So, it seems I spend a lot of my time waiting for my meds to kick in to help elevate some of the pain. This morning I was up about an hour before my first dose of the day. It is almost like the pain from the endometriosis wants to make sure I am awake and feeling the pain before I can fight back.
It’s been at least a couple months since I have had some hope about being pain free or at least pain less. I was really hoping that Lyrica was going to be the answer, but it is only half of it. I am happy it has gotten rid of the majority of lightning nerve pain that shoots down my leg. Unfortunately, it has not anything for my original pain.
I am so excited to go to my first pain management appointment tomorrow morning to talk about nerve blocks. It is something I have hope in. It is hard to think I have to live with such pain and I am ready for something new.
I am ready for something to give me hope.
I am ready to do some more fighting!
There are just some phone calls you do not want to make – even if they will lead to good things for you… I have to make one of the calls tomorrow morning – first thing. Well, honestly, I should have made it call this morning. I. Just. Didn’t. Want. To. Seriously – it was not going to happen once the work day started this morning. I know I would not have the patience to get through the call(s).
Yesterday, I was in so much pain I was sitting at my desk holding back tears and trying to ignore my fuzzy vision. I knew I just had to get home to my meds and my heating pad and then I would find some relief. Unfortunately, the pain took quite awhile to abate. There was a point in time I thought I would have to call for a ride to the ER for something through an IV. Thankfully, the pain was knocked down a few notches and I could think. I knew what did this! I knew what caused the pain to go off the deep in….
Bending – bending is bad bad bad. I now really know this is a huge trigger for the pain to go through the roof. Great! this important information for my neurologist to know. This will help with adjustment of my meds and maybe something new to try! This was great! I just had to give the doctor’s office a call. CRAP – the doctor’s office – I HATE calling the doctor’s office – any doctor’s office after the last year I have been through.
I like nurses – I really do – they have helped me out of some really tight pain jams and I love them. I love what they have gone to school for – and what they do day in and day out. It is something I could never do. But it seems like all the nurses at my doctor’s offices are starting their very first day on the job with my phone call. It usually goes like this:
- (Initial call) “Hi! This is Susan I am still experiencing quite extensive pain, but I think I have found a trigger. Oh – I can’t get in to see Dr TooBusy until the day after the Second Coming? OK – I will take that appointment and leave a message for the nurse… ” patiently wait and sometimes get disconnected and have to call back and then BEEP! “Hi- this is Susan, date a birth blah, issue I am calling for, awesome revelation that I am calling to let you know about to see if it helps with my treatment. What can I do in the mean time since I am still experiencing quite pain? My # is blah. Thank you!”
- (Return call) Hi Susan – this is Nurse not sure what I am doing returning your call. What were you calling about? (ME = I repeat exactly what the message stated). NUSRE= Oh, well let me pull your file and give you a call back. (Keep in mind I have had 3 surgeries, several procedures and countless tests done over and over. I am sure my file needs its own room at this point).
- (2nd Return Call) Hi Susan – this is Nurse not sure what I am doing again. I pulled your file and see that you have endometriosis and neuropathy. Are you still taking the Lyrica and Tramadol? Ok, well, you still have pain? (Me= repeated what I said in first conversation that was repeated from the voice mail I left). NURSE = Oh, you are still in pain? Ok, let me talk to the doctor and call you back.
- (3rd Return Call – If I am lucky, the same day) Hi Susan – this is Nurse not sure what I am doing returning your voice mail. (ME = I explain we have already spoken twice and repeat for the 4th time that day what I am calling about). NURSE = Oh, that’s right! The doctor has already left for today. (It’s 3pm). I will have to call you in the morning – but in the meantime continue with your meds as normal.
- (4th Return Call – Close to afternoon the next day) Hi Susan – this is Nurse not sure what I am doing again – I spoke with the Dr and wants you to come in to see you and maybe more nerve tests. (ME= I explain when my appointment is). NURSE = Oh that is a long time from now, let me talk to the doct…. (phone being snatched)
- Susan – this is Doctor blah blah – can you come in tomorrow? Ok – see you then.
Can you see why I don’t want to make this call? I think they should give you Valium to gear up for when you have to call them.. It is like jumping through hoops of fire when you feel like shit to get some help. So, I can’t wait to call tomorrow morning! Thank God tomorrow is Three for Thursday!
Take 2 and call me in the morning!
I have been upgraded to 300mg/day Lyrica to help with the pain…
Lab work came back that I have low vitamin D3 and I now have a fancy supplement to help with bone strength and hopefully the pain…
I have done entirely too much physically that has caused too much pain…
And now feel as if I have had a spork downgrade… to plastic.
I can still fight endometriosis with my plastic spork – I will still fight.
Had a more enjoyable weekend than I was expecting. Since I have “made” it to the full dosage of the Lyrica (for neuropathy from endometriosis scaring) I have been a little, lets say – Off. And that is putting it nicely. Friday was a very difficult day to get through with being “off” and exhausted from lack of sleep. I immediately napped after my work day was done.
Saturday starting off with the norm and thought I was in for a day at home. Once my hubby got up I decided I was feeling up enough to venture out for coffee and bagels. During our fine dining we decided to go check out a local museum down town that we like to visit (and is FREE). They usually have a “visiting” exhibit and even if you have seen it – there is always a little something you come across that is “new to you”.
My new to me find was the old Florida citrus labels. I had walked through this room a handful of times – but on this day there was just something captivating about all the different labels on the front of museum backlit boxes. Today – they were bright and colorful and told me lots about the state of Florida’s citrus production history.
- Did you know they had a box press that would squeeze shut the over packed orange boxes? Apparently different groves would try to “out do” the other by overstuffing boxes. I got the see the nifty press they used – but never found an explanation why they did this.
- Did you know that German POWs were kept in Central Florida during World War II? Yep, they were – and they were also used to pick fruit in the citrus fields.
- Did you know that key lime trees are more of a bush and not a tree like other limes? You can also grew them easily on your patio and in the Florida Keys you can not “throw a stone with out hitting one”.
I learned this and a whole lot more. It was a load of fun to go through the museum with my husband and discover all the beautiful citrus labels and the Florida History with them. But my most important discovery on Saturday was not the labels – but how much this simple time spent with my husband means to me.
2010 is mainly a blur to me. Two surgeries and a startling, terrifying diagnosis and a whole bunch of pain and hospital bills. Endometriosis has taken a lot from me and my husband. It was nice to take a day back and look past the pain and enjoy just being and enjoy being with the man I love.
I suggest you go find your own citrus labels, find something wonderful that is “new to you”.
Comfort food fixes just about anything! I learned fairly quickly that living with endometriosis is tricky. There are good days and there can be really, really bad days. Today was in between the two.
I was switched from Neurontin to Lyrica at my recent visit to the neurologist. He believes that I have a form of neuropathy due to the scar tissue from the endo.
The switch has made for an uncomfortable weekend and the abundance of clouds and thunderstorms this afternoon did nothing for my motivation. I decided the only way to salvage Sunday was comfort food!
Below is our dinner; meatloaf and corn casserole (thanks Allie). It was super good and now it is time to curl up with the furry babies.