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.

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.

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.

House Arrest

Living with RA or as I recently found out, AS is no fun sometimes.  Ankylosing Spondylitis is a type of RA that causes calcification and fusing of the vertebrae and sacroiliac joints.  Looking at the Xrays I only have the beginning stages but for three weeks I have been in pain from inflamation in these joints that are unable to move the way they should.

I went for four straight years and never missed a day of work, and then last school year, I had health issues I couldn't ignore and this year, only in November, I have missed numerous days. To be specific, 7 of the last 15 school days and I will be out all next week trying to get an epidural to stop the low back pain. Then we have a week for Thanksgiving, so hopefully two straight weeks will get me back on my feet.

I am surrounded by supportive friends and coworkers that may not understand the joint issues, but they do understand that I am in pain.  They even sent an edible arrangement.   Yummy!

I am truly thankful for them as well as a doctor that thoroughly went through my test results and wants me to be pain free and live well.  I am going to visit an endocrinologist about my thyroid and hopefully start physical therapy in addition to the epidural.

I am hopeful!

Weekends...

I try everyday to be positive and care more about others than my disease, but everyone tells me to take care of myself.  I try to do both. How can I when I feel awful?  I want a clean house, I want the laundry hung up and clean, I want to be pain free. Weekends are a much needed time to rest and for me to recuperate but my personality doesn't function well just doing nothing.  It is such a constant cycle.  

Fortunately, Dr. Nik is concerned about my pain.  The shots are painful, but the relief is well worth it.  Next week I get to go back to Dr. Nik again and to Dr. Griffin.  I am hoping for Dr. Griffin's wisdom to guide my treatment.  As much as I hate the pills, I am truly open to more meds if it means a decrease in pain.

I am on year number seven of teaching and for 5 years I never took a day off, even with this chronic disease.  It is truly a progressive disease.  I hate being out.  Teachers understand that being out is more work than being sick and at work.  Unfortunately, as I  explain to my sweet kiddos, the doctors don't work after school.  It creates even more anxiety for me having to be at the doctor. I hold out hope that the pain will be gone sometime soon...

Back to the foot doctor tomorrow

Tomorrow I go back to visit one of my newest and one of my best doctors.  He is a podiatrist and is very understanding of my pain and the importance of getting rid of it.  I am very happy I made the switch.  I am also changing Rheumatologists soon.  Current doctor is not understanding of the pain and managing it. The steroid shots are not a positive of tomorrow's visit, but the relief outweighs the temporary.  Bible study today was great, it always is.  Another blessing He has brought into my life.  I am so fortunate to work with such wonderful women.  We learn from one another constantly.  God is good all the time!