Living with MS in an empty nest and exploring uncharted territory in my 40's:)
Do you ever hear people telling you to focus on the positive and that there is something good in everything?
Sometimes I forget that. Sometimes I forget that tomorrow is another day, and this too shall pass. Sometimes I forget that there are other people in the world that “have it so much worse” than I do. Sometimes I forget to be grateful for all the good in my life. Sometimes I forget…..
Thank you all for helping me remember!
So many of you know that I had surgery on Tuesday, but I don’t know if I have ever explained the history to why I needed the surgery, or what the surgery was for.
Two years ago, I broke the first metatarsal in my right foot. I was in a walking boot for a total of 6 months off and on. During the treatment, I had cortisone shots, physical therapy, and was diagnosed with Osteopenia. I had custom orthotics made for my shoes etc. For the last two years, the pain has always been there, but it has been bearable. When I would over do it, the doc would advise me to wear the boot for a couple of weeks or use my wheelchair , do R.I.C.E. therapy, and take some drugs.
About a month? ago when I started walking on a daily basis, my pain got worse and worse. My foot began to be black and blue on a daily basis. I went to see the doctor and was advised that I had gout, I DIDN’T. I try to give everyone the benefit of the doubt. In the doctor’s defense, I WALKED into the office, granted I was limping from the pain, but I did walk. Maybe he thought, if I was in that much pain, I wouldn’t have been able to walk? Whatever the case, he sent me home with an order for RICE therapy again (REST, ICE, COMPRESSION, ELEVATION) and another RX to try.
The pain got so bad I ended up at immediate care where they finally did xrays and determined that not only had I broken my foot again, but I also had severe arthritis. I had surgery on Tuesday. The short story is that they cleaned up the arthritis, and have inserted a plate and screws to fuse the bones together. I was sent home bandaged and in a CAM boot to my knee.
Before surgery I was told that after surgery I would be placed in a non removable, non weight bearing cast until I followed up with the doctor to have the stitches removed. I planned for that. What I DIDN’T plan on was all the conflicting information.
I came home in a CAM (walking boot) with verbal instructions to stay in bed with my foot elevated above my heart for 3 days, applying ice 15 mins on 15 off for the same amount of time. After 3 days, I could spend some time out of bed, but was still supposed to stay off of it and keep it elevated as much as possible. The boot was not to come off until my first post op appointment next week.
The surgery center called the following day to see how I was doing and how often I was bearing light weight on my foot. Had I taken the boot off to do ankle circles etc?
HUH?!?!?!
I was told NOT to take it off?!??!?!?
My parents, who had stayed the night with me after surgery reiterated that the doctor said the boot does not come off under any circumstances and absolutely NO weight on it.
I found the written instructions from the surgery center which give me a third set of instructions and all of them are conflicting.
I’ve called the surgeons office and can only get a nurse on the phone. Her instructions are to bear weight on my foot as tolerated. ( walk to the bathroom with the CAM boot on, but don’t get the mail, cook dinner etc.)
Here’s another problem…. I can’t bear ANY weight on my foot. The pain is excruciating! How do you define as tolerated? Is MS making me feel pain that isn’t there?
After I got home from surgery, my father told me that the doctor said he could not believe that I was able to walk at all with such a bad break, or that I had been able to tolerate the pain for as long as I had. I don’t think I have a high pain tolerance, I think it has to do with just doing what you need to do, something I have had years of practice doing because of living with MS. I know that MS screws with the way my brain interprets pain.
I don’t want to do more damage, or screw up the surgery. I don’t know who to listen to. I don’t trust my own ability to make decisions because of the pain pills, and I’m very emotional……not to mention bored out of my mind.
I don’t expect anyone to give me answers or fix this for me, I just needed to get it off my chest, and did want to let everyone know that I did survive surgery and really appreciate all the thoughts, prayers, and well wishes.
I am going to go with the thought that even the doctors don’t know, after all they are just practicing. ARGH…..
And wait…
and then wait some more….
I’m not sure who I rubbed the wrong way, but I definitely got the short end of the stick as far as surgery times go.
2 pm!!!! That means nothing to eat or drink after midnight tonight?!?!?!? Heh um ok?
To be honest, I can and usually do go without eating until almost 2 pm everyday, but that’s only because I have 2 pots of coffee in that time frame. I know for a fact that tomorrow I will be hungrier and thirstier than I have ever been in my life though, just because I can’t have anything.
To make things “more fun” the surgery center will can not use my port o cath. I really really wish I had known when they told me I needed surgery, because I would have gone to the hospital instead, but I am not waiting another 2 weeks to get rescheduled….smh fingers crossed they can find a vein in less than a handful of sticks please?!?!?
I know that I have said that I have been through surgery a gazillion times, but there is one more NEW thing about this one….
Have you ever seen or used these cloths? I have never heard of, or used them before. First time for everything.
I always plan for the worst, but hope for the best. I am PLANNING to be sleeping for the next few days as much as possible, so please assume no news is good news. HOPEFULLY, I will be back to blogging by Wednesday…. Either way, I do know that It is NOT MY TIME, and I will be back. Looking forward to chatting with you all soon!
Cute right?
Sure at THAT moment she was cute. She was letting me know that I hadn’t taken her outside to play yet, and wasn’t going to leave me alone until I did.
We went outside. I threw her ball around for awhile, watered my plants, rolled up my garden hose, straightened up my yard a bit, and then we headed back in.
When I opened the door, I was overwhelmed with a horrible smell.
(Oh come on, now what?!!?!??!)
I looked around trying to identify the smell and then it just seemed to go away. Shrug ok? I did some miscellaneous picking up and went into my office, now the smell was there?!?!?!?
I checked my shoes, clothes etc…what the hell was that? And then the smell was gone. Again.
Twenty minutes later the smell was in the living room, and then vanished just as quickly.
I played the “chase the smell game” for the next hour, perplexed that I couldn’t figure out where it was coming from……..
Finally, I sat down in the chair. Snuff came up to me to Nuzzle my leg so I would pet her. I reached down to stroke her neck and found the smell. Her neck was covered in dog shit. I know it’s cliche to say but “I ONLY TURNED MY BACK FOR A MINUTE!!!!!” (obviously that’s not true) Both of my dog’s are very well trained, well as far as staying in my yard, and usually under my feet, so of course I wasn’t watching her the whole time.
The groomer is booked today, and I’m in no shape to climb in the shower with her to bathe her, so she got the hose….. I suppose I SHOULD feel bad….but did I mention she is just too damn cute?
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.
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.
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.
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!!!
MS Graceful...NOT! 