Monthly Archives: September 2015

Rain, rain go away

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

Happy National Coffee Day!!

Yes, I’m being totally serious for once! It’s National Coffee Day which means LOTS of places will give you free coffee just because! Sheetz, Wawa, Krispy Kreme (plus an original glaze!), and Dunkin’ Donuts just to name a few! Now if only I drove….. but that is neither here nor there because I have coffee and cream and I did NOT make scrambled eggs for breakfast ūüėČ

I go on Thursday to have my spinal cord stimulator programmed. Lots of people have asked if this is normal and the answer is YES. There will be several tweaking sessions in the first couple of months until we get the right programs for me. Like right now the program is running but I don’t feel it, part of it is the position I am in, and part of it I’m sure is that I’ve had the program running so long that I just have tuned out the sensation. It’s perfectly normal to have the programming tweaked several times right after you have the unit put in, and even after you’ve had it for awhile you go in and get tune ups. So nothing to get overly excited about its all par for the course!

The one area in my back that all the steri strips fell off, the skin is starting to return to normal color! YAY! I am still taking benedryl in the morning and at night because I still itch a bit, but not NEARLY the same amount I did. I have a couple days left on the steroid pack and then that will be done too. I see the surgeon next Tuesday.

I am taking it easy and trying to slow my roll down, but it’s hard. I want to be up and moving, but I know the importance of slowing down and smelling the roses. I pulled a couple more tomatoes off our plants yesterday which was exciting! I love home grown tomatoes they taste so much better than the store bought ones. I have a few more growing and I hope they mature before we get frost here. Its a race to the finish line that’s for sure! We are also starting to get broccoli again which is AWESOME. I love the broccoli for the same reason. We also tried Brussel sprouts for the first time and they are looking awesome. They should be ready to harvest soon too. Of course I am not gardening any more this year, but that’s where the wifey has stepped in and picked up the slack. She is so awesome. I am very blessed to have such an awesome partner in life.

1, 2 buckle my shoe…

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.

Old commercials bring back memories

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.

A cuppa Joe?

So yesterday I ventured out to Food Lion! Yes, I went on a VERY short shopping trip with the wifey. We needed the essentials, you know milk, eggs, half and half (especially after the whole eggs incident which if you missed that blog you can read it here¬†Would you like some coffee to go with your cream?) and COFFEE!! Yup in my word coffee goes on the essentials list. Oh yeah I needed bananas too. Bananas go on that list because of my blood pressure medicine. So anyways…we go to the grocery store, we get a cart which they got new shiny black ones. They have 2 types of shopping carts little ones for those quick trips and the big ones that say take me so you spend a couple hundred dollars. Now don’t get me wrong in the little one you can easily spend a hundred, but less space means you tend to fill it up faster which means you tend to leave faster! hahaha So we have our list of items we need so this will be a quick trip for me and my healing back.

So we get to the coffee aisle and I tell my wife I want Breakfast Blend. She informs me she was reading that the lighter roasts have more caffeine in them, and I immediately say to her “Well when I only get 2 cups a day I want them to COUNT!!” and then I smile and laugh. I am sensitive to caffeine so I have to be careful how much I have and when I have it. So my 2 cups of coffee I drink in the morning is the only caffeine I have for the day. I stopped drinking soda in January of this year and even with the soda I usually drank caffeine free varieties anyways.

There was this one time when I was still working so this was awhile ago that with my lunch at 11am I decided to drink a Dr. Pepper10. I had drank Diet Dr. Peppers with my lunch before and the caffeine was out of my system in time for me to sleep, so I didn’t think much of it…this was my MISTAKE. Dr. Pepper10 has a LOT of caffeine in it, more than Mountain Dew. So at 3am that same day I am still bouncing off the walls. Jenna who was my girlfriend at this point is ready to murder me because I am talking a mile a minute and bouncing off the walls. I had to be back at work at 7am too….It must have been true love that not only did she let me live, but we went on to be married!

I will say after that little event, we set up ground rules about caffeine and how much I was allowed. Needless to say I am no longer allowed to drink Dr. Pepper10! I cannot tell you how much I apologized after I came down from my caffeine high. I did tell Jenna that I really had no idea that Dr. Pepper10 would have such a drastically HIGHER caffeine count than the Diet Dr. Pepper, and I was just as shocked as she was that it affected me in that way. We also have a running joke about me drinking another Dr. Pepper10…hahahah

I called the surgeon’s office told the nurse about the rash, he ordered a steroid pack for my rash so hopefully that helps the itching because I really don’t want to have to resort to oven mitts on my hands!

Don’t mind the oven mitts duct taped to my hands

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.

2 Benedryls and More Cream and I’ll still scratch if I want to!!!

So I have weird allergies, I’ve known this for a LOOONG time. Well apparently I am allergic to the steri strips they put over my incisions so I have a lovely rash on my back. Plus I have a rash from the adhesive from the covering over my picc line to make sure it stayed in place. So I am trying desperately NOT to scratch. I’m about ready to duct tape oven mitts to my hands like they do to kids with chicken pox!

The issue with me and benedryl is that it hypes me up verses puts me to sleep. So I take it and I’m ready to run a marathon…okay I don’t run. Actually if you see me running you better start running because something bad is definitely in progress like zombie apocalypse bad. I once had a doctor tell me I had the heart of a marathon runner, I just needed to lose the weight so I had a body to match and I looked at him and go sooo how about I do nothing and we call it even? He just shook his head.

Overall I am healing nicely, besides the rash, everything else is good. We are using creams and antihistamines to try and get the rash to go away. I am going to set up an appointment to have my stimulator programmed next week so I have more than 1 program to chose from for pain management. Life is good. Surgery went well. I haven’t fallen overboard yet. I am still a little off kilter. Showers still make me a bit queasy, but we’re working on that too. Can’t complain because overall I’m GOOOOD!

Would you like some coffee to go with your cream?

So this morning I got up made the usual pot of liquid gold… I mean coffee. After the wife headed off to work I decide I am feeling up to making scrambled eggs. The frying pan is in the drainer so I can reach it, this shouldn’t be a problem! Famous last words! hahaha

So I pull out the frying pan, I pull out the oil, eggs, a bowl, fork and I’m thinking I’m good to go. I get the frying pan going. I get the eggs scrambled. I decide to pour myself another cup of coffee last one for the day. THIS WAS MY MISTAKE!! So I drink my coffee with half and half. So if I pour a cup of coffee then the next logical action will be to walk over to the refrigerator to pull out the half and half and return to pour it into the cup of coffee. This morning I return to the counter where my coffee mug is sitting next to the bowl of eggs waiting to be poured into my frying pan and I pour the half and half into the bowl of eggs…..

YIKES! Now there is nothing wrong with adding a SMALL amount of half and half to eggs when you cook them, but I have add the coffee amount to my bowl…I take the fork to see how bad the damage is and decide the only way to possibly salvage the eggs is to add another egg. I laugh at my mistake because why cry over a little half and half, realize the half and half never got into my coffee, so I carefully pour the half and half into the COFFEE MUG this time, and return to the refrigerator to put the half and half safely away and pull out another egg for breakfast.

So I start thinking about my Grampa Wes and his love of milk in his coffee. So back in the day a glass of milk was a dime and a cup of coffee was a nickel and yes this is vital to my story to remember those amounts. So Grampa would order a cup of coffee but would tell whoever was pouring to stop leaving a LOT of room in the cup so he could fill the rest of the cup up with milk/cream. So one time the guy behind the counter looks at him and goes “Wes next time you want coffee flavored milk let me know, and I’ll just leave a little room in the milk for you to add the coffee!” So we like our coffee with more milk/cream than most!

So back to my eggs, I mixed in another egg and they are still not quite right, but I figure better than before and I pour them into my pan. Well now the issue is that my pan is really too small for 3 eggs plus half and half, but I decide I’ll make it work. So I’m scrambling my eggs and I accidentally toss some out of the pan onto the glass top stove…oops! So I get a paper-towel and try to clean that mess up before it dries, in my attempt to clean it I end up spilling some right down the front of the range onto the floor. Earlier in the year we had 2 cats, Nicco would have come running and ate the eggs off the floor for me, Creme will not touch people food. Nicco passed away over the summer he was 16 years old and his time had come. So I’m thinking can I trick Creme into eating these eggs off the floor for me? So I get a couple cat treats and drop them strategically over the eggs. Trust me this is much harder than it sounds when you cannot bend.

So Creme hearing me dropping her cat treats comes rushing over and she takes one look at the eggs and she looks up at me like “Gurl, you crazy!” she takes her paw, pushes the cat treats away from the eggs and eats the cat treats leaving the eggs in place… well you can’t blame me for trying!

So I’ll have to wait for my Mom to come over to help clean the front of the range off and the floor, and my eggs were delicious. Sometimes you just roll with what life gives you and laugh because why cry over misdirected half and half?

Carsick, seasick and a box of peppermint candy

So after last year’s surgery I would get horribly carsick (best way to describe it). I have always dealt with motion sickness since I was a child. So that was nothing new, but I would get in the car and I would go somewhere and then I would be carsick the rest of the day! That was not fun! I mean who wants to go for an 8am appointment and still be carsick at 10pm? NOT I! So after several referrals I met with my neurologist who explained everything to me and got me on a medicine that it took us 6 months (January 2015-June 2015) to get the vertigo, and loss of balance in check. So I then go and have another surgery! YAY ME! I really should get a t-shirt! I mean come on! It should say something witty about I just got my balance back and I went under the knife again!

Of course the neurological symptoms don’t show up right away..haha of course! So on Sunday I start to get carsick, and I did not go anywhere boooo I mean at least I should get the car ride to go with the sick right? So I have my wife call my Mom to come over because I need my dressings changed, but I’m going to have to shower and we know from previous experience that the shower and I don’t get along when I’m carsick. So Mom and her nurse friend come over. Mom helps me in the shower, I take a pretty quick shower. I get out of the shower and Mom is taking off the old dressings, but I can feel myself swaying. I mean I should have at least had a beer in my hand and a sailor’s hat on for all this! Maybe I should have started singing some drinking songs, or sea shanties! Anyhow we move everything into the other room so I can sit and her friend comments on my normally pale coloring is turning green and suggests I close my eyes. I go OOOOOHHHHH NOOOO and my eyes get as big as alien saucers and I explain that if I close my eyes I’m out for the count. So she asks about mint tea and my wife hops up and makes me some mint tea and she asks if we have any peppermint candy and at first we didn’t think we did. So I try to control my breathing which isn’t as easy as you might think.

I mean I know that I am sitting in a chair in a still room, but my brain is very much convinced that I just did a 3 hour tour with the professor, Gilligan and Mary Ann. The room is spinning a bit in between sips of tea, I’m trying to remind myself not to close my eyes which of course is everyone’s normal recourse when such things happen. Mom is almost done getting everything changed. Then my wife found some peppermint candy and that seemed to calm the seven seas.

So I’ve upped my morning dose of my neurological medicine (like my physician said I could) and I will see him in a couple weeks to report back how the surgery went and all that fun. But I can say I definitely did not book a three hour tour, nor did I voluntarily go and the professor, Gilligan and Mary Ann can stuff it the next time they try to take me on said tour!

If you hear a buzzing, don’t worry it’s just me ;-)

So lots of people have been asking about spinal cord stimulation because I just had one implanted. Go figure, I get one implanted, so I talk about it, now people want to know more…funny how that works! So the company that I went through is¬†St. Jude Medical¬†because both my surgeon and my pain management doctors like the system they put out, have had a good success with the system, etc. So if you click on the link above it will open a new window and you can learn more.

I’ll be perfectly honest with you when they had initially said to me that I might need one I did not want one. You are probably now scratching your head thinking ummmm she’s been singing it’s praise and is so happy why would she have ever doubted it? This is why they have attached 2 wire leads inside my spinal canal. There are a lot of different things that can go wrong. When they first suggested that I might end up here, the last thing I wanted was some doctor sticking wires into my spinal canal.

When the first discussions/mentions of spinal cord stimulation came up I had a lump about the size of a grapefruit that sat on the base of my spine that no one could explain to me, my legs would spasm something fierce, and I was in high levels of pain all the time.  I felt like sticking wires in my spinal canal held a higher risk than benefit at that point. I also knew that I needed to do proper research and really list the pros and cons and make an informed decision rather than a gut reaction. I also have a close friend who has a spinal cord stimulator, and had had it for years with success and I knew that it could be a possible answer.

So after the last surgery didn’t do everything we had hoped for, I looked into it more, had long discussions with my friend, the benefits, what she likes, what she dislikes, etc. I talked it over with my wife we decided to say yes when the doctor offered to refer me for the trial.

The first step in the trial is to have a psychological evaluation because they will be putting wires in your spinal canal. They need a base line on where you are at mentally, they are looking to see what sort of support network you have, and if there are any red flags. So after the green light was given from that doctor I went to the pain management doctor for the 1 week trial version of the stimulator. They put temporary wires in, and the leads come out of your back (so you have to be very careful with your activities that week), you have a box that you connect the wires to and I had 3 programs to chose from for my trial. Each day I wrote down which programs I used and what I did or did not like. At the end of the week I went back in I talked to the rep from St. Jude Medical, my Pain Management Doctor and then had the leads removed. They wrote the reports for my surgeon.

Then it was back to the surgeon’s office. I gave him the thumbs up to do the surgery and well you know the rest. Now can you hear the system while it is running? No. It does feel like a buzzing from my waist down to my legs. Right now I have 1 basic program. I am going to be meeting with the rep soon to program more specific programs for me. We are giving my body some healing time. I have a rechargeable battery in my hip. I use a wand to turn the program on and off, I can use a very strong magnet to turn the program off quickly. Nothing better than rubbing a magnet on your butt! HAHA

I am still getting used to it. Mine is positional, which means that it gets stronger/weaker depending on which position I am in, so sometimes I move and I am startled because the stimulation is much more intense. I cannot lift anything heavier than 5lbs right now. They have to give my body time to grow scar tissue to cement the leads in place. I also cannot bend, or twist.