Tag Archives: phatom pain

In sickness and in health and a rainbow 2 x 4

I am so incredibly BLESSED, and I do mean BLESSED to have such a supportive spouse. I know not everyone has such an amazing partner to help in their struggles. Nennaface (my nickname for her) and I will be married two years in October, so she has been on this entire ride with me. She has been by my side through both of my spinal surgeries and helped me post op both times as well. She has stayed with me in the hospital and brought me ice chips and helped spot me in the hallways when I was ready to get up and start walking on my own. Having a support network is so important when you suffer any sort of long term condition because you need people to just laugh with. People who you can help create those “inside jokes” which speaking of “inside jokes” here is one my wife created before the surgery.

Jennclamps

The first of my 2 surgeries was to stabilize the spacer placed last September, then the 2nd surgery was to implant the spinal chord stimulator from St. Jude Medical. The spinal chord stimulator is going to help with the pain management aspect of everything.

Nennaface was serious when she took her vows that she was going to stand by me through sickness and in health which is good. I wrote out our wedding vows so they were pretty traditional, until I added that we would also fight the Zombie Apocalypse together as well. I mean what couple wouldn’t right? The other big joke between us is that Nennaface kept missing my initial advancements of flirtation, so I figuratively hit her over the head with a rainbow 2 x 4. Each anniversary has a different present, and 5th is wood, so on our 5th wedding anniversary I am going to paint a 2 x 4 rainbow and give it to her so she will always have it!

I feel like having a good sense of humor is important in recovering. If you have read all my blog posts, you will already see I’m goofy and I am even sillier in real life. I try to be silly and laugh and not sweat the small stuff (which is REALLY HARD!) I try to just enjoy life one day at a time (I’m a work in progress). I try to make the people around me laugh when I can. So today try to make one person laugh, it’s not that hard. Do something unexpected, and see how changing someone’s mood will improve your own.

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I’m baaaccck!

Finally got to bounce from the hospital! I had excellent nurses this go round which made a big difference. Got excellent post-op care. I did have a picc line this time which made the IV much easier. I was laughing with the tech because he said I didn’t scream or fuss really, and I go oh I’m sorry if you wanted me to scream you needed to tell me before you were poking me! LOL Can’t tell me after the fact oh yeah you were supposed to scream and make a fuss! Can’t go back, haven’t found a blue police box yet! I wasn’t sure how I was going to feel about a picc line, but it did made life a LOT easier.

PT and OT were good. Got to practice going up and down the stairs, walking the halls, I’m not one to stay in bed for a long time, I like to get up and moving soon after surgery. I feel better if I am up and moving. Plus if I am up and moving I get all the junk out of my lungs from surgery and I feel better faster. That’s always a plus too! I am using the spinal chord stimulator a bit, its nice to have that option right now. It really is magical!

I want to keep going on and on about everything that’s happened, but the sleep fairies are making my eyelids heavy.

Last day of freedom for a bit

So in 24 hours or so I’ll be running around like a crazy person getting everything ready to head to the hospital to FINALLY get this surgery. Today I’ll pack my overnight bag and make sure that I read all the instructions for today and tomorrow. I have to shower and use this special soap to wash any germs away, and then in the morning I repeat. I also have a list of which medications I can take tonight and which ones I take in the morning. Some I cannot take in the morning because of what they are, but some they want me taking. Luckily its all written out for me!

Today is going to be a day of getting stuff ready, any last minute details finalized but mostly just relaxing and trying not to stress. There are a million could have, should have and would have, but time is no longer on my side and I just have to release and let go at this point. My wife and I did get a lot done before today and we have been working on cleaning out the garage this summer to make the garage into a more usable space and while we have not gotten everything out that needs to come out of there, we made a lot of progress. Of course she did all the lifting and I did sorting. It was hard for me to accept my limitations, but it was also a good life lesson for me. Sometimes you have to stay on the sidelines and ask for help and not try to be superwoman.

Over the last two years I have really grown in this area of asking for help. I have also grown in the area of realizing when I am getting physically tired and allowing myself to rest. Before all this mess happened I was always pushing myself to go go go, and I still push myself harder than I should sometimes, but overall I am much better. I try not to get overly tired because I know that the muscle fatigue is just going to make me hurt more in the long run, which is not going to help me out at all and is just going to increase my pain which starts the cycle over again.

Yesterday I was walking in the store which I try to limit walking in stores, but it was a smaller store so I was walking and I started to notice that I was leaning to one side and I was getting sore, so I got the car keys and I went outside to sit and wait. I allow myself the right to tell people when I’m getting tired verses trying to be superhuman and push through.

So today I am going to make sure I have some comfy clothes for coming home in, and making sure dishes are all washed, stuff like that but besides that it’s going to be a rest up for tomorrow’s big day!

No Nap for You!

I was very tired today, so I think I’ll just take a little nap. I mean I was sitting on the sofa falling asleep, so I should fall asleep easily, right? Well I fell asleep, but staying asleep was another matter. I was able to sleep about 20 minutes and then nerve pain woke me up and my leg spasmed and I realized I was going to lose the battle of the nap, and decided that the little nap I took was all I was getting!

That was okay, I mean I did get some sleep, my head hit the pillow and I was out pretty quickly which the worse days are those were I am so super tired and I can’t sleep. I lay down and I can’t sleep at all. I toss and turn and it drives me CRAZY. Nothing worse than wanting to sleep and not being able to, especially when you don’t get quality sleep at night. I wake multiple times at night due to pain, and I have excessive daytime sleepiness.

So I will accept my 20 minute nap today and continue my countdown until surgery.

Don’t worry, it’s all in your head!

So when I was first injured I had a doctor that kept trying to convince me that my injury was soft tissue damage and would get better with time. I would go to the appointment he would barely look at me, make me try to touch my toes, and a few other things I couldn’t do and then go, okay I’ll see you in another 2-3 weeks. He’d write a note for my work and send me on my way. It got really frustrating because I knew I wasn’t making the pain up, I knew I wasn’t making the symptoms up, but this doctor was basically telling me I was faking it all.

I recently read an article about pain and cold weather where they said there is no scientific correlation between colder weather and increased pain. Anyone who suffers from joint pain I think would differ with you! Today I woke up and the temps are significantly cooler and my joints hurt, but don’t worry it’s all in my head! The article I was reading said to use heat therapy to help with pain management during cooler weather which is funny since there is no scientific correlation between colder weather and increased pain right? But what do I know? I don’t even get to play a doctor on TV!

I remember sitting in the exam room when the doctor was ready to give up on me because it had been 4 months since I had slipped, I wasn’t getting better, he claimed my MRI was normal and I burst into tears because I hurt and told him this wasn’t normal. Over two years later at least I know what is wrong, but I still burst into tears sometimes because this isn’t normal. Last night my leg hurt so bad I felt like someone kept sticking me with pins. I told the wife to stop with the voodoo doll (totally joking of course!). She was playing a video game and stopped to ask if there was anything she could do, even though she knew there really wasn’t.

I know I joke a lot, I try to laugh through all the pain and spasms, but it’s okay to cry too. Sometimes you have to let it out. I have punched my fair share of pillows and screamed and let it all out because chronic pain isn’t fair, it is crippling and takes over your life. That all being said I don’t lay in bed everyday having a pity party because that doesn’t solve my problems either.

The Rain in Spain falls mainly on the Plains

It’s raining here today which we need the rain BADLY. My tomatoes need the rain, my asthma on the other hand is disagreeing with me on the need for rain, and my joints seem to be agreeing with the asthma side. I imagine a picket line in my body where the different systems are holding up signs saying “Yay RAIN! and NAY Rain!” I am happy for the rain because now the wife doesn’t have to go outside and water the garden and use the water we pay for to water the tomatoes.

All that being said, I want to be up and moving, and I know I should be up and moving but all the aches and pains makes sitting on the couch all that more enticing! Last night I went to bed with leg spasms in my right leg, and nerve pain really bad in my numb thigh. The hardest part is explaining to people how I get sharp shooting pains in a numb thigh, but trust me it gets to bad I just want to take a knife and start stabbing it (I won’t I promise), The pain is maddening!

I was talking to a friend yesterday about my upcoming surgery and the spinal chord stimulator implant and I told her that I did not come to the decision lightly. My wife and I have had hours and hours of discussion and research before coming to this decision. I have done hours of physical therapy, I have tried the epidural shot in my back which made things worse, we’ve tried heat therapy, cold therapy, pain cream, etc. If this wasn’t a last resort for me I wouldn’t be doing this.

I don’t think anyone who has a spinal chord stimulator goes into the decision lightly. The process to even get one is long, you have to have a psychological evaluation, then you go through a trial process to see how it works for you, then you can have the surgery to get the implant. The success rate for pain relief is still low even with all that. We are hoping that I get some pain relief from the spinal chord stimulator. This is not going to be the miracle cure for me, I just need something. There are possible complications and every 8-10 years you have to go back in to have the battery replaced. Yup, I am going to have a battery surgically placed in me after Wednesday, which means I can no longer have MRIs. I will also have to carry around a card telling people I have one. I might set off the security detectors at shops. This is going to be a fun adventure! Yup I just said adventure.

After all I have gone through I just need some relief from the constant pain, even if it’s just a little relief at this point, some is better than none. Last night as my leg kept shaking, and I had sharp shooting pains in my numb thigh I kept telling myself Wednesday is only a few more days. Just a little bit longer. So today I am going to curl up with the cat, put the heating pad on my back to try and calm down the back pain, maybe help with the spams and nerve pain, and watch a movie or two because today is about self care.

Oh Where Is My Hairbrush???

At 6:57am I finally decided I had officially lost the battle with fibromyalgia and I would just get out of bed. She had won this time. It was probably about 10 minutes prior to this decision when I awoke from a very peaceful slumber to the feeling of a hairbrush under my right hip. A very prickly, pointy I am going to break said invisible hairbrush in half sort of feeling under my right hip, now if it had been lower I probably wouldn’t have felt it because I have no feeling in my thigh really. Nope, it had to be my hip. I was fully aware there was no hairbrush on my bed and this was all in my nerves that just didn’t feel like cooperating with me today. I also had Larry the cucumber from VeggieTales in my head singing his silly song, which didn’t help the situation, but was rather amusing! So I in a last stitch effort to sleep a little longer, flip to my back….

OH HECK NO!!! Yeah did not help, pretty sure my knees popped, back probably cracked and that was even more uncomfortable than thinking you had a hairbrush under your hip. So I decided to raise the white flag, and get up. I pulled off my oh so sexy CPAP mask, turned off the machine, and got up for the day. This is definitely a day where I think I need a cup of coffee to make my cup of coffee. I also decide that I need a shower in hopes that calms my nerves a bit….

Showers sometimes help, sometimes don’t. Today it didn’t make a huge improvement overall. I feel really stiff still, so I think it didn’t really matter. I also have a migraine today so my head is pounding in all this so I really just feel like crawling back into bed, but then I remember the invisible hairbrush ready to attack me again and decide against it. I’ll probably try to lay down later on my wife’s side..maybe the hairbrush won’t follow me…

The tricky part about nerve pain is it makes NO SENSE whatsoever! You can get nerve pain anywhere in your body. For me it tends to be in my legs, arms and my neck/shoulders which is pretty typical of fibromyalgia patients ( Mayo Clinic’s page on Fibromyalgia ) but what really hurts is when I get the nerve pain in my right thigh that I have no feeling in. Yes you read that correctly. My right thigh has been numb since my surgery (September 2014) but I can feel the nerve pain and its the worse because my thigh is numb, so its a combination of nerve pain and phantom pains at the same time. I am really praying that this next surgery will help with that. If nothing else if I could get relief for just that pain I would be a really happy camper!