Wow, I have been away a long time! My last post was last year… Guess that’s what happens when you’re depressed and in pain. You just do what you have to do to get by and drop out from the world.
Good news though! I finally found the right series of doctors who referred me to the right doctors who referred me to the right surgeon who knew what it was that was slowly killing my life. YEAH!!! It is called Acute Cutaneous Nerve Entrapment Syndrome (ACNES) and in addition to being horrible and miserable and every bad adjective you can think of, it’s also rather rare – which is why it was so hard to do anything but feed narcotics to it.
I had surgery on 5/23 in Johns Hopkins, and my surgeon found that my nerve bundle was adhered to the abdominal wall and mired in scar tissue. No wonder it was so painful! My surgeon made me feel so peaceful the very first time I met him. Just a wave of hope, peace and positive emotion swept through me as soon as I shook his hand. I’m starting to feel better from the surgery – even with a 6+ inch scar in my abdomen! So far, the chronic pain hasn’t come back although I do feel kind of burning/numbness where I thought I’d only feel numbness. I think (pray) that will pass.
So, I’m starting to come out of the darkness. My despair is lifting and I’m so grateful to God for sending me in the right directions and not letting me give up.
Summer’s over and I missed it… But, there is reason to hope!
Because of pain, vertigo, trying new medications, having the Meniere’s disease flare back up and being mostly bedridden, and because I’m too dizzy to do the stairs to my office, and too unstable to get out to do photo excursions or day trips, my summer was taken.
The latest new medication is for nerve pain. Its to target the pain from the nerve trapped in my abdominal wall that’s causing all my pain. And its brutal. The side effects I mean. They are awful. But, I’m giving the medicine a few more months to get used to the side effects. The medicine is WORKING!! The pain is lessening!!! Its amazing! I’d get up and do stuff if I was sure I wouldn’t pass out or fall over from vertigo LOL
So, between all these changes, I’ve missed the entire summer. I’ve hardly taken a single picture and I think I’ve been on the motorcycle three times.
Oh yeah, and my kitchen is still looks like a bomb went off in it… and won’t be finished until pretty much the end of October… Yup, feeling pretty bummed.
Yesterday I started on the two new prescriptions for pain relief my doctors (in Pittsburgh, PA) spoke about. The pain medicine infused ointment compounded by the pharmacy there.
Perhaps yesterday wasn’t the day to start them though to give a fair trial. Yesterday started at 3:59am when I woke up nearly screaming from pain and could not get back to sleep. Until later that is, ended up spending the entire day in bed from it. Watching tv, reading, studying, and watching Michael hang new blackout curtains in the bedroom (which are really pretty by the way lol).
The ointments came about 10:30 wth the mail, and when I applied them the first time, I didn’t feel much different. But, I think there was just enough to relax the pain long enough for me to fall asleep again. When I woke up a couple hours later I was still hurting but it was less. I was still so exhausted, I ended up sleeping off and on the rest of the day. I applied them four times yesterday and overall, I think it was better.
One ointment is a magnesium/gabapentin and the other is lidocaine. Other than a slightly sticky feeling left over on the area, they aren’t bad. No odor, and they didn’t cause a stinging feeling. I wished my own pain reducing concoctions had worked but they weren’t strong enough. I really hope they work!
Its my first experience with gabapentin and I wouldn’t have thought that it could be delivered in this method. My pain clinic local to me never suggested it, and when we asked them why not they were defensive. I think its time to try and find another pain clinic that’s local (reasonably so anyway) and see if they can help me more effectively. A doctor shouldn’t be defensive when you ask them questions. I followup with the Pittsburgh clinic in about a month.
Wish me luck!
She wakes at 1:30am and writhes, clutching her abdomen. I think, “Yeah! I did it again!” Gotcha!!
Her good morning cuddle with her hubby was going very well until I interrupted her, causing that cool sound she makes when I visit, and bonus! She’s gritting her teeth again. Yeah! Another score! Gotcha!
She’s feeling positive today… what can I do to change that? Oh wait, I know, I’ll derail her optimism with my special gift. Oh goodie, she’s crying…. Gotcha!!
She’s been trying for hours to find a comfortable position and relax. Nope, that’s not gonna happen! Gotcha!
Her stress level is so high her shoulders are up around her ears. Yeah!!! I’m so good at this!
She has so many things to do – all in an attempt to forget I exist… not that I’ll let that happen! Gotcha!
Hmmm, she thinks she’s going out with friends this evening…. “Not if I can help it!” I think with an evil smile. Time to turn it on! Now she’s taking medicine and trying to get rid of me. Ha! Gotcha!
She may smile at everyone and say “I’m fine, thank you,” but I know the truth. I make her miserable. Gotcha!
She’s had two very painful procedures, an exploratory surgery and more doctor’s visits than she can count and I’m still here. After four years, I know she’s beginning to think I’ll never go away. Yeah!!! Gotcha!
There is nothing better than that special moment when she’s at 9.9 on the scale and nothing is helping. This is where I shine like the star I am. I live for those times when she’s so scared and feels so hopeless… Double Gotcha!
Who am I?
I am Kathy’s chronic pain.
Good morning on this beautiful bright, crisp and clear day! Such a glorious day! Every window in the house is wide open and all the wonderful scents from outdoors are coming in and the breeze through the trees sounds so amazing!
I was out early this morning plucking broad-leaf plantain and lavender (as well as trimming chives and pulling yarrow out from where it doesn’t belong!) and as I was immersed in nature I had so many random thoughts running rampant through my head. What is it about early mornings that bring on a peaceful calm and formerly hurtful thoughts don’t have the power to cause you pain at that moment. I cherish those times! AND, bonus! I’m not dizzy this morning! So here’s some of those random thoughts:
Random Thought #1: I woke up thinking about plantain and lavender and decided to start an herbal oil infusion for a healing salve and using fresh herbs when you have them is best. While I was picking I thought back to recent comments by people that have hurt. On Mother’s day my daughter posted a blog about how Mother’s Day is for children and how she hated the day growing up. She talked about how she could never be sure I’d received the gifts or cards she sent – I never got a gift, but I di
d get a sum total of three cards. She talked about how she was stuck in the middle and she’s right, she was, and again she’s right by saying that’s no place for a child to be. I sure wish she would remember who placed her in the middle – it wasn’t me. So while she was denied a relationship with me, I was also denied a relationship with her. So… it was a lose – lose situation for her, her brother, and for me.
Like I said, I was hurt she would write those things, until I realized while I was out picking herbs this morning that she has every right to feel this way. And, that she’s not ready to accept the truth. That’s ok. I love her, and even if she never accepts the truth, I’ll still love her. You see… no one can take that away from me. So, as soon as I thought that, my resentment and hurt just melted away and it was such a lifting experience! So, Happy Mother’s Day my darling Daughter…
Random Thought #2: I’m so glad I decided to start Hilltop House Bed & Breakfast! I can’t tell you how fun its been to meet people and serve people. This morning while I was picking herbs I kept thinking about how to make the experience better for guests, how to improve upon the rooms. What is the image I want to portray with what I’m doing? And, what improvements I’ll make first when our Home Improvement Savings Account has enough to begin. You see, that’s where all the room rental funds are going. Straight into an account so we can make improvements to the house without financing them (I really like the idea of not financing our renovations!!). One of the first things I think I want to do is to replace the flooring from the living room, straight through to the kitchen. Make it all one kind, and no transitions. I would love a hardwood floor throughout. I think that would be stunning. So I’m busy looking at pictures, and every time I go to the hardware store I’m looking at flooring – when I’m not looking at plants or tools LOL! Having the time of my life and grateful to Michael that he doesn’t mind me doing this. He never minds whatever I want to try as long as it makes me happy – which I can tell you NEVER happened before I met him. Truly blessed that God arranged it so we would meet.
Random Thought #3: I developed an allergy to the adhesive on the TENS pads I was using and I’m back on paid medication until that clears up. Meanwhile I’m seeking out hypoallergenic pads (the snap kind) so if you know of any – please let me know! I really miss my TENS! I started out with the Icy Hot Smart Relief unit that we got at Walmart and loved it so much that Michael brought a Magic Pulse Ultra Massage TENS unit home from a trip he was on. I’m so impressed with the effectiveness of it. We went on a quick vacation to upstate New York and I used my TENS while fishing, hiking, jolting around in the truck on four wheel drive roads, and running up and down stairs that are so tall and steep you could almost get a nosebleed. And not once did I take a pain pill! That was HUGE, and completely life altering. I can now foresee a life ahead of me. That having chronic pain is not going to be a prison anymore. For the first time in over three years, I was almost pain free. Last year on this same vacation I could hardly function without pain medication – just trying to go on short hikes was excruciating – NOT ANY MORE!!
Random Thought #4: Why is it that every time you want to post about how fabulous the weather is, it changes to rainy just at that time? LOL Oh well, it this keeps up we won’t have to water the garden today.
Have a great day everyone!