick or we'd never go!
-I hurt NONSTOP. I may feel awful when I wake up, and better at night, Or may wake up and feel great and hurt later on. Or I may feel like CRAP ALL day long. Thats how this disease works, and there is no rhyme or reason.
-We hurt, but we are hopeful. Hopeful that one day we will be understood, and that we DID NOT CHOOSE THIS FUTURE!

-Just because I look young and healthy does not mean I feel young and healthy or that I am. I am not lazy...I am like a crappy pair of rechargable batteries; you use them for 10 - 20 minutes then they are dead and have to recharge for anothe...r hour or two. Or some times you can charge them all day and they only last one hour. Nothing left but a pair of crappy batteries that won't stay charged. 

-Normal people have a head ache, they take Tylenol, and it hopefully goes away. Someone with chronic pain takes an anti-inflammatory. That only dulls the pain a bit. Our pain never leaves us alone, and gets even worse when we rest too long.
-That all we want is to not have to think about how we move and how it might affect us, about how our pain affects the people around us, the people we love, and the people we haven't met yet. 
-How, when entering into a relationship, we have to think about broaching the subject of pain and how it may affect someone else and hope that other person won't run away.
-That we celebrate every day we can still get up, walk up the stairs, go to work, take care of our families, and smile.
-That we are no less and no more than anyone else, just different.

From the top...

Finally I am back at work.  I like living by myself, but I need the people I work with and my students more than I could have ever imagined.  A new semester has helped distract me from the pain.  I got to see my first basketball game of the season tonight and forgot how much joy I get watching middle schoolers play their hearts out.  The season started in November.  If not for middle school basketball, I never would have gotten to know the sweet man that I might actually marry some day (heading into year 3 of engagement, and completely content).  I am very sentimental when it comes to basketball. I am looking forward to the rest of the season and a few more wins.

I am thankful for everything I CAN do and that the pain is actually not as bad as it was in November.  I am thankful for physical therapy and the muscles that are stronger now.  I will continue to be hopeful and try to be as positive as I can, and when I can't, there are always the meds that knock me out.

Holidays.

Snow made this Christmas the best yet, make that second best.  The year I got engaged is the best Christmas.  I spent a lot of my time off coming to terms with my disease. I have to live with it, so I try to stay as positive as possible.  I still can't believe I didn't go to work for six weeks.  I gave myself that time to heal, hoping that it would be the same as all the flares of years past.  I was wrong.  Now I have to move on and know that I can do as much as I can do, but not nearly as much as I used to.  I do in fact have to live with it for the rest of my life and it has already changed me, physically and emotionally.