On being incredibly blessed..

Dear Friends

While I usually use this blog as somewhat of a journal and a way of expressing all the emotions that I experience thru this crazy rollercoaster, I'd like to take the opportunity to say how incredibly blessed I am, despite my medical issues and pain. For instance, my mom came over today and cleaned my whole house from top to bottom since i've have spent the past 3 days in bed with bad pain. I enjoy cleaning (oddly enough) but housework is something i cant really do anymore, especially more strenuous stuff like mopping and vacuuming. I have the best parents in the world... I really do.

My mom and dad have supported me since day one of this journey. My parents have both been extremely involved in everything, from going to important appointments, to fixing meals for us, to running errands for me, to driving to me to appointments...the list goes on and on. My mom spends hours on the internet researching the newest pain treatments, the best doctors, dietary changes and supplements, and anything related to chronic pain.

In addition to all this, they are an extremely strong source of emotional support for me. I also have wonderful, loving, supportive in-laws. Harrison's parents sent me flowers and cards of encouragement all the time. They are in constant prayer for both of us as we deal with the unexpected. Even though they are now in Nashville, i feel their love and support daily.

I have a bad habit of feeling that if i talk about what i am going thru too much to people, it will burden my family and friends, so i tend to keep my emotions to myself most of the time which usually ends up in me reaching a breaking point and breaking down. Despite the fact that i keep a lot to myself, I know I have amazing friends all over the country that love me, support me, and pray for me. I am trying to work on reaching out to people more and opening up to friends that i trust and that offer to be there for me. I definitely need all the love and support I can get!

And last but most important, the love of my life, my best friend, my rock, my everything...Harrison. I always thought our love story was interesting how we dated, broke up, stayed friends, got back together, endured a long distance relationship for almost a year and then us both living in Nashville and eventually getting engaged. I knew how much timing and especially God's timing had to do with us getting together and especially now, looking back, getting engaged and getting married (we got married 6 weeks after my pain same back...coincidence??) God most definitely hand picked my husband as my perfect other half. I have never met anyone who is as compassionate, understanding , and loving as Harrison is. He works a full time job, yet he cooks dinner for me almost every night and will bring me my meals in bed when i cant get out of bed. He always comes home with flowers or little surprises. He will do anything to make me feel better. He will wake up in the middle of the night when I'm having a bad night and will scratch my back, or get an ice pack for me. He always puts me first and always stops me if he thinks i am overdoing it.

As I have gotten back into photography, Harrison has been so supportive and encouraging and takes me places and plans little photography outings. He is so sweet and loving. I can not imagine my life without him by my side every step of the way. I know everyone says this but I truly am the most blessed woman to have found my perfect companion for the rest of my life. I love him with all my heart.

To all who read my blog, I am blessed to have you in my life because by reading this, you are supporting me and for that, I thank you.

On being in pain...

So I have a thought....with all the emotions i've been going thru and dealing with lately, its been hard to separate everything and figure out which emotion is actually leading my feelings. Things have been remarkable difficult lately. This time of year is like the "anniversary." So i'm going to try to break down my feelings by each emotion to try and sort through everything. While doing this publicly may be something i decide against down the road, for now, this is an outlet that works for me.

Right now, this is my bedside table...it consists of all my medications for pain, muscle tension, muscle spasms, sleep, anxiety, topical creams, etc. My bedroom is my sanctum. I have everything i need in my bedroom at my fingertips. My floor next to my bed has my heating pad, my books, bible, journal, and magazines, and computer. I have my tv, my dvd player, FRIENDS, Gilmore Girls, and netflix to keep my occupied or distracted (whichever I need at the moment).

Pain is such a complicated process...especially chronic pain. At a moments notice it came become so severe that moving is out of the question and i automatically access the quality and characteristics of my pain to determine if its bone pain, nerve pain, muscle pain, or all the above. I have to figure out what medication will best work for the type of pain I am in. This process happens at least once every day...If i'm lucky it will skip a day or 2 if i'm really really blessed.

I dread the night time because it can be the hardest. Its when the world gets quiet and the distractions of the world fall away and i start to think....i mean really think about my life and my pain. I'm hardly if ever comfortable. Sleep is a rarity...at least the good, deep, restorative sleep that makes you wake up feeling rested, happy, and ready to face the day.

I hate relying on all the medication to function or get thru each day. I worry about everything that I take...of course i never take more than allowed and never take it all at once but it scares me. Being in pain scares me. Not knowing when or if the pain is every going to go away absolutely terrifies me. I'm trying everything within western and eastern medicine to fight the pain. Right now i'm focusing on massage therapy. I really like my therapist and after my massages i usually feel better for a couple days but i wish it would last longer. I've been going every 2 weeks for the past couple months so i'm hoping that maybe one day it will last longer. I think i'm also going to start going to go back to acupuncture, which i've done before but then reached a plateau where the cost wasn't outweighing the benefit so i stopped going last fall. I've also been to this other place of western healing that works with a specific type of heat called far- inferred heat the deeply penetrates the body and promotes healing.

The weather we've been having in Knoxville lately has really messed me up. A few weeks ago, spring was in full swing and it was gorgeous. I was starting to feel better but now its been cold, damp, and all around yucky and gross again which makes me feel terrible and have more pain in my neck and joints..knees especially.

Well to offset this cold and hopefully help my pain, I'm going to go soak in a hot bath for a while and read a book. Thanks for reading. Lots of love to all those out there who continue to support me.

So much to say but no one to talk to.

So its been a really long time since i've even looked at this blog. I guess I started to avoid it because i always felt like I was saying the same thing, over and over. I would update, trying to sound like i still have some faith in my situation but most of the time, especially lately, I don't. Ever since Christmas, the pain has felt like being on a non stop rollercoaster that never stops. While there are brief moments in this ride that slow down and allow me to take a few breaths, I feel like right as I catch my breath, I start heading downhill so fast its hard to see or think straight.

This time of year is hard because I kinda feel like it the anniversary of one of the most pivotal, hardest times of my life. So often I feel like the world keeps turning, everyone else keeps living, and I am stuck in the same place as I was 2 yrs ago. Countless procedures, injections, medications, doctors appointments and even surgery have left me exhausted but no different. I am Weary, run down, with less hope, and with my positive outlook on things getting more dim daily. I think the past couple months have taken so much of a toll on me because I see the toll its taking on the world and the people around me. Harrison is exhausted and has no idea what to do when the pain comes so strongly that it brings me to my knees. I can see the pain and suffering that he deals with. I've also watched the toll on my parents as they do everything they know humanly possible to help me. People tell me on a regular basis that they don't know how I do it. They don't understand how I live with the pain and with the frustration on not knowing why its there or how to fix it. I try to remind myself how blessed I am because I have so much support and I am grateful and fortunate to still be getting some income while I'm unable to work. But its just not the same. There is no comparison for the joy and happiness I felt when i held a 2 lb baby or when i got to place a baby in their mother's arms for the first time or witness the first bath, the first bottle, the first time in a crib, etc. All those moments resonate with me and some days the only thing that keeps me going is thinking about how happy i was then.

Working in the Nicu filled a void i didn't even know was there until i had to stop working and all of a sudden i felt such tremendous loss. Its hard watching a lot of couples I know who got married around the same time Harrison and I did start to get pregnant, decorate nurseries, pick names....because honestly I feel like it should be me. This has been one of the more difficult, deeper battles I've been fighting lately. A former Facebook addict, I can hardly even get on anymore because its become too difficult. Every time i get on, I see someone else who has posted that first picture of the positive home pregnancy test, or I see the cute pictures of the mother to be proudly showing off a growing belly. It makes me ache. I feel like that dream is getting farther and farther out of reach and even if its not out of reach, I think of everything that would have to change for that to become possible. I've been trying for 2 yrs to solve this pain dilemma and I feel stuck in 2009. What is it going to take, and more importantly how long is it going to take until I am healthy enough, strong enough, and have enough pain control that I could have a baby or even take care of a baby. I have so many questions, doubts, fears, and painful insecurities that I doubt I will ever fully know the answer to...

Neonatal Nurses Day

Today is bittersweet. I still most definitely consider myself a neonatal nurse. Its who I am. Its how I define myself. At the bedside of some of the sickest babies, I found my passion, my career, and my life's purpose. 18 months ago, life changed. I never would have thought that I'd be gone from work for so long. I never thought I'd be on disability and dealing with a life of chronic pain. I miss being with those babies so much it hurts. I've spent the last 2 hours looking through pictures and blogs of NICU babies and it only makes me miss it that much more. On the up side, it only inspires me and confirms that my heart is still in the NICU and my dream and desire will always be to get back in my scrubs and get back to the bedside. Is it sad that all my scrubs still hang in my closet, organized by color, just like they always have been even after 18 months away from the job? I guess i keep them there as a reminder. I see them everyday. I think of all the babies i took care of while wearing those brightly colored uniforms. I think of all the friendships i made in them. I think of all the laughs, all the tears, all the emotions that I have gone through while wearing them.

I've finished about 2/3 of my masters work to become a neonatal nurse practitioner. And just as I plan on one day getting back to work, I plan on finishing what I started and get my masters, even if I can never for as an NNP. I'll get my masters someday. I wont let my current health status keep me down and out of work forever. If i knew how to post pictures, I have several I'd love to share. I had so many families and babies that touched my life that I have pictures of. I know I say this at the end of most entries, but my continued thanks goes out to everyone who has loved, supported, and prayed for me during the past year and a half.

Vacation and Cleveland

I have big, big news to share that i will get to in a minute... But first, Harrison and I are on our first vacation(besides our honeymoon) as husband and wife. I am writing from Hilton head island in South Carolina. I have only been here once in my life and that was when i was in 5th or 6th grade with my family and the family of my best friend, Megan. Harrison's family owns a house down here so he has been vacationing down here his whole life. In college, he brought some of his fraternity brothers down for spring break 2 years in a row. Growing up, his family and 3 others would come. They called themselves the Sla-den-has-bows (the first 3 letters of each family's name. They came together for 14 years!! So needless to say this place and Hilton Head itself holds a lot of sentimental value. He can point to pretty much each place on the island tell a story. We left early Friday morning and our close friends Hannah and Rusty came up just for the weekend and left about an hour ago. Harrison and I are staying till Thursday. This vacation has been planned for awhile but it couldn't have come at a better time. We found out on Monday that I was accepted as a patient into Cleveland Clinic and I have an appointment August 31 at 9 30 in the morning. My mom and Harrison will drive up to Cleveland, Ohio on Monday the 30th (its about a 7 hr drive) and stay in a hotel. As of right now (this could change) I am going in under the care of a spine specialist. I'm nervous but ready for this step. I have no idea what the process will be. I have no idea how long I will be there. My first visit could last a few days or a week....i don't know. I could only have to go up there one time or I could have to make return visits to Ohio every month. I just don't know what to expect. So I will just find out when we get there i guess. Please be praying for me. I will update as I know more. I will find out more this week. Please be praying as I deal with the phone calls to insurance and doctors offices to get medical records and things like that. It can be a very frustrating process but I know it will be worth it. I am just praying that these doctors in Ohio will put the pieces together and figure out my health problems and hopefully find a solution. If they can't cure it completely I am at least praying for answers which would lead to pain relief and getting back to some of the activities in my life i used to love. I can't thank you all enough for your prayers....you all made this happen so keep he prayers coming. I love you all. I'll post again with updates probably this week.

Cleveland Clinic

Dear friends,

After months of nothing really to report except going to see doctors and having tests run, I do have something to report that I am hopeful maybe the answer to finally finding out what is going on with my health. My wonderful mother-in-law Cary has a connection with a doctor at Cleveland Clinic and talked with him at length at Bill Haslam's party for the republican nomination. He told her to send him a brief synopsis of my history which we did. After that Cary was given a 2 page patient registration form to fill out which we also completed. We are now at the point of gathering my patient records from my doctors here in Knoxville. We are not sure how long the process will take for me to actually take to become a patient there. Cleveland clinic has a very good reputation. My aunt was having some medical problems and saw some of the best doctors in Richmond, Va over the course of many months. She ended up going to Cleveland clinic and was diagnosed in 3 days!! I can only pray that I will be so lucky. I don't like thinking about being hospitalized and having a multitude of tests run on me, but if it is a means to an end, I am prepared to do whatever it takes to get my life back. My biggest fear is that even the most advanced diagnostic center won't be able to put the puzzle pieces of all my health concerns together to come up with one treatable diagnosis. The least I can hope for is less pain, more days where the pain is tolerable without heavy pain medication, and the possibility of returning to my job part time. If I could even spend one day a week or one day every other week taking care of those sweet, innocent little neonates, it would bring so much joy and meaning back into my life. That would be the most amazing gift of all after these difficult 18 months.

I know I say this with each post but I want to thank all my wonderful supportive, loving friends who read this and pray for me. I cant thank you enough. You are all wonderful blessings from God.

Nothing new to report

Well friends, I wish i had something new or any good news to report but i don't. Things are still pretty much the same. Still in pain, still on a million medications. I guess my only new symptom to report is that i am getting several low grade (99-100) fevers multiple times a week. Even though they are low, add in the neck pain and joint pain and most days i feel like i have the flu. I had an Electromyography(EMG) test...a test I have had before which was incredibly painful and traumatizing. Luckily, the second test wasn't as bad. Test results showed no nerve damage which is good I guess but I'm to the point where I just want some test to show something. I am probably going to start seeing a spine specialist just to have someone medically understands everything that has happened to my neck. I just dont know what to do anymore. I'm loosing hope fairly quickly these days. Just thought I'd update to say nothing new to report.