“Practicing” for recovery

August 31, 2018August 30, 2018 ~ msgracefulnot ~ 20 Comments

I wrote yesterday about preparing for surgery, and although I have been through this a gazillon times, I forget to mention something very important. Try to envision yourself with your Post -op limitations and practice overcoming them!!!!!!

Over the years, several people have asked me what I considered to be the worst part of having MS, while the worst symptoms may vary day to day, my answer is…

The worst symptom of having MS, is the one you haven’t learned to adapt to. By adapting, I don’t mean accepting it, so much as I mean finding a work around or a way to still accomplish your goal. Sometimes you have to get pretty creative, but most symptoms can be managed with some trial and error.

Getting around your house in a wheelchair

While I have been in a walking boot for a couple of weeks now, after surgery I will not be able to bear any weight on my foot, which for me means using a wheelchair. I’ve had to use a wheelchair before, but not in this house and for other reasons. So yesterday my first step was going through my entire house using the wheelchair. The only trouble I ran into was trying to get into the bathroom. First of all, the door is only wide enough for the chair, NOT for my hands on the wheels. Whoops! *Note to self another home improvement project for next year.

The next issue I RAN into (literally) was the squatty potty.

I can not get close enough to the toilet, pivoting on one foot with the squatty potty there, so it had to move.

The pain pills are not going to help with my normal issue of MS and constipation, so better I just make a clear path for using the laxatives I know I will end up needing. Even “power pudding” doesn’t help with the constipation from Norco.

Selecting clothing for after surgery

Again, I have been in a boot for a couple of weeks, so I know there will be some challenges putting on pants. Not that I like wearing them anyway, post op visits and physical therapy will require some form of clothing for my lower extremities, so I have purchased some guys basketball shorts to wear for those occasions. Even those will fit over the cast.

CLIMBING into bed

This one may not happen for a bit. I have one of those really tall beds that you literally have to Climb up onto.

Okay not literally like this one, I am totally being dramatic, but I discovered it is difficult to climb on my bed without bearing weight on my right foot, so I will be sleeping on the couch for a few days.

I have packed a small bag of things to keep me busy, while I am NOT sleeping. Notebooks, phone and laptop with chargers, tv remotes, and a couple of books. The only thing I am missing is a mini fridge and a maid. But at least this isn’t permanent. (putting the things in a bag will allow me to transport them to another room easily without worrying about dropping them)

Thank you for letting me share my tips with you. To be honest, this is part of my mental checklist to prepare for surgery as well. I will write more about the MENTAL part of preparing for surgery later this weekend. I hope you all have a wonderful holiday weekend. If you do anything fun or adventurous please share pictures so I can live vicariously through you!!!

Too Many to count

August 30, 2018August 30, 2018 ~ msgracefulnot ~ 29 Comments

I’m not just talking about the number of speeding tickets I have had. (although that number almost equals the number of years I have been driving) YIKES!

I’m talking about the number of times I have been “put under”. When you get general anesthesia, you’re “put under,” which means that you’re totally unconscious and immobilized. You “go to sleep” and don’t feel, sense or remember anything that happens after the drugs begin to work on your system.

My very first surgery was having my wisdom teeth removed when I was 16. Between that time and my most recently scheduled surgery (having screws and a plate put in my right foot on 9/4/2018) I have lost track of the number of times I have been put under.

I really do need to keep better records.

The most notable surgeries were:

an emergency C-section with Thing One
a hysterectomy
CMC joint replacements in both my hands
the power port being placed in my chest (on valentines day…smh)
a laminectomy of my thoracic spine
and my every few months Botox in the BLADDER surgeries.

You could almost call me a professional surgeree? I don’t really think that’s a word though, so let’s stick with patient.

I’m not writing this post to elicit sympathy, but rather to share some of the things I have learned over the years to help me prepare for going under. For me, preparation for surgery begins more than a week before surgery.

The FIRST thing I do is take a look at the amount of recovery or down time that the surgeon is recommending, then DOUBLE IT. (Most people probably don’t need to double it, but I’m going with MY past experiences, AND the whole plan for the worst, but hope for the best scenario) Make a list of all the things that you are responsible for during that time period and begin to look for someone to COVER for you. Your list should include the basic necessities of adulting like eating, bathing, paying your bills etc.

In my case I have purchased enough groceries for a month. I won’t claim that they are the healthiest options available, but this will allow me to be as self sufficient as possible. All of my bills are set up for automatic bill pay. I have hired someone to take care of my lawn. My kids will be grabbing my mail for me a couple times a week etc. As far as bathing goes, I just won’t do it. I’M KIDDING!!!!! I have a shower chair and after the number of medical procedures I have had performed, I have no modesty left, so my kids and some close friends are helping with that.

If you are not comfortable sharing that much with your family, they do sell bathing wipes that you can use by yourself.

While on the subject of modesty, BEFORE surgery is also a good time to PUT away anything you might not be comfortable sharing with friends or a caretaker. (Don’t put spare cash for food delivery in the same drawer you stash, “OTHER” things. If you catch my drift.

Most importantly, don’t try to be a hero, super or otherwise. Just because you THINK you can do something, try to error on the side of caution, at least while you are on pain meds. If you wouldn’t do the task after drinking a 12 pack, maybe wait just a little bit longer or ask for help?!?!?

While I have figured out, kind of, how to drive with my left foot, I will be relinquishing my keys for the next couple of months. While I have proven to myself that it CAN be done, it’s really not safe and is against doctor’s orders. I would hate to have the issue come up if I had a flat tire, or worse was involved in an accident.

I have more that I would like to share about preparing for surgery, especially about the night before and day of, but I still have more to do and a few days before surgery, so I will write more later.

Have you ever had surgery? Can you think of anything I have missed? Any funny stories to share?

Let’s get moving…

July 13, 2018July 8, 2018 ~ msgracefulnot ~ 30 Comments

Thank God not the packing and unpacking kind! I mean the putting one foot in front of the other moving kind of moving.

So I bought a “generic” Fitbit. By generic I mean the $30.00 not name brand one from amazon. ( If interested….click the picture!!!) While the specs say that I can link it to my phone, check my heart rate, and sleeping patterns, the only thing I investigated about it, is how many steps I take in a given day.

I’ve heard people talk about making their goal 10,000 steps in a day, and wanted to see where I compared…..

NOT EVEN CLOSE!!!!!!!!!!!!!!!!!!!

On an average day, I took about 1500 steps. WTF?!? I am busy from the time I wake up til the time I “pass out” each night…. That couldn’t be accurate!!!!!

Well it turns out it is. I spend so much time driving, waiting at doctors, playing on the computer, fighting with insurance companies, reading, doing laundry whatever…that I really don’t move. SMH

Time to fix this shit! I made myself a challenge to get at least 3000 steps in a day and I have done it!!!!!!! Can I have a cookie now?.… No I’m actually serious…..Ok I’m not, but I AM feeling good! I am proud of myself. Not only for setting a goal and making it, but for facing a huge fear of mine by walking alone again.

I am not quite up to a mile at a time yet, but I have learned that if I can beat the heat (waking up at 5 am), I can come close. I have even started taking my dogs with me again… ONE AT A TIME, and holding the leash very loosely.

Walking by myself in a residential area is kind of boring,

and to be honest it is still kind of scary for me considering a crack like this can be a major road hazard. but it is still better than walking on a treadmill and every step I take hopefully keeps me out of a wheelchair that much longer.

Sometimes, I can con my neighbor into walking with me, but she works nights and doesn’t appreciate the early morning “Hey let’s go for a walk wake up calls”.

A bonus is that I don’t smoke when I walk, so if I can keep increasing my activity, maybe it will help with the quitting smoking goal too.

Getting a blood patch for CSF leak

July 12, 2018July 11, 2018 ~ msgracefulnot ~ 15 Comments

This is the last part of A very long walk.

For those of you who have been reading along and commenting…there is a happy ending and an even better future

The PLAN was that my dad would drive me in my van with the seat laid flat, and my mom would follow in their car. Decatur Memorial advised my local hospital that I would be arriving later that day and that I needed a BLOOD PATCH. They even printed all my records for me to take with me. Yah should be pretty simple right?!?

NOT EVEN A LITTLE BIT!!!!!!!

While we did make pretty good time getting there, ( a little over 4 hours) the hospital could not just admit me because I had declined the ambulance transport, instead they tried to seat me in the waiting room.

When you go to the Emergency Room, they take patients in the order of the severity of their injuries, I get that… Unfortunately a “headache” doesn’t rank very high on the list.

I don’t know if you have ever had the kind of headache that comes with a spinal fluid leak, but I promise you, it’s enough to make you think you are losing your mind. I still can’t quite explain it either.

Maybe kind of like the spins, after a night of too much drinking combined with someone smashing your head between two symbols while trying to speak to you in 3 different languages at the same time?

I really think I must have looked like I was losing my mind because I literally laid on the floor in the emergency room to try to stay horizontal. I’m really not a germaphob, but even I would draw the line at that normally.

I was frustrated, my parents were frustrated why couldn’t you just do this blood patch thing?!?!? I don’t remember all of the details that followed other than, I left and went home. Well my dad drove me home and they both stayed at my house with me.

I think some of the difficulty was that it was a holiday weekend. Another issue was that they were not sure where I was leaking cerebral spinal fluid from, and doubted the effectiveness of a blood patch if they didn’t find the right site.

Once the weekend was over, my mother was able to contact the neurosurgeon that had performed my thoracic laminectomy from a few years prior, and he said to bring me right into his office and he would do the blood patch immediately.

So what is a blood patch?

An epidural blood patch is an injection of your blood into the epidural space. The epidural space is not an injection into the spinal cord itself. The spinal cord and spinal nerves are in a “sack” containing clear fluid (cerebrospinal fluid). The area outside this “sack” is called the epidural space.

This is a great link explaining it in more detail. What is a blood patch?

I remember being terrified to stand up after the procedure. I had the doctor on one side of me and the nurse on the other, and I slowly stood up….. Nothing happened!!!!! My head DID NOT explode, there was no projectile vomiting!!! I was still sensitive to the light, but I could handle that. OMG it worked!!!! and almost immediately too!

After going home, I still continued to chug coffee and laid in bed for the next couple of days….just to be sure.

For the next month or so, I would continue to get migraine like headaches, but they were not positional and could be managed with medication.

While I thankfully no longer suffer from those headaches, I plagued myself with the fear of walking alone. When I walk in my house, I grab everything, walls, furniture, people. When I walk outside, I always have someone with me. What I did was to make myself a prisoner to my fear.

Prisoner no more

If you have been reading my blog posts for the last month, you know that I have been in a dark place both emotionally and physically. I don’t want to feel that way anymore!

So I started to force myself to “hit the road” again…. God let’s hope not… I mean walking again.

A long walk (part 2)

July 10, 2018October 5, 2018 ~ msgracefulnot ~ 17 Comments

Part 2 of A long walk

So there I lay on the floor in my kitchen. Apparently I was able to call my daughter’s name before I collapsed. When I “came to”, she was crying, yelling my name, and attempting to clean up the blood on my face and legs. She told me she had called 911 and asked me what had happened.

The paramedics arrived quickly and suggested that I let them take me to the hospital. NO!!!!!! This was not my first rodeo, and besides that how would I get home and who would stay with my daughter? After passing their “awareness tests”: “What day is today? What’s your name? Where are you? Who is the president?”, they gave me a list of symptoms to watch out for and left.

I let Thing Two put a contraption like this on my face/head for a few days, and I slept ALOT. ( being woken up by someone every couple of hours as the paramedics recommended) After about a week, I was left with remnants of a black eye, the swelling of my chin in the above picture and a bit of road rash on my hands and knee.

I tried to begin walking again after a couple of weeks, but I couldn’t bring myself to leave the house on foot. I was terrified that I would fall again and wouldn’t be able to make it back up. My neighbors and my kids had done enough “babysitting” ,and I didn’t want to be a burden any longer. I found myself on Amazon ordering a complete set of protection gear including hand/wrist guards and knee and elbow pads, but it would take a couple days to arrive.

Time for a road trip

Thing two went to stay with a friend for a couple days, and I hired someone to dog sit for the weekend. As I was making the 3 hour drive to Einstein’s current house, I started to get a headache. I popped a couple advil and continued on my way. (Advil tablets are a permanent staple in my purse, along with bandaids, xanax etc)

When I arrived at Einstein’s I immediately went to lay down and fell asleep quickly. My MS Bladder woke me up after about an hour and I tried to sit up. TRIED being the operative word. My head felt like it was going to explode, and I quickly laid back down. What the fuck was that?!?!?!?

After lying there for a few moments, the pain in my head disappeared and my bladder started screaming again. Once more I tried to sit up. This time my head did explode in the form of projectile vomiting. I managed to crawl into the bathroom, empty my bladder, and slept on the floor for the next few hours.

When I woke up, I cleaned myself and the mess up and crawled back into bed, where I stayed for the next two days.

What the fuck kind of ‘flu’ is this? Why did my head want to blow up everytime I sat up, and then the pain go away almost as soon as I laid back down? How was I going to get back home?

to be continued……