Wednesday, September 15, 2010

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.

Sunday, August 22, 2010

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 all made this happen so keep he prayers coming. I love you all. I'll post again with updates probably this week.

Sunday, August 15, 2010

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.

Saturday, August 7, 2010

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.

Wednesday, June 30, 2010

Some good news!

This entry will have a little bit of personal info about me in it so read on if you like or just scroll down to the final paragraph when i talk about the good news....
So ever since I started having menstrual cycles, I always had some issues....extremely severe, painful cramping, and some other issues but my mother has similar issues so I just always figured it was familial. Well about 6 months before Harrison and I got married, I got on birth control for obvious reasons and it was a God send. It really helped with all my problems around "that time of the month."
Well with all of my health issues that I've been dealing with since before we got married, intimacy has been an issue, in the sense that it happens rarely. I struggle with alot of guilt about this because I dont feel like I am fulfilling the job of a being a wife. Harrison and I were together for nearly 4 yrs and made a vow at the beginning of our relationship to save that part of the relationship until we were married, if that was the road that God would lead us down. Obviously, God made us perfect for one another and planned for us to be together. Guilt can be a very defeating emotion. So its been really hard for me. He says he just doesn't want to cause me any more pain, but none the less, the times that we are intimate are very painful for me during and after. I would have alot of pelvic pain. I had mentioned this once to my ob/gyn in nashville and she had referred me to a special physical therapist but i only saw her once before the moving and things started.
Well when i saw my first pain dr here after we moved, i mentioned that i had pelvic long story short, I saw a specialist in infertility and pelvic pain. We talked about my cycles when they first began, now, and the intimacy issues. Before even examination he said that I sounded like a classic endometriosis case. Endometriosis is when cells of the uterus start to grow in other areas of the pelvis that the uterus and it can cause pain and it is the number one cause of infertility. He did his examination and did confirm the diagnosis and scheduled me for the best and only real
GOOD NEWS: So on Monday, I had laproscopic surgery to remove the spots of endometriosis and he didnt find any! What he did find upon examination with the scope was alot of scar tissue, especially around my left ovary and it had attached itself to the pelvic wall. I also had alot of scar tissue and adhesions on other areas of my uterus which he removed. He said that everything else looks great and it should be a one time surgery, whereas if it had been endometriosis, i would have most likely had to have surgery every year or so to keep removing the spots and keep my chances of getting pregnant high. So I am definitely relieved that my infertility should not be affected. As far as recovering, it hasnt been bad at all. The post op pain has really been nothing compared to what I usually deal with or like my post op pain after my neck surgeries. So praise God for finally some good news that was very important to me. I was devastated to think that we could have bad infertility issues. Thanks to all who prayed for me on Monday.

The only other news I have is that I am seeing my second my pain doctor here in Knoxville tomorrow and I'm hoping this goes better that it did with my first pain dr. I pray that the dr and I will understand each other and that he will have compassion and empathy for my situation and will really listen to me. Please pray for this as well. Thanks so much to everyone who has been so supportive. I love you all!

Saturday, May 15, 2010

Doctors, doctors, and more doctors...

Well if the title of this blog gives you any indication, doctors appointments have pretty much consumed my life since we moved back to Knoxville. Everything went smoothly with the move and we got settled into our new house pretty quickly with alot of help from my parents, especially my mom. Luckily the house was pretty much ready to move into. We didnt have to do any painting or anything before moving in, although eventually we probably will repaint the guest room. Reese has adjusted well to the new house. She loves the big back yard and all the room to run. She has made friends with the dogs on the 0ther side of the fence. At night and on weekends, there is a gate that we open that lets the dogs go from yard to yard and they play really well together.
Let me try and recap all my doctors appts and what we have found out (which isnt much unfortunately). My first appointment was to establish a new primary care doctor. The doctor I chose is a good friend of Harrison's family. I informed him of my whole history and all my current issues with my neck and all my joint pain. He reccommended a round of oral steroids to see how my body responded. He recommended appts with a rheumatologist and neurologist. I started the steroid pack and within about 2 or 3 days, my pain was virtually gone. It was a miracle. This meant that I had some form of inflammatory process or autoimmune process going on. With my symptoms, I was almost sure that i had rheumatoid arthritis. When i went a few weeks later to the rheumatologist, he did a very thorough physical exam and did endless amounts of blood work. He said that I presented as a classic fibromyalgia patient, not RA. And all my blood work came back normal, as did xrays of my knees. While I was discouraged to not get a solid answer for all that is going on with my body, the fibro does explain some things....although its not a very well understood or easily treatable disease.
The next appointment I had was with the pain clinic here. I can not tell you how long and how much of a pain it was getting an appointment with them and getting them to get my records from Nashville. The appointment was very much a disappointment. I met with the nurse practitioner of the head doctor of the practice. Lets just say she didnt have the best bed side manner. She was rude and made comments that made me feel as though she thought i was just a drug seeker. Apparently, because of abuse issues of oxycontin in east tennessee, this clinic does not prescribe it. This is the main drug I have been on for my pain for over a year. I dont have a problem switching medications, I am just terrified....TERRIFIED of withdrawal. I voiced my concerns and she showed no sympathy or emotion. I left the appointment feeling very judged and very uncomfortable. I have an appointment next week with the main doctor and I am praying that it goes better than the first. I am very close to the nurse practitioner of the pain clinic in Nashville and I had a long, long talk with her about the appointment and how i was feeling and she told me that she would continue treating me until I was settled and comfortable with a pain clinic here. So it gives me some sense of relief knowing that I have a back up plan.
The subject of my medication is such a tough issue for me. My bathroom looks like a pharmacy. I am taking more than 10 pills a day now between painkillers, high dose anti inflammatories, medication for nerve pain, anti depressants(which are also supposed to help with the fibromyalgia) and others. It scares me to think what all these medications are doing to my body. I am scared that it will affect my ability to get pregnant, stay pregnant, or have a healthy baby. If it werent for my health issues, Harrison and I would probably be starting to try to have a baby, but of course, that is out of the question with all the medications I am on and not knowing exactly what is going on with me. I am going to go see an ob gyn specialist soon to discuss some of the issues and concerns. I have days when i just want to be clean of everything that i am taking and just flush everything down the toilet but i know that i cant do that because stopping some of these drugs cold turkey is extremely dangerous.
I also had an appointment with a neurologist. He is just going to address the neck pain. He put me on a medication for nerve pain that I have to work my way up on the dose up to 600mg a day. So i am in the process of that right now. He also wants to do an EMG study. For those who remember, i have had this test done last year and it was traumatizing. It is a test that uses shocks and needles in your muscles to test for nerve damage. It is very painful and pretty barbaric if you want to know the truth. I'm not sure when i am going to have it done.
After all these appointments and only finding out about the fibromyalgia (oh and I have carpal tunnel in my hands) we are going to meet again as a family with my primary care doctor and assess where we are. It is so frustrating to be in this place right now. I have all this pain all over my body but all the tests are coming back normal. I feel like nothing is ever going to explain why i feel the way I do. A few weeks ago after a doctors appointment, i hit one of the lowest points that I think I have ever been at during this whole process. I feel as if my life has lost most of its meaning and purpose. All I do is go to one doctor after another. I'm tired of living the life that I'm living. Every day, i miss my job more and more. I miss having a reason to get out of bed. I miss having goals and being driven to accomplish things. I feel lost right if i'm in the woods in the middle of the night, not knowing which way to turn to find my way out of all the darkness and every time i move, i run into something else blocking my way.
I do have some wonderful, joyful news to share. On May 8, after a long, tough road, my sister Katie and her amazing fiance Johan got married on top of a mountain in Gatlinburg. There wasnt a cloud in the sky, which is truly what they deserve for their future after all they have endured the past year. For those who dont know, Johan was in a very bad motorcycle accident back in October. He suffered many injuries, including a minor stroke. He has had a miraculous recovery and has fought hard every step of the way to be where he is today. It was a wonderful celebration and great to see all of his family from Denmark under joyful circumstances. I'm so happy for them and am thrilled to finally have Johan as part of our family.
Well i guess thats all for now. I wish i had good news to share about my health but as always, i'll try and keep everyone updated as best as possible. As always, thanks for reading.

Saturday, February 27, 2010

New job, new city, new house, new life?

Dear friends,
Sorry so long since the last post. Unfortunately, the spinal cord stimulator trial failed, and failed miserably. The pain specialist removed my electrodes after less than 24 hrs versus the scheduled 6 days. Apparently, because of all the hardware in my neck from my surgeries impeded any electrical stimulation from reaching my neck. They tried everything they could think of and I never felt anything above my shoulders. Apparently, a normal "impedence level" is between 100-300 and my level was upwards of 1500. Apparently, that is a bad sign that it wont ever work, at least implanting the electrodes in that fashion.
The other big news is that Harrison has accepted a job in knoxville. He is very excited about this new opportunity and after alot of prayer, we decided that the move would be a good thing for us, especially after my failed trial. He starts mid march as a project manager for Architectural Graphic International (AGI). AGI is a national sign company with clients such as Ford, Mercedes, Jiffy Lube, just to name a few. He is happy to finally be on a salary based job with normal hours and specific job tasks.
After lots and lots of looking via internet and in person, we found a house that we put an offer on and the sellers accepted. I never thought we would buy a house. We originally planned on renting, but God opened doors (literally and figuratively speaking) and it has been a smooth process thus far. We have the inspection next week. Harrison can either start his job on the 8th or the 15th depending on what he wants to do. We close on the house on March 26 so i have no idea how the next few weeks will play out for me and where I will be. Moving from Nashville was a bittersweet decision for me. I'm sad to leave friends and sad to leave my first real job, especially since it was a job i had always planned on going back to. Now, if I ever get well enough to go back to work, it will be at a different place, with different people. Its kinda stupid but I'd always sorta envisioned my first day back at vanderbilt after my long leave of absence. I envisioned everyone being happy to see me, me being happy to be back, and holding and caring for my first baby since my last day almost a year ago. I envisioned it being such a happy day for me. A victory over the pain I've been dealing with. But that day will never happen. I guess its more that i wanted to prove to myself that I could overcome whats been keeping me so down, and maybe i will someday, but it wont be at vanderbilt. I've made some of my best friends in my life at this job and in Nashville. Leaving these people will be more challenging than leaving the job that still is waiting for me. But again, I think now more than ever, i need my family to be near. We are going to put 110% into figuring out whats wrong with me. and maybe, just maybe, my life can go back to some type of order. I can find a focus or a goal again to focus on.
Please continue to pray for Harrison and I as we transition over the next few weeks. Pray for me as I leave my former dreams behind and pray I can find new dreams in Knoxville. As always, I appreciate all the love, concern, and prayers. Thanks for reading.

Sunday, January 24, 2010

Spinal cord stimulator

Dear friends,
Sorry its been so long since my last post. Nothing has really changed so I just i didn't have much to blog about besides my emotions which i figure most people don't want to necessarily hear about. I guess the last time I posted was about my sister's fiance Johan, who I am so happy to say, has made a magnificent recovery. As far as myself, again, not a whole not a whole lot has changed. I've tried more therapy, injections, and acupuncture and got little to no relief from any of the procedures. I stopped physical therapy per my pain doctors orders because most of the time it was causing me more pain after the fact than helping. So after many talks with the medical sales rep, talks with my parents, etc, I am going to start a 7 day trial of a spinal cord stimulator on Thursday. The SCS is basically a pacemaker for pain. Electrodes will be placed in my neck that will help to block pain signals. For the trial, all that will be implanted are the electrodes. The wires and the battery will be external. With the SCS i can have different programs and settings depending on the location and intensity of my pain. I turn it off when i drive, but can pretty much have it on as much as a want. The success rate is pretty high. They say with the trial, since the electrodes are not anchored to anything, my pain can decrease 40-50%. With the permanent implant where everything is implanted in my body ( the wires would run down my spine and the battery would be implanted in my loved handle, upper buttocks area. The permanent implant could relieve 80-90% of my pain. The permanent implant would be an day, outpatient procedure. Friends, please pray that this treatment works. Its a big step and a big commitment, as it would most likely be in my body for 10-12 years.
Another prayer request is for Harrison as we go through this process. He is so supportive but it will be a long week. I wont be able to shower (or get my neck wet) so i will probably be washing my hair in the sink and sponge bathing. So i will need his help even more this week. Luckily my mom will be coming up for the week so she will help as well.
Some other big news in our life is that we have a new addition to our family in the form of a dog. We have been talking about getting a dog for awhile now. We went to the humane society "just to look" and when we rounded the corner of cages, there she was. She has the cutest, sweetest face. She is a 5 month old chocolate lab/german pointer. We took her outside to play with her and she pretty much immediately took to us. We put her on hold that night, went to PetSmart and went back and got her the next morning, about 6 days before Christmas. She is super sweet and despite the high energy level of both breeds, she is relatively low key. She is dark chocolate but at the end of her nose has an area of lighter brown. She also LOVES peanut butter so we decided to name her Reese. She is a puppy and has her moments of chewing on things she shouldnt but again, for the most part, she is a great dog, She loves to snuggle and give kisses. She has been a good companion for me during the day.
I will try to remember to post a few days into trial to let you know how i'm doing. Please pray for me during the next week. As always, your prayers and support are so meaningful to me and on some days are the only thing that keeps me going. Emotionally, things are getting much more difficult for me. As the options come and go with no change in my pain, my hope that I'll ever live a pain free life becomes more and more a distant idea. So as you can understand, my hope and my joy in life becomes a little dimmer each day and that is very difficult. I know my hope and joy should come from the Lord but I am having trouble even finding that somedays. Friends, I just need lots and lots of prayers for many many things. Thanks for reading.