Tag Archives: phatom pain


Okay fess up who doesn’t like a good NAP? I mean I really think the Spanish have it right with siestas in the afternoon! Take a nap go back to work, you feel refreshed! As a child I stopped napping at 6 months which my poor Mom had to put up with, as an adult I take a nap about everyday now…I think I am making up for lost time…sorry Mom! My Mom really is a saint! She takes me to my appointments, helps with taking me to do odd errands like going to the bank, post office etc. When she jokes about that I am her full time job she’s not kidding!

I am really grateful for my Mom and how much help she has been these last couple of years with getting me to these appointments. I don’t know where I would be without her. It’s been nice to spend some extra time with her. Of course when we spend all this extra time it doesn’t feel like quality time because its always around medical appointments. I am seeing this doctor or that doctor, I’m getting this or that test run. So every once in awhile she and I will pick a day and just go out. We’ll spend some quality time together that is not around some medical appointment or procedure.

I know that my whole life is not going to be based around doctor visits and medical testing but right now that’s what it feels like and it’s exhausting! I have all these pills to take, all these blood draws and tests plus physical therapy. I’m always at this doctor or that’s office for some sort of check up. I have this test or that test coming up. My calendar is already filling up for December and we haven’t even hit September yet… life of anyone with a chronic illness!

Can we have a redo?

Sometimes you just need a redo, I mean the day you just need to climb back into bed and start over. You just want to climb back into bed pull up the covers and try again. That was the day I had today. I have done pretty good with the blood thinner shots, but today I must have had the angle wrong which considering that I can’t look down and I’m having to use the mirror to give myself the shot I think I’m doing pretty well. So I gave myself the shot but it hurt, then after the needle was out it hurt even more. So that was not pleasant. Mother Nature has been giving us temps in the middle to upper 90s with feels like temperatures over 100 degrees so it’s HOT outside.

So I’m pretty sure I am melting like I should have reached my melting point at some point today…and of course I remember that one summer I worked for that theme park and I would be outside in 115 degree weather..yeah that was fun…NOT! So then I decide that maybe I haven’t reached my melting point yet. But I decide to eat a popsicle to cool down just to be on the safe side! Not that I think I need an excuse to eat a popsicle because now that I am an adult I pretty much can eat one whenever I want and I have a valid excuse for eating one. It’s 6am and I’m eating a popsicle because it is orange and I decided to have frozen orange juice with my breakfast…yeah because I’m an adult! See how that works?

So then later in the day I was walking and my leg started to give out on me and I’m thinking to myself see this is the melting point my leg is giving out on me because it’s tired and it’s telling me that it’s giving up on holding up my body weight. It’s going to go on strike and it will not longer participate in fighting gravity on my behalf. I’m sorry body but you are just to heavy and gravity has won this battle…BAM! Body meet your new friend floor, floor meet body where you will be staying until further notice.

I used to watch all those commercials with the old people lying on the floor and they would say “I’ve fallen and I can’t get up” and you would think aww poor old people they are so fragile! How is it at 30-something years old I could be in one of those commercials? When did I become so fragile that I could be an actress in that commercial and lying on the floor telling the world I can’t get up and really mean it?

The issue would be the people watching at home would be like that chick is too young for this commercial! That can’t be right! Fire the casting director! These are supposed to be OLD people, she doesn’t even have grey hair! The issue is that I am clumsy enough for the commercial!

Pain medication

There was a really interesting discussion yesterday in one of my doctor’s offices between myself, another patient, the doctor and one of the techs, the topic at hand…opioid pain medication. So both the other patient and I have long histories of pain but neither of us are on opioid pain medications. I know that had I stayed on pain medications I probably would be addicted at this point. My first back surgery was September 2014 and my back still is not fused.

We talked about how we have created an epidemic because doctors in the past have been too quick to prescribe the opioid pain medications and not try other ways of pain management. There are other things to try for a lot of patients. Now there are patients who do need pain medication for longer term use, but those patients are few and far between. A lot of patients who are on opioid pain medication don’t need them for long term use.

I will ALSO say that just because a patient is on opioid pain medication does not make them an addict. There are plenty of patients who are under doctor’s care and they are taking the medication responsibly and there are no issues. I know patients who need the heavier pain medications and they have tried other methods of pain management to no avail.


I used to have this wicked (as in AWFUL) leg spasms. Then I had surgery and they got better, we were hoping the surgery would make them disappear. Part of the reason I don’t drive is because my legs spasm. I don’t want to risk hitting the gas or break due to a leg spasm. Well last night my legs had a mind of their own apparently! They were kicking ALL NIGHT LONG! At 6am they jerked so bad I lifted off the bed! I then raised the proverbial white flag and just got up. I couldn’t take it any longer. I think that is one of the things that drives me the most crazy.

It’s funny (not really in the haha sense) that the spasms is what gets me the most. The pain I have learned to deal with, the fact that I can’t drive right now I have learned to deal with, but the spasms makes me want to crawl the walls. I think its because they a) HURT it feels like something is crawling in the muscles deep until they spasm sometimes, not always and b) are unpredictable sometimes they spasm suddenly. They can be quick or long. Sometimes I shake, sometimes I jump, and sometimes its a combination. This morning was rather impressive I have to admit, the fact that it was so violent that both legs spasmed at the same time and I lifted OFF the bed, was impressive, I was not amused, but it was impressive.

I hope everything calms down today because I do not want to continue to have these massive spasms. I want my legs to behave but since the rest of me rarely behaves…I am often heard to say I solemnly swear I am up to no good.. I like to keep everyone on their toes! I think it makes people wonder what I am up to, and helps make seems more mysterious. Thin veil of mystery, woman in red, you know I try at least not to be too much of an open book but sometimes I just can’t help myself!

So hopefully we can get some of this stuff figured out, get the leg spasms to stop because I only have so many white flags I can raise and then I’m going to RUN OUT, and that would just be sad and I don’t want to be sad! I much prefer to LAUGH, laughter is the best medicine!


I have a lung infection. So that might be why my INR dropped this week, but of course there are a lot of variables with INR. So I go into the doctor’s office and I give the nurse all the symptoms and then the doctor walks in.

Doctor “How are you?”

Me “Oh I’ve been better. I came in today to borrow your stethoscope, your ears and your vast medical knowledge. You know I went to school to be a teacher not a doctor!.”

Doctor chuckles and shakes his head and points his hand to the table so I can jump up so he can listen to my heart.

So as you can see I have a really good relationship with my primary care doctor. I joke he laughs and shakes his head. He checked my sinuses, ears, nose and throat. Listened to my heart and lungs, checked how my scars looked on my back. I made a crack about that I bought 5 got one free. Well you know I like to keep it light. He asked about my oxygen stats when I told him I had felt light headed but my oxygen has been high. So the conclusion was LUNG INFECTION!! YAY….not so much, but not really all that surprising. I mean I’m asthmatic, I’ve already had pneumonia once this season, so we are going to do medicine and see if I get better. If I don’t feel better, I am to return, if I get worse go to the ER. So lots of fluids, rest I know the drill.

Ahh the joys of blood clots, asthma and chronic illness.

Dueling Pair

When you have nerve pain there are some nerve pains that are constants. Some are randoms, and some are just down right annoying…wait they are all annoying….So there is this one spot right above my right knee that we call Ole Faithful because it has NEVER GONE AWAY. Other nerve pain spots will come and go, but Ole Faithful is always there is bug the snot out of me! There would be plenty of times I would smack the area and people would just look at me and I would smile sweetly and go don’t worry my thigh is numb. Which of course then I would get puzzled looks because if my thigh is numb then why am I smacking it….Well that is a really good question that we haven’t quite figured out yet, have I mentioned I am a bit of an enigma? So I have this nerve pain patch that is right above my knee on the right thigh that is numb any other time. Yes the area is numb unless I am having painful and I mean PAINFUL nerve pain. So why there? I have plenty of other leg retail space available, but the nerves right there like to bug the snot out of me.

So on my thigh that is numb I will get the more horrible nerve pain. This morning I woke up with it…it’s going to be a long day. Oh yeah did I mention I am on blood thinners now and so any smacking/hitting/etc is out of the question now? Yeah…. so because with the blood thinners I could bruise easier, which doesn’t seem to be happening to me, but to most patients it does (remember I am an enigma…) I am not to smack my leg to get rid of the pain. So I took my nerve pain medicine like I do every morning (I take a second dose in the evenings), I put pain cream on my knees and a bit on the patch per the doctor’s instructions for days like today and I PRAY. I pray that it doesn’t drive me to insanity.

It’s rainy, yucky weather outside which means my asthma is acting up, my arthritis doesn’t want to play nice and my blood clot is reminding me it’s still around, BUT I have to go to the clinic to get my INR checked so I will be venturing out today. It will be a good day. I just have to remember to take things nice and slow. One thing I have learned through this whole ordeal is to take things slower. It’s okay to say slow down, its okay to walk slower, it’s okay to say I’ll catch up. I don’t have to push myself to the point of exhaustion, it’s about self care and the balance of life.

Pop, pop, pop….

Every time I get up you would think I had hidden bubble wrap in my pants. Seriously it sounds like bubble wrap going off in my jeans. You hear pop, pop, pop…no crackle just pops so we know its not from all the Rice Krispies I ate as a child, although that would be a good second guess! Over the summer I did have cortisone injections in both of my knees because the insurance company wanted me to try that. So I tried that. I had had a cortisone injection in my left knee ages ago and it didn’t work and surprise surprise it didn’t work this time either. I can tell you from the constant pop, pop, pop that the cortisone injection in my right knee has fully worn off hence the sound of bubble wrap every time I get up.

I think I would rather buy a large economy size roll of bubble wrap and just sit and pop it instead! I mean how peaceful and fun is it to pop each little bubble and then you see the stories of them creating bubble wrap that the bubbles don’t pop! What kind of madness is that?? I mean bubble wrap with unpoppable bubbles???!!!! Say NO!

I know that I have put extreme stress on my knees due to the excess weight, but I am working hard to lose the weight to help my knees and my back. I am eating healthy and once I am cleared for exercise I will start any exercise the doctor tells me. Since March of 2014 I have lost 75lbs so I know that is helping my knees and back.

I was watching this video today about redheads and they were talking about that we have a higher pain tolerance and we need more anesthesia than other hair colors and I know this is true in my case. I have a much higher pain tolerance than most people which is a blessing and a curse. The anesthesia is also a blessing and a curse. I see my neurologist at the end of the month to adjust my medication because I am having issues since the last surgery with losing my balance. I am also noticing other issues that I need to discuss with him.

I can’t wait until I am healed from this surgery and I am feeling better and I can just go without having to take a 2-3 hour nap each day. I have been in higher pain the past couple of days, but I’m thinking that I need to come up with a song or something fun, get those creative juices flowing.

Steak knife….please?

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!

Memo please!!

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.

Energizer Jenn

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.