Blessings

It has been so long since I have had the energy to post.  You learn to conserve energy however you can when you live with an autoimmune disease. 

I finally have hope of getting my energy levels back up.  My regular physician referred me to a hematologist after my blood count and iron levels were off.  He has scheduled me for an iron infusion this Tuesday...I may begin to feel even more like myself! What a blessing!

I also have a very good friend that is an oncology nurse that is very familiar with iron infusions. She is a blessing!

I was able to celebrate Palm Sunday at church this morning and was blessed by an understanding of passover.  My church family is such a blessing!

I am surrounded by friends that care so much for my health and remind me that God's plan is in place and he provides everything we could ever need.  So thankful for the wisdom brought into my life. I am blessed with the best friends ever!

I continue to heal everyday and feel better from surgery.  There may in fact be more surgeries in my future,  but right now my focus is on getting better. One day at a time...Living with a chronic illness is a blessing that has humbled me and taught me to accept my my portion and my cup and be thankful even in the worst circumstances.


⁶ Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. ⁷ And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4:6-7

I am blessed that prayer works and that the Healer works in ways we will never understand.  Easter has and always will be my favorite holiday.  This Easter I am the most thankful for the abundant blessings in my life! Everyone was created to be a blessing to someone here on earth and everyday is a chance to receive and to be a blessing.

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.