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 pain...so 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 treatment...surgery.

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!

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 now...as 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.

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.

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.

Johan

Dear friends, I am sad to report that the day after my last post, my sister's wonderful fiancee, Johan, was in a bad motorcylcle accident where he sustained many injuries. The wreck occured late at night on a windy road up in the montains notoriously called "The Dragon". Due to weather, he could not be flown to the hospital but he had to wait nearly an hour and a half for an ambulance. Luckily his best friend Svend was with him the whole time. If you havent noticed, Johan is not a southern boy. He was born in Denmark, moved to the states (California) around 10 yrs ago, then to Tennesee. Once he moved to TN, he was in a relationship and had a beautiful daughter named Silvia who is almost 3. Johan and Katie met back in January when he came into the red cross where she works to fufill a new years resolution to help more in the community.

So back to the wreck, he had a collasped lung, broken pelvis, broken vertabrae, tore a hole in his bladder, tore pretty much everything possible in his right knee. Then, a few days after the crash when he was considered stable but still in the ICU, my sister noticed his eyes not tracking and his speech more slurred and he was noticable more confused. The doctors and nurses blamed in all on the pain meds but after much pushing, and MRI was done and it was found that he had a minor stroke. At this point, I went home for almost a week to be with my family and support johan and my sister. He was moved recently to a rehabilation facility and is doing remarkably well. He is a fighter and the doctors are confident he can make a full recovery. You can follow his progress through is caring bridge site: http://www.caringbridge.org/visit/johanlarsen

Please pray for his progress and my sister and entire family while they support and take care of Johan. Johan's mother Lillian is in town indefinitely right now so she has also been a major part of his recovery.

I willl try to update on myself soon, there is alot to report. Its been a horrendous week and I have mostly been bedridden. I am excited to be in one of my best friends weddings this weekend but I am unsure how much I can participate in at this time. Please pray for me this weekend and I will update next week. Thanks.
Beth

Lots to share

Preface: this turned into a long one.....read as much or as little as you like.

Ok, ok, so i'm not as good about updating the blog as I want to be. Its hard for me sometime to even put my feeling into words somedays. Somedays, i'm in too much pain to sit up in bed to type on a computer. Excuses aside, here I am. So lets see whats happened lately....On September 29 marked my official "6 month leave" from work so I applied for long term disability. They are still in the process of reviewing my claim and I am still waiting to hear whether or not I will be approved. Of course the doctors didnt fill the form out correctly the first time so they had to resubmit it which has lengthened the process. There shouldnt be any reason why I'm denied but I'm still nervous and just ready to have the weight lifted. I completed my post op rehabilitation therapy but was still having pain so my therapist referred me to a different group of physical therapists still within vanderbilt that practice a different kind of pt called myofascial release. Its kinda a big long word that mean massage. Basically in my case, i have so many muscles and muscle groups that are literally tangled in knots because they are so tight and have been for long. So myofascial release uses manual techniques to get the muscle groups let go and relax. It usually feels good during but afterward i experience pain because it changed the dynamic and the make up of that whole area and my spine is having to learn to support itself more. The night after my first real session, I actually ended up in the ER. This would be visit #4 for those keeping count. We went to vanderbilt this time and had to wait a couple hours, but once i got back to a room and they looked up my history, they treated my wonderfully. We ended up staying for about 7 hours and I was given pain medication through and IV as often as I wanted till I was comfortable. We got home at 5 30 the next morning. Needless to say it was a long night.

Two days later I FINALLY got an appointment with a new pain specialist, Dr. Sun who is not associated with Vanderbilt. He also was wonderful. He said that his first priority was to get my pain under control with the use of medications. He added some, increased some doseages of others. I wont mention specific names of medications but I'll just say they are very strong. I have one medication that last 12 hrs that I take twice a day and I have another that I take when I have "breakthrough pain". Then I even have another that I take when I am having my involuntary jerks and spasms. I'm still on the nerve medication twice a day as well. My bathroom looks like a pharmacy at this point. The long term plan is to try another round of injections and minimally invasive procedures over the next couple months. If that doesnt work, we are looking into what is called an implantable intraspinal stimulator and/or implantable spinal pump for medication. The spinal stimulator is "the pacemaker for pain" and the doctor said he has good results with it his failed surgical patients. Basically what it is is they implant this device in my lower back and run wires with electrodes on it up into my neck. The electrodes will give gentle electrical stimulation to my nerves which will block my nerves from sending pain impulses. My next appointment with Dr Sun is October 23, so pray for all these little procedures I'll be having and for my family and I as we decide on the spinal stimulator and or pain pump options.

Since I've been on the new medication protocol, it has definitely helped. Overall I am taking less medication for breakthrough pain but the daily medication is very strong and I do have days where I feel kinda loopy. I absolutely can not drive on these medications so I am back being stuck at the house most days. My wonderful husband drives me to all my appointments each week, usually 2 or 3. I can not even express in words how amazing Harrison has been. As a caretaker, as a husband, as a friend, as a driver....everything, he has been my rock and the main reason I keep fighting through this. I can't imagine having anyone else support me any better than he has.

I also have had some amazing friends who have been very supportive as well but with my friends, my family, and Harrison, i deal with alot of guilt that I am putting my loved ones throught this. I feel guilty that Harrison immediately after saying "I do" had to deal with the "in sickness and in health" part. I feel that I am not able to fulfill his needs as his wife right now so I struggle alot with that. With my friendships, I also feel that I cant reciprocate much right now. I feel that I have been stripped down to very minimal version of myself. I feel like part of my struggle comes from the fact that with my job, I felt I had so much purpose. I was saving babies, I felt so much worth and so much that I was leading the life God planned for me and I was fulfilling His calling for me. Slowly over the past 6 months, i have lost alot of that self worth, value, and purpose. So when my wonderful friends offer to help me, I have a hard time even saying yes because i dont feel like I am worth them wasting their time and putting the energy into being my friend right now because i dont feel like I dont have alot of positivity to add to the friendship. I apologize for going so deep into this. I didnt expect it. I never really know what to expect when I start blogging these days. Please pray for me as I deal with all these emotions and feelings. I do want to say though that I am seeing a therapist as an outlet to be able to talk about these feelings.

Today I had a fairly decent day and was able to go to a baby shower for a girl that works in the NICU. I was very nervous walking up to the door and I just said a little prayer that it would be ok. I didnt know how I was going to be received after not seeing these wonderful girls in 6 months. Everyone seemed glad to see me and asked how I was doing. A few people seemed genuinely concerned and I was able to talk to more in depth which was nice. At times it was bittersweet when they would mention happenings at work and I felt a little out of the loop but that was minimal. We've had alot of girls at work have babies in the last year so there were several kids there ranging from over a year down to only a few months so it was fun to just watch all the kids. That made me happy.

Another joy that I have had the past couple weeks is we have some friends who had a baby back in August and they litterally live in the neighborhood across the street from ours. They are fellow UT fans and we have goten together with them several time to watch the games. Once I see that sweet baby boy, I usually hold him till they leave 4 or 5 hours later. I think the parents love getting a break for a few hours. He's still little and fairly light and so it doesnt hurt for me to carry him around. When sitting, I grab a pillow or something for support and I just hold him and love on him for hours. It give me so much joy and brings me so much happiness to just be around a baby, even a crying one. There is nothing better than having a baby lay on your chest and nuzzle up to your neck and have them fall asleep. Feeling that precious heartbeat and their breath rise and fall as they sleep is the best feeling. Can you tell that I want to be a mother more than anything? God is a great provider and not only has the baby given me joy but we have also been able to become better friends with a wonderful Christian couple.

This has turned into a long post and for that I apologize. Again, feelings come over me and somehow I have to vocalize them. Nighttime can sometime be hard for me. My poor husband is always exhausted so he sleeps soundly but I usually only sleep for an hour or so at a time because I often wake up because of pain. The silence and darkness leaves me no escape from my thoughts and feelings. My prayer tonight is that I can become more excepting of help and more willing to reach out to some amazing people who have offered their help. I want to be able to call these great people and say "hey, i'm having a hard day and could use a friend." Right now, that is so hard and painful for me to do because of the guilt I deal with. I pray that God can take that guilt and replace it with feelings of worthiness and self value. I also want to be a better friend, wife, daughter, and sister to those that love me and have helped me through this and somehow, someway be able to reciprocate to these amazing people my love, appreciation, and gratitude. These are my prayers.

Thanks for reading.

2 months post op...good new bad news

So it has now been 2 months since I have had my surgery and the last month has been a roller coaster. The bad news is I am still having pain which is very frustrating. I never know if I am going to wake up and feel good, ok, or horrible. I had another CT scan, this time with contrast solution which shows the nerves in more detail. While I havent heard the official results from my doctor, my physical therapist told me the report didnt say that anything specific was wrong which basically means that everything with my surgery looks good. While that is good news, its also discouraging to not know where the pain is coming from. I've been waiting for a couple weeks now to get in with another pain clinic in nashville and I'm still doing physical therapy 2 days a week.
On September 29, I will have officially been gone from work for 6 months....a milestone I never thought possible I would reach. At vanderbilt, if you have been on leave for 6 months, you are terminated and therefore loose your benefits. For months I have been so fearful of this. Well the good news is that i found out that if i qualify for long term disability (which there should be no reason why I wouldnt) then I am not terminated and I will keep my health benefits. This is an answer to prayer. While Harrison and I would be ok on his income, its helpful to be getting part of my income from my disability.
Harrison and my family continue to be my rock during all this. I dont know what I would do or where I would be without them. Thanks for reading and your continued support and prayers.