How did I get here?

I know I am exactly where I should be in my life, but I still end up some days wondering why me? Why do I get to live in almost constant pain? How did surgery become my only option at 28?

I will never know why, but each day I get out of bed and hope for the best.  I find comfort in the internet community I have discovered.  People that completely understand the disease and all the physical and emotional pains that come along with a chronic illness.

This particular blog, by an awesome AS advocate is a perfect description of the way each and every day feels:
http://hurtingbuthopeful.wordpress.com/2011/03/23/the-truth/

One day there will be a cure and if not, at least a better understanding of the disease and how to live a normal life with the disease.

Everyday is a new day

My mom has gone home for the weekend...this is the first time I have been alone since before my surgery.  I still have my limitations but I can do a lot more than I could three weeks ago when I came home from the hospital.  So happy to have been home and recovering as well as I have been.

Unfortunately, I have developed a sinus infection and have been suffering from the effects of blood loss during surgery.  Any type of infection is never good for AS and it can keep me from starting my meds in the next few days.  So thus begins even more meds...antibiotics for the infection and iron for the loss of red blood cells.  I hate feeling as sick and run down as I have been. 

I am also blessed beyond belief. Last Friday I got to see the sweetest baby and have dinner with two of the  greatest friends I could ask for.  Monday I got a visit from two of my favorite coworkers and they brought an extravagant dinner for mom and me...Wednesday I got a St. Patrick's day surprise from another wonderful friend (everything was green and yummy).  Thursday's dinner cam with visitors also.  The visits make all the difference to me.  The blessings continue as I have visitors all weekend.  Still a long road ahead, but it gets easier with the thoughtful, loving people in my life.

Bad Days

I am lucky to have had all of the success that I have in my recovery, but the past three days have been bad ones.  I awoke this morning to the ACC financial crimes detective calling and telling me all the info he needs to follow through on my police report...Several weeks before surgery, an unwholesome person decided that he needed some items online (including a vacation) and charged them to my credit card...Not a very low stress experience when you have a disease that is triggered by and worsens with stress.

So needless to say I spent the next three hours of my day dealing with awful customer service and legalities about what they can't release to me, but wait...you allowed this person to purchase your product or service with a name that did not match the credit card and you are going to protect his rights.  Gotta love it.  Fortunately one of the companies, Webroot did actually end up being helpful after I had to leave a message for the legal department...and who ends up helping me, the sales department supervisor and one of his agents.  I was previously told twice by two different sales agents that they could not give me any information even though it was my card charged.  It makes me want to scream, but I just take a pain pill instead.  That at least takes away the pain from surgery.

I also wish I could really be on leave and not have anything to do with school.(Not including the emails saying hello and checking on me, but the ones involving work)  I think I really might stop checking my school email altogether, only problem is the mess it creates when it all gets backed up and I would miss the happy emails sating hello.  I could just delete everything as it comes in and only respond to emails to my home email address.

I have so little energy as it is, I am frustrated to use it on trivial things that only up my stress level.  I can't do everything I want to and if you know me, that is upsetting...if you don't, I have a real problem not being able to do everything under the sun and even more so asking people to do tings for me.

On top of exhaustion, the past three days have reminded me how much I hate this disease.  Joints that you don't even realize you use everyday are affected by AS.  Never ever take for granted your back and its ability to support your entire body.  Everything hurts so bad, I just want to lay still, but by the time I am comfortable, my body has started working against me and is getting stiff.

I know I will make it through, but I still have 12 days until I get to restart my AS meds.  Oh please let them go by fast.

Good friends and Good Cookies

Since I was 7, Samoas have been the most divine cookie EVER.  Who knows why? The just really are the best and even better frozen!  I discovered after moving to Athens that they have a different Girl Scout cookie schedule than NW Georgia where I was raised and sold cookies for 11 years.  They order earlier and get them in earlier over here!

So Friday night I got my Girl Scout cookies, delivered by two of my favorite people.  I was so happy to see them and get to visit for as long as we did! Visits have been such a blessing as I recover and I think have made a huge difference.  I am improving more than I ever imagined and can do so much more for myself than I expected a week and a half ago as I struggled to get out of the hospital bed.  That was a defeating experience that makes walking around the house now even more gratifying.  What a gracious God!

March Rain

What a beautiful day today.  I am not sure I want to go outside, but it looks pretty.  I am so thankful for the rain last night; helps me sleep and my bed is now next to the window (so I have more to maneuver with the walker) and the rain was even louder than usual.

As much as I love the rain, it is painful.  I couldn't open a bottle this morning(very frustrating) and getting out of bed was hard because of the stiffness.  (thank goodness my pharmacy knows me well enough to know the 'easy open caps' notation is for real...I can't begin to imagine how to open child safety caps)  I am truly blessed that the rain and weather doesn't affect me as badly as some others I know with AS.

I am truly blessed beyond belief and know that I serve a God who has brought me to a challenge to strengthen me and those around me. He is constantly showing me new things I never would have known without the disease.

No more metal...

Well at least no more external metal. Staples are out and not itching. Yay!  Dr. Mac and his nurse Melissa were very impressed at my walking...I am doing MUCH better than was ever expected.  For that I am thankful and know that the numerous and continuous prayers to a healing God are the cause of the fast healing. 

Also got a new Xray taken this morning and got to see the amazing things he was able to do in the surgery...I actually have four screws and two rods compressing the SI joint.  I no longer have sacroiliac joints thus eliminating the pain that existed before...and I pray that after the healing is done that pain doesn't return. 

Part of my quick healing is also thanks to Dr. Mac's talent and ability to bend one of the rods over my sacrum while staying under the muscle.  If he had cut the muscle it would make healing a much lengthier process.  I am so thankful for the experience and talent of my doctor and the surgical team.

I continue to be thankful for all of the outpouring of love and support from my friends (I would say co-workers, but they are all such great friends it seems to generic)  Visitors are always welcome, I have been napping during the day, but I am happy to see anyone that wants to stop by.

Medically Speaking

The surgery I had was pretty intense and lasted four hours...My surgeon did an excellent job on a very complicated surgery.

He began by cleaning out the bony growth and cartilage in the sacroiliac joints.  Once the joints were cleaned out he created a substance from the bone graft taken from the back of my iliac bones and cemented the iliac bone on both sides to either side of the sacrum.  Once they were glued together, titanium screws were inserted through the iliac into the rebuilt joint.  Each of the screws attached to a titanium rod that compressed the joints together.  By fixing the joints with hardware, the sacroiliac joint will fuse correctly into one solid bone.

I am really hopeful that this will be the only surgery, but the AS has started fusing my lumbar spine and only time will tell if it will have to be fixed and fused as well.

One day , one step

Frustration is still the most challenging part of the whole surgery.  I have learned to live with the pain, medicate the pain or just ignore it.  I have learned how to move without irritating the staples.  Yet I still can't walk normally, I can't reach to the top shelf and most of all I cannot stoop and reach in any direction.  That is the most frustrating part of the whole healing process.

I can feel the soreness of where the bone was cut and the titanium rod that is holding my pelvic bones together.  I know it will all pass eventually and hopefully the AS pain will be improved...unfortunately there isn't a surgery to fix AS completely.

Home

I got to come home earlier than expected and it was such a relief to be in my own bed, despite the pain and difficulty of getting into bed. 

I knew the pain would be bad, but the crazy thing is my pain tolerance is already so high, the pain was never worse than before surgery.  It is just different and in different places.  The limitations on my movement is the most frustrating part of the whole surgery.  I love learning, however relearning to walk is not that exciting. 

It is amazing though that the SI pain from before surgery is gone.  Once the healing is done I will be so happy to see if it really is gone...