I am in pain. The left side of my body seems to be leading the charge this weekend which is odd because normally I have more problems with the right side of my body, but I guess the left side was just feeling left out. I know from how the pain feels that I’ve pulled a muscle somewhere which makes sense since I just had two major spinal surgeries and I’ve had to be using my arm muscles more. Depending on how I move my left arm I get these sharp shooting pains, now I have figured out some positions NOT to put my arm in so I have been avoiding those-obviously, but I am still finding new ones that I didn’t realize were bad ones until I put my body in them and then I am quickly notified those are bad..VERY BAD. So last night sleeping was not fun.
I laid down, but I could tell my hips were not in the right position so my wife got a towel for me to put between my ankles to fix my hips and then I actually was able to fall asleep. It’s amazing sometimes how just a minor adjustment will make a difference between hours of tossing and turning and falling to sleep in less than 10 minutes. Since I’ve been dealing with all this crap for so long I’ve learned a trick or two, and my physical therapist taught me a trick or two to help me get in the right sleeping positions by using rolled up towels, pillows, etc.
The other issue that I had last night was I was running my stimulator rather high and I got shooting nerve pain in my most common spot. I have this “sweet spot” for lack of a better term when it comes to nerve pain. I get the worse nerve pain in this one spot right above my right knee in my numb thigh. Yes I just said my thigh is numb, but I get the sharpest nerve pain in that one spot. The issue is once I get the nerve pain there, I tend to then get nerve pain in other places. It not uncommon to see me hitting that place on my thigh with my hand to try and dull the nerve pain because its HURTS. And it’s not like it hurts and goes away oh no it keeps going and it can go for a good hour. Not that I sit and hit my leg for an hour, but I’ll massage that area, I’ll do anything to try and get my mind off the nerve pain, but last night when I could feel the nerve pain THROUGH the stimulator I looked at my wife and said to her “WELL THAT’S NOT FAIR!!!!” She looked at me with a very confused look and asked me what I was referring to, and I responded that I could feel the nerve pain through the stimulator.
I actually was awakened last night by the nerve pain in my leg which wasn’t fair either but at this point I’m used to. I’ve gotten used to that the nerve pain is part of my life and I can’t get away from it, it’s part of me, and will continue to be part of me until I die. They still can’t figure out why some people get random nerve pain why the brain gets overloaded and then sends out pain signals. Nothing that I had done should have caused the pain I was in, I was sitting on the couch with my legs up, I hadn’t walked far, I hadn’t climbed stairs or done anything else to make my body send me all those nasty pain signals yesterday. If I could raise the white flag I would, but you can’t. If I could take a steak knife and just cut out that part that causes the pain I would. Yes I know I can’t it’s not that easy! I also know that if I could just get my surgeon to fix that he would have done that already. In the world I live in you make peace that some days you are going to have excruciating nerve pain and you rejoice the days you don’t!
Obviously my back did not get the memo that I only accept pain from my low back! I mean seriously! I can deal with low back pain (and have dealt with low back pain for over 2 years now) this upper back pain NEEDS TO GO! It’s funny (and not in the ha ha sense) how you can deal with one type and you get so used to it that it becomes second nature but as soon as that pain moves a few inches its like the grim reaper has stepped in and all hell is starting to break loose!
Now I’m sure part of the upper back pain is that with the surgery I have 2 incisions in that area that start just about between my shoulder blades and go down and they are roughly about 2-3 inches long, and b with my low back being out of commission again due to the spinal fusion I am be very careful to push up with my arms, and I’m sure my upper back is saying I’M TIRED!! You are abusing me again!! Go to the gym and workout next time! (And yes it’s okay if you laughed)
When you are so used to being in one type of pain it really is amazing how when another type of pain creeps in you have very little tolerance for it. It’s like okay if we are going to have pain I want this type that’s it alright meeting adjourned! If only it worked that way! Seriously! I would be a happier camper if I could just tell my body how to work and then be on my merry way, I think anyone with any chronic condition is right there with me on that statement.
So today I am going to pull out the heating pad for my upper back and rest and play Candy Crush because I can and relax and rest because that’s the real memo my back is sending me REST. I dislike that four letter work see not all four letter words are cuss words, I can think of a lot of four letter words that people dislike DIET, REST, WORK…,see I bet a couple popped into your head too. The best thing I can do is just take it easy even though this morning I got a million ideas, but I think for the sake of my back I will put the list aside and just rest.
Yesterday I went and got my spinal cord stimulator programmed for the first time since my spinal fusion and spinal cord stimulator implant 2 weeks ago. The day of surgery St. Jude Medical gave me 1 program for the stimulator that I had been using.
Now I have 5 programs to choose from which is AWESOME. I have choices. I am still getting used to the stimulator. When I am in certain positions the stimulator the pulses are stronger which I am trying to get used to, but each day it gets easier. I will say as far as pain I am feeling better. I am really happy that I did the surgery, I am still stiff and sore. I walk like I am stiff and sore, the wet weather outside is not helping the stiff and sore feeling. I have dealt with the pain for so long that to have some relief from the constant pain is a blessing.
So yesterday the rep also showed me how to charge the battery in my hip. So I am sitting charging the battery and watching tv. It’s raining buckets out there, if I was feeling better I would finish building the boat in my non-existent basement! They are concerned about flash flooding, and coastal flooding, and I can see why, the meteorologist are talking about 10+” of rain which is a lot of rain. So I’m sitting on my charger, watching the rain, watching TV and just enjoying life.
Living with chronic pain is hard, I’ll be the first to admit that. You wake up, you are tired. You go to bed you are exhausted. You fight everyday to smile and do the simplest of task. I made the choice to try and make the best of everyday. I laugh and joke and try to find joy in everything. I have days where I want to stay in bed and cry. I’ve had plenty of tears cried into my pillow. Today I am glad I had this surgery. I will repeat over and over again that I did not come to this decision lightly, I thought about and researched this surgery for over a year before I had it done. It’s a long process and a lot of hoops to jump through before you can proceed.
That being said there is great news for people like me who suffer from fibromyalgia, it is FINALLY getting its own diagnostic code! Which means it does exist here is an article talking about it. This is HUGE news. I have several codes in my files where the doctors have had to use general codes for different issues and that makes it harder for me and other doctors.
So the East Coast is getting a lot of rain, like A LOT. There is a hurricane forming down by the Bahamas and depending on the path depends on how much rain we will get. When it rains my arthritis kicks into full gear, my asthma kicks into full gear, my fibromyalgia decides to get a piece of the action, I mean why not…and then of course my back pain increases as well. So today I am not in a good place pain wise, and I’m uber sleepy! I’m sure I’ll take a nap..maybe two today because I’m just sleepy and sore and while I will try to be up and moving because it is important to keep those joints moving, I will also rest because today I am 2 weeks post op.
Tuesday I am going to see my surgeon for my 1st post operation visit so he can look at the incisions, he can evaluate how I am doing, etc. I’m sure he’ll be happy with everything. Tomorrow I get the stimulator reprogrammed which I am VERY HAPPY about. Last night the wife and I were discussing how high it goes and I go I dunno I turned it up to 12 and that was too much for me, so I turned it back to 7 where I like to keep it. She goes don’t want you bouncing across the floors!
One of my wife’s friends has now nicknamed me Energizer Jenn because I have a battery implanted in me. Which if my normally upbeat hyper attitude wasn’t enough to have a battery implanted is just a great addition to the story! I mean now I just need a base drum that weighs less than 5lbs that I can walk around with! HAHAHA
So I’ve decided that my recovery has been a lot better because of all the things I learned LAST year with my spinal surgery. I learned how to get in bed, out of bed, how to get dressed, etc. I made mistakes and I learned from those mistakes. So this year I have been up and moving around because moving is really important after surgery especially when you have asthma. I am at a higher risk for pneumonia so I have been up and moving.
I have been resting a lot, which has been really hard for me. I normally am a go go GO type person. I like to be running around and have lots of different things going at all times, but I know that the only way I am going to have a successful surgery is to slow down and rest. I sleep when my body tells me to and realize that it’s okay to slow down.
I called and made an appt with my neurologist because I am getting dizzy. Last night during the lunar eclipse I was looking up which is never good and I was walking and swerving all over the yard. Jenna had to hold my hand to make sure I didn’t fall in the dark.
I also called to make an appt to have my stimulator programmed. My stimulator works, but with the inflammation and scar tissue the stimulator program isn’t quite right now. So we need to program it again. They had told me before the surgery that I would have to have it programmed and re-programmed several times in the first couple of months because of scar tissue and just getting used to it. I’m good with that, I understand that. I’m just so happy that I finally HAVE IT.
The rash on my back doesn’t itch now and it seems to be going back to flesh color. The steri strips are starting to fall off. I’m not pulling them off, but since I am not covering them, they are falling them off faster than they would if I was still covering them. The incisions look good.
So while I might only be moving at the speed of a tortoise I’m moving and I’m good with that.
I think I’m starting to get old enough that commercials are mimicking my life now and I don’t like it! Hahahah Last night I was getting ready for bed and my back was hurting so I was trying to decide if I was going to take a pain pill or if I wanted to try my stimulator on a bit higher setting to see if that would work better…..
Well I decided to try the stimulator on a bit higher setting to see if that would work better for me because I am really trying to get away from the pain pills because I know that once this prescription is gone they aren’t going to give me a refill. The CDC just put out new recommendations for patients with Fibromyalgia and pain meds. So I know they would be reluctant to prescribe me anything now, they refused to prescribe me pain pills before all this! When I sprained my knee the doctor wouldn’t write me a script for pain pills because of all this back mess, but I digress.
Anyhow…so I turn up my stimulator and I got a little happy apparently because it was so strong I got weak in the knees! So I had a flashback to those commercials for the life alert where the old people would fall and go “I’ve fallen and I can’t get up!” expect I would say “I’m vibrating and I can’t get up!” which I realize how dirty that would sound, but eh it’s me! So then I get to laughing because I realize how dirty that would sound to someone who didn’t know about the spinal cord stimulator and how being laid out on the bedroom floor because I had turned the system up too high was so ridiculous I almost didn’t get it turned down in time before I fell on the floor. I did manage to lay down and call wifey because she deserved a good laugh. So I call her and I tell her about what just happened and she started laughing and I’m pretty sure she is shaking her head, but of course I can’t see her. She laughs and tells me to go to sleep.
Through all the pain and the doctors visits and even hospital stays we really do try to laugh. We try to laugh about anything and everything we can because I live with chronic pain and actually so does my wife. We try and find the joy in probably the most mundane things, but when we can find the joke/joy we laugh. I think I have learned over the last two years that learning to laugh and find the joy in life is what helps the most so if turning my stimulator up to high and then laughing about falling because I’m vibrating too much makes us laugh then I’ll make jokes about vibrating too much.
So I really want to itch the rash on my back, but we all know that is not a good thing to do. So I called my surgeon this morning and explained the situation to the nurse. She said that she would send him a note, but he was in surgery today. So around noon a get the best call of the day, the surgeon has called in a prescription to hopefully STOP the itching!!! WHOOOOOOOO. Trust and believe this really was the best call all day long.
So my beautiful wife went to the pharmacy and got the steroid prescription for me and I have taken my first dose and I have to convince myself that I am no longer itchy because I have the prescription. Otherwise we are duct taping the oven mitts back on and those are really hard to type in!
Apparently Invisible Illness week is coming up. I really do think it is important to bring to light how many invisible illnesses people suffer from because education is important. Education is important because that’s how people learn about different symptoms, and sometimes people figure out what is wrong with them. I have known people to suffer for years and then they met someone and that person has an illness and similar symptoms and boom the person goes back to their medical team asks about that specific illness, has the appropriate tests run and we have a diagnosis.
It’s hard when you have invisible illnesses and chronic illnesses and no those are not the same thing. Those are two different things. I can have a chronic illness without it being invisible. I have to say when doctors first started saying I had fibromyalgia I didn’t know what to think. I didn’t know what to think because I was in pain all the time. I get random pains here and there and couldn’t describe them, or I wouldn’t remember them and at this point I can’t really remember not having random pains all over my body even though I know I have only been dealing with this crap for 2 years, I really don’t remember a time when I didn’t get random pains all over.
I try to stay goofy/upbeat because if I let the pain get in my way, and if I stewed in the fact that I can’t remember a time before the pain set in, I would be depressed. I would lay in bed with the covers over my head every day not wanting to get up. I would not want to do anything because of the pain because of the spasms because of how much my life is ruled by how much I cannot do. I stay goofy because I cannot focus on what I cannot do.