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.