One day...

I keep hoping that one day I will be without pain. Without the need for Advil, without the frustrations with the medical community and from my pain, and without the tears. Yesterday I had a pretty decent day...without any tears, with very little pain, and was able to do stuff like laundry, washing dishes, sweeping the floors, on top of schooling and making French Onion Soup for dinner. Today is another story...

Today I'm dealing with the same back pain and tailbone pain since my surgery. I made Celery Seed Bread in prep for dinner tonight, did 2 loads of laundry (one still needs to be folded up yet), washed dishes in the sink, and educated the children on math, history, and reading so far today. I keep hoping that one day doing something as simple as what I have done so far today doesn't cause me the amount of pain that I am in. Today isn't one of those days however...today I am dealing with the pain praying that one day I won't have it anymore. Until then, I'm educating myself on pelvic floor spasm and pelvic floor dysfunction

First bill today from my surgery came in today...

and it's from the hospital.



It's for $18,981.50



Yup I know how to do it big however I think with my last surgery the hospital bill was over $30,000.

Glad we have insurance right now

Sleep?? Who Needs That????

Yawn



I barely slept last night. I think I got roughly 3 hours from the way I was feeling when I woke up to Jeff's alarm clock going off at 5 something this morning. I laid in bed with my eyes closed listening to my music aimed at giving me sleep. I'm not sure how long I was in bed but at 6:20 I was crying....God I really need to get a couple more hours of good solid continuous sleep.

So much for my pleas and prayers to the Almighty. I decide to get ready for the day with my shower since the world wasn't awake in the home. I'm thinking I'm grateful for having my dad coming by at 9...I just need to make it until then and I'll take a nap.

At 9 my dad arrives and I give him a list of instructions...Seong Tae is sleeping in my bed due to a tummy ache, girls have had breakfast, dogs need to go out at 10, etc. Shortly after, I head upstairs for a 2 hour much needed nap after a sleepless night of discomfort and hot flashes.

I'm on Vivelle Dot .1 mg. I haven't had a hot flash until last night. Most of the night was one big huge hot flash. I'm not happy. I fought so long to keep my organs so that I could go into menopause naturally not surgically. I don't wish endometriosis on anybody. My maternal grandmother probably had it, my mom has it and I have it as well. I'm glad to break this cycle of pain, anguish, frustrations, and more. I'm glad that I found a caring surgeon who truly cares about the women that he sees. I'm glad that his office staff is so caring as well.

Right now I'm hoping that I can sleep through the night tonight. I need to have some good quality sleep to get me through the night so that my body can heal.

My recent surgery in Atlanta

I have been dealing with leg pain for awhile now along with low back pain from my endometriosis. I have done chiropractic care, physical therapy, and yoga with little result. My dad helped me out by taking me to my PT appointments and then watching the children twice a week for 3 months. I think that I have lost friends due to the pain because I couldn't drive to see them and was focused on trying to get me better. I had been in tears due to the constant pain I was in some days.

I gathered up my records and sent them to Atlanta to Dr. Albee at the CEC again after having my 7 hour surgery done by him in 2008. He is an angel. He did my 4th surgery on August 3rd lasting a few hours. He excised the endo on my diaphragm, took out the remaining portion of my right ovary due to the hemorrhagic cyst on it, and lysed the few adhesions that I had. Dr. Albee said that I was at Stage 2 (see http://www.health.am/images/uploads-gyneco/21-3.php for some details on the staging of endo).

I am quite sore. It hurts to take a deep breath in at times. My right side hurts to the touch. I haven't been able to sleep through the night yet due to my pain. I have incisional pain at my belly button and it isn't due to an infection.

Due to the surgical menopause that I find myself now in, I'm on estrogen patches. I cry over the loss of my organs. I cry due to the pain I'm in. I cry that I had to fight with my obgyn's office in order for me to be seen post op--they didn't want to see me as the surgeon does the post op visit and they didn't do the surgery but once I brought up Dr. Albee's name, the name of his group practice, and my willingness to give the nurse his phone #, I got my appointment for August 26th. I cry because of the possible loss of friends again this damn disease might have caused.

I am so so so thankful that I have a supportive husband who used up most of his vacation this year on me, family members who care, and friends who have stuck by me.

Gotta go back to resting. Jeff heads back to work tomorrow morning and I'm certainly not ready for that just yet.

Tailbone pain

Okay I know that there is a medical term for it but I have been having tailbone pain that is unrelenting. I do my PT exercises and it doesn't help. I rest it and that doesn't help. I do yoga and that helps a small percentage of the time. It's worse as the day progresses. I'm fighting with everything that I can but the fight has been going on so long and it's tiring at times.

I'm waiting for 2 doctors to send me their notes from our visits and then I need to write up a narrative and send everything I have off to Dr. Albee. I'm scared to have another surgery but I know that it's needed. I really dislike the preps for it and how they make me feel so weak and with a headache.

~Jen

Doctors and More Doctors

Well I'm trying not to get too aggravated with the medical community but it's difficult. I have back pain that 3 months' of PT going twice a week didn't help. I also noticed last year that I have right leg pain that is cyclical. It occurs every three weeks...sound like something we women get each month right?? Try telling that to my doctors and feeling pretty well rejected.

My physical therapist suggested a spinal specialist and I saw him in late December. He doesn't think that my back pain is coming from my back at all. Of course that begs the question "Where is the pain coming from?". He suggested seeing another doctor who loves challenging cases and I'm definitely one of those. This other doctor is a physical medicine and rehabilitation doctor. Okay I'm game to see what he has to say.

My primary care doctor has basically dropped me. My obgyn doesn't want to deal with me as the back and leg pain aren't obgyn related. My physical therapist let me go but it's with the understanding that I can come back if I find it necessary to do so.

I've been screaming for help and most of the medical community isn't willing to listen. My primary care doc has been alright but not the greatest...my obgyn is not the doc that I want but I can't have her as she is retired and my other choice is too far away in Atlanta.

I had a nerve test earlier this week to check to see if the nerves are causing any problems for me. It's called a upper extremity and lower extremity SEP (somatosensory evoked potential) I don't want to go through that again it hurt my right hand and my feet for 2 days. I had trouble sleeping that first night. My hand still is having trouble and my legs feel like I've pulled a few muscles in it. The pain from it drove me nuts!!! I won't get the results from it for at least 5-10 days so you'll have to wait.

I also was advised to find a rheumatologist to look at my hands as they are red. So I'm on the hunt for a rheumatologist now.

My guess, of course, is that it's endo related. I'm not thrilled to be speculating that it's endo since that means a trip to Atlanta for surgery. But I already know who I want surgery with...

~Jen