Lessons in Life

It is hard to believe the adventures and lessons of the last two or so weeks.  I am thankful for each new day and birthdays make me thankful for each year and I have made it to another year.  God knows how many more I have, but for now I am responsible for making the most of my time here.

My birthday fell on good Friday this year (the first time I can remember that happening) and another first was a funeral on my birthday.  God knew about this long before any of us did...my aunt that retired to Tennessee was sent to ICU in Knoxville after several tests at their local hospital, and only a week later they had exhausted all of the treatment options and my uncle had to make the hard decision to remove life support.  She was admitted with an awful migraine and had leukemia that wasn't found until the first hospital did blood work.  Migraines were a usual thing for her and none of us imagined there was clot on her brain causing the headache.  At UT Knoxville they were treating her for the leukemia and watching the clot to see if it was going down.  Unfortunately it was not, and a neurosurgeon had to perform surgery in hopes of relieving the pressure.  The low white count and platelet count was made worse by the chemo and surgery was not advisable, but the only option.  Sadly she came out of surgery on life support and was gone shortly after it was removed.

None of us know the number of our days and my aunt lived life to the fullest and enjoyed life.  My uncle is my mother's younger brother.  They have always been close and we spent several Christmases that I remember with him in Florida before he married.  My mother is able to remain composed in just about any situation and this was no different.  She was there to help my uncle through this and get through the first few days alone.

I was able to drive myself up there the next day with minimal pain, even though I am still recovering from my surgery.  God has blessed me with a servant's heart and I am fulfilled when I can serve others.  I spent the next day getting all of the photographs together and ready for the funeral on Friday.  What a blessing for me to be able to use my talents for others.  After everything was over and the 20 or so people had left the house, mom and I began the work of cleaning out and trying to organize things to help my uncle ease into this new chapter (Several times we talked about the chapters he has already closed in his life and this is the start of something new). It gave me peace knowing that he will be alright, and getting to know his neighbors that live on the mountain are there to help with anything he needs.  They are a great 'family' that all live there because they are retired and enjoy the mountains.  (many of them also retired from Florida and from law enforcement, just like my aunt and uncle)  I was able to call and make changes to the wireless bill and get a higher speed internet up and running for my uncle.  I am blessed to have this time without the burden of work where I can absorb God's lessons and be a help.

I have also gained a new four legged friend named Lily.  I was able to rescue her from the Newport animal shelter in TN.  Her owner couldn't keep her where they moved to in TN.  She is a white, four year old, miniature poodle that had some matting and fleas that were taken care of at the groomer.  She is leash trained, house trained, crate trained and loves to ride in the car.  Her temperament is mild and sweet.  She is an excellent guard dog and follows me around wherever I go.  We have been walking around the complex a lot and I am in love with her.  I am so thankful that we met up when we did and she has a forever home now.

I continue to be thankful for the blessings in my life and His continued healing.

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.

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...

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.