Or needle in the spine – whatever – either way it hurts! So the second caudal epidural was two weeks ago today. I did get some pain relief from this one – just not as much as the first injection. Also, it seems that the injection site right above my tail bone hurt for a much longer time. Maybe it was because the two injections were so close to one another…. who knows – I only play a doctor on tv.
I went to see my neurologist who was a bit disappointed that I did not get more pain relief – as was I – especially for the $200 co-pay. He took the time, sat and listened to how my pain effects my life and the triggers that bring it on. When I told he about my current employment status he seemed to think this may help narrow down some of symptoms. Maybe even get more relief since I am not stressed out and able to lay down when needed. We shall see about that….
I got one of the meds doubled to see if that helps more and I am on my own for three months! He made sure to tell me I can always call – but we are both hopeful things are going to be better – FINALLY! It still hurts but it isn’t as bad – and I will take what I can get! Endometrisos is still a monkey on my back – but at least he is not as big and and a bit cuter now!
Today marks the one year anniversary of my hysterectomy. I am not sure how I feel about it really. It was just a day that I lost pieces of me. They may have been organs that were becoming dead tissue but they were still part of me. I am lucky that my “girlie bit” organs were the only organs I lost that day. The endometriosis had started to more to my kidneys and was all the way down covering my entire pelvic floor.
Besides the organs and other tissues they have removed from me in the last 1-1/2 years, I have realized that I have lost other pieces of me along the way.
I have lost the ability to really concentrate on knitting and have only completed a handful or projects.
I have lost my desire to get lost in a book, mainly because I am so tired by the time I pick one up that I fall asleep.
I have lost the ability to visit my parents, only 3 hours away, because I can not sit in a car that long.
I have lost the time going and doing and seeing with my husband because the pain was too intense.
I have most certainly lost friends because I can not go and “hang out” like I used to and they stopped calling to see how I was.
And sadly, I have lost real pieces of me – my personality – myself.
I am finally beginning to realize that I may not ever be without pain. It is hard to understand, accept and move on with life but that is what I am doing.
I have been through two (not so fun & expensive) caudal epidurals. They seem to help knock the pain down. I will take what I can get.
I just finished a knitting project – the first in months! I have also signed up for a knitting class that starts this weekend. I am really excited and looking forward to it.
I got a bike that I have gone on short bike rides with my husband. It is nice to be outside pedalling around like kids in the graveyard near our house.
I have not yet been to see my parents – but I am hoping to for the holidays *fingers crossed*
I have found the friends that are truly caring. They have been the ones that have checked and visited and called – and that is worth so much to me.
I am beginning to learn more about the person I am becoming from all of this. I have certainly been changed by all of this.
I may have lost so many pieces of me but I thinking I am starting to take some of the pieces back – and put together and beginning to see my puzzle of me.
I found the perfect used bike this weekend, actually, my husband found it. I was able to pick it up during lunch yesterday and I was so excited! Every so often, I would stroll over to look out the window to see it all shiny in the sunshine hooked to the back of my car (don’t tell my boss).
I was going for a bike ride! I kept thinking how THIS IS IT! This is me starting to take my body back. This is me getting in shape and shedding some of my 30 lbs I “found” this year. This is me getting to spend time with my husband doing something he enjoys doing. This is me taking my life back from endometriosis!
As the day went on my discomfort turned for the worse. The longer I worked, the more my pain increased. It became clear that my “this is it” bike ride was not going to happen. It’s ok – I have to listen to my body and all that. I was disappointed but all the pain distracted me from it.
I am happy to say that I got my “this is it” bike ride this evening. I went for a 3/4 mile bike ride with my husband. We went just down the hill to a large grave yard by our house. We figured this would allow me to get used to this bike’s gears, adjust the seat, things along that line.
It immediately become clear why this ride was off public roads. The “this is it” ride quickly turned into: this girl has no balance, this girl has issues steering, this girl can not talk and stay on the trail and this girl gets distracted easily and turns towards where she is looking. Lastly, this girl still has endometriosis and can only do what my body will allow.
My bike ride did not turn out how I wanted, but it did happened. And it will happen again tomorrow and every other day I can climb onto that bike and peddle!
I may have to live with endo but I will take my life back.
Ten years ago, I was getting ready to go to work. I was running late for some reason that is lost to the years. As I was walking toward the tv to turn it off, Good Morning American was showing a tight, live shot of a building smoking. In the rushed minutes I stopped in listened. They were reporting that it was a small, most likely Cessna-type plane, had hit the North Trade Tower.
I grabbed my purse, and went to work. The car ride was any other drive to work. Thoughts and talks of things that have become completely irrelevant. The news story I had turned off in a rush was already gone from my mind.
As I walked to my desk and started to settle there was a lot if conversation. Rushed words, comings and goings. And then someone said:
“Another plane hit the other tower, this is an attack”
I didn’t know what to think. An attack? On our soil? By planes? I was lost, as were the rest of us.
What happened next I do not have to recount. It happened to all of us. Shock. Fear. Outrage.
That day, in the frightened calls from family and the shared reaction from my coworkers, a thought that I keep hearing in my mind. This is our Pearl Harbor. This is history. I have to watch. I have see. I have to know. I have to remember.
10 year later, I remember and I will never forget.
It’s Three for Thursday time! I missed last Thursday because I was so nervous about by epidural! So I thought I would highlight the happy since that procedure.
#1 – I spent the day after the procedure knitting – SITTING and knitting – for hours! Not only was I sitting upright without massive, constant pain but I could actually concentrate on knitting, it was wonderful! I am actually optimistic enough to sign up for a knitting class at the end of the month.
#2 – Out of 3 work days, I have had 2 very good, low pain days at the office. The is just amazing to me! I am hoping for this to be a continual trend.
#3 – Since the epidural, I have not once had watery eyes due to pain. Instead, I have had several occasions of leaky eyes due to realizing that I am NOT in agonizing pain.
I am happy, thankful and most importantly – hopeful. So happy to have some hope for a change… I am just about ready to kick up my heals, just about…
Caudal Epidural +4
Struggling with remaining hopeful. Today was the first day back to work. By the time I left the office after about 10 hours at the desk I was hurting, a lot. I came home and got horizontal for a bit and it really helped the pain ease to a point to tolerable.
While I have not been pain free this weekend, I have been much more comfortable without having to concentrate on ‘not hurting’. It’s disheartening really…
But I will not dwell on that or the pain (damn it). Tomorrow is a new day. Look to the bright side blah, blah, blah.
I will rest tonight and feel better in the morning. I have to – I have no choice left. AND it can take up to 2 weeks for the steroids to work. They will work. They have to work (damn it).
I still have a little can can left in me…
Call the fire department because I am scorching the sheets!
In all my rush to get ready for my epidural in four days, I forgot to get one of my prescriptions – an important one. The one that keeps the “mean, hot times “anyway”.
At one point I was so hot and sweaty, I took my temperature – I just knew I was going to blow the end of the thermometer. It was 97.2.
It can’t last forever, right?