So I was cleaning out some boxes and I found some old blood work and lo and behold I was tested for Factor V about 10 years ago. Did I remember this? NOPE! Apparently my doctor felt I might have a blood clot disorder. Was he on the right track? Absolutely! Did he do enough testing? No, was this his fault? Absolutely not! The clotting disorder I have is not routinely tested for. Had I remembered that I had been tested for Factor V this would have really helped the doctors back when I had my massive blood clot, but such is life.
So my filter was removed, the allergic reaction has healed, but I still have some research to do on why I had the reaction. Got to love allergies! You got to take life one day at a time!
I was trying to be more active, and in return for trying to be active my pain level started increasing. My hips started hurting, so I ended up being benched! So much for trying to be more active!
I also am finding that with my new weight loss…my knee braces are getting too big again….yes..I just got new braces and these are already too big…oops! So I might need to get new ones again which is a good/bad problem to have!
Life is always an adventure so set sail and enjoy the ride!
When you have any major life event there is a before and after. After awhile you can’t remember what life was really like before..you have this rose colored glasses view of your life. You forget how hard life was, you forget the problems you had because life is hard now, life is different now and you long for your before life. I make a lot of jokes about my injuries because it helps me deal with the fact that I will never have my old life back. I will always log roll to get out of bed in the morning. I will always have to watch the placement of my feet when I walk. I will always be careful about blood clots for the rest of my life.
When I was young I was in a major car accident, I survived. I thought that was the worse thing that could ever happen to me. I will be celebrating my wedding anniversary. I remember my wedding day and how excited I was and now I forget what life was like before I was married. You get used to what life is like now.
I am used to going to the doctor all the time, physical therapy every week. Home exercises, working to strengthen the muscles that have weakened. I was talking to one of the doctors this week about permanent nerve damage because in my thigh I have permanent nerve damage and they are concerned that I might also have permanent nerve damage in my arms. There is also a possibility there is permanent nerve damage in my neck, but we think it’s only temporary nerve damage! It’s sad when you get excited about temporary nerve damage.
But for me there will always be a before and after for me. There is a life before all these surgeries and the blood clot, a life that I don’t remember anymore. A life that I barely remember anymore. Life without daily pains, wearing braces, watching where I move, how I move, and what I do. I can’t just do what I want anymore.
How can you still be smiling? How can anyone possibly smile when they are in that much pain? Maybe you aren’t really in as much pain as you say you are! Oh trust and believe I am! When your body is basically breaking down you have two choices stay on the pity pot or jump off and try to make the best of a crappy situation. I choose the latter. Trust me waking up every morning and putting knee braces on is not my first choice. Waking up and putting on knee braces and switching from a soft neck brace to a hard neck brace is REALLY not my first choice right now, but it is my life. I can either suit up and show up or I can hide and be all poor me. Suiting up and showing up means I can see my niece and hear her giggle and see her zoom around the living room in that dress she pulled out of the dress up box. See my nephew giggle as he tries to steal his sister’s cookie while she’s not looking. Suiting up and showing up means I get to spend time with my brother and talk about why worm holes and Dr. Who actually make perfect sense and why the 10th Doctor is better than the 9th.
Suiting up and showing up means that I go to physical therapy and do the stupid squats that I hate to make my legs stronger so that maybe I won’t fall next time. Suiting up and showing up means that I get to have dinner with the whole family and laugh about this or that story that I had forgotten about until someone brought it back up from the family archives. Suiting up and showing up means I hear the prognosis and treatment plan from the specialists even when I wish it was better news. Even when I wanted better results.
I know I joke and laugh and smile more than people might expect, but that’s how I deal with the pain. Just because I’m laughing and smiling doesn’t mean I’m pain free it means that I am trying to do everything I can to fight the pain. I get tired easily; much easier than even I want to admit. I just have to honor my limitations and keep working on what I can fix and accept the things I cannot change at this point. It’s a bitter pill to sallow at my age, but I know things could be worse. I am going to keep on moving upwards and onwards! You have to keep a positive attitude or else all the negative will eat you from the inside. You cannot let all the bad things get to you or you will sit on that pity pot until you no longer exist and who wants that? NOT I! I would rather suit up and show up and enjoy life with limitations than miss out on all the joy life brings me!
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!
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!
So I had a horrible reaction to the steri strips the surgeon used to close my incision, so yesterday I called and the nurse told me to carefully remove the steri strips. I started taking benedryl and this morning my skin looked a LOT better already! So I am hoping that another day of benedryl will make my skin start looking more pale looking (aka normal) verses the fire engine red it looks now. Of course once it starts calming down I’ll have to put some antibiotic cream where my skin pulled off with the steri strip.
So the good news in all of this is the incision itself looks awesome! It is nice and closed and should finish healing nicely! I just wish I didn’t have the allergic reaction on top of it! I also am going to tell the surgeon no more steri strips because this reaction was so bad this year that if there are any more surgeries we’re going to have to think of something else.
Besides the allergic reaction healing is going pretty well. I am trying to get used to how my throat feels, the first few days I felt like I had a lump in it, as the swelling as gone down the lump as gotten smaller! The biggest challenge is not to try and look DOWN! You never think about how much you look down until you can’t!
I was talking with Mom about all the metal in my body now and I am racking up quite the list! Every time they ask I start at the head and make my way down and the nurse has to write fast to keep up with me! That is the life with chronic illness! I have to start with the head and move down or else I will forget something, I find that is the easiest way for me to remember everything. I was going over everything and my mother in law told my wife that I am almost as bad as my father in law!
I just keep reminding myself to take life one day at a time. I keep taking one challenge at a time. I just have to keep the big picture in mind. I think life gives you challenges and you just have to roll with the punches and tell jokes.
So this week at physical therapy I did squats… which is not my favorite exercise. I dislike doing squats and I do a modified exercise because of my damage to my spine. I am also under the close supervision of the tech while doing the squats. Well I’m not sure if we just did to many this week, or if it’s just the fact that I have no feeling in my right thigh or a combination of everything…but this morning my right leg, specifically my thigh muscle is buckling. Now the fun part is because I cannot feel my thigh or the muscle I get no warning until it buckles.
Which I want to remind everyone that my balance is REALLY CRAPPY! So to be walking and then all the sudden my leg to buckle is not working out well for me this morning. I was walking and it buckled and I stumbled. All I can think is I cannot fall this close to my surgery. I cannot break anything this close to surgery. I dislike that I cannot feel my thigh and that I randomly lose muscle control in my leg. I have a knee brace, but if this continues I have a feeling the doctors are going to evaluate if I need a longer brace on my leg for stability.
This is also why I told the hospital that I am 100% a fall risk. I can admit that my balance is crappy, I can admit that I have neurological complications, and I sway when I try to stand still. My back is not fused and my center of gravity is non-existent. I know this, and I have begrudgingly accepted it for now. It’s hard to accept what you cannot change, but it is wise to learn your limitations before you hurt yourself more.
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.
Apparently I lost my mind for a moment this morning…now it could have been that my body decided that 5:30am was a good time to wake up and my brain wanted to sleep later. I did try to stay in bed later, but the longer I fought my body the more my pain increased and I soon realized this was a losing battle. So body 1-brain-0. So I got up threw on my walking clothes figuring if I was going to be up so early I would get my walk in early, then get breakfast and a shower. Sounds like a plan right? So I get the socks on, put the shoes on stand up and CRACK! BOTH KNEES CRACK like the old wooden staircase in some creepy old house you shouldn’t be playing in as a kid. I close my eyes and softly shake my head…knee braces…still sitting on the FLOOR…
Remember what I said about body-1 brain-0 WELL apparently when my body won the argument to get up, my brain still tried to sleep in because now I have my shoes tied and my knee braces are sitting on the floor beside me. Of course I now have to untie said shoes to take them off and put the knee braces on in order to walk, but what else is knew? I think I need some coffee…
You’re sitting in the doctor’s office and you get a new diagnosis..what is the first thing that pops in your head?
d) I’m switching Doctors
The thing about having a chronic illness is that often e is the one that pops in your head! You’ve been to the doctor so many times, they have run multiple tests and when you FINALLY get a diagnosis you want to jump up and down and scream and shout! However usually by the time that happens you don’t have the energy to jump up and down or scream and shout! This year alone I have had multiple new diagnoses, some I was happy about, some not so much and I might be getting a couple more by the end of this week…yeah not sure what my response will be.
I am tired right now. I am so exhausted from everything that is going on that I am in survival mode. I am falling asleep at night on the computer in mid-typing which is the clue I need to hang it up and go to bed. I know part of the issue is the heat, it is HOT where I live right now and so being out in the heat is not helping, I have had a lot of medical appointments getting everything ready for the upcoming surgery, but the other part of this is just ME! It takes a lot of energy to do everything. When I walk I have to be aware of my foot placement because my right foot likes to drift and then that puts added pressure on both knees, which I don’t need. So I have to be careful of how I am walking. My left ankle has been sore which I can’t figure out if I just stepped funny at some point in the last week and didn’t realize it, or if something else is going on.
I have really bad balance issues so I am always having to be aware of my surroundings to make sure I don’t bump into something. I don’t want to knock anything over because I am closer than I think I am, which happens. I have been having headaches because of the weather, and my allergies have been acting up as well. So things are just all sorts of complicated right now and I have to work hard at keeping them uncomplicated. That takes a lot of physical and mental energy. Add the fibromyalgia in the mix and I’m done!
Sunday I was walking out of the bathroom at church…this should have been an easy task…but it’s a narrow bathroom. I did not walk to the handicapped bathroom. I lost my balance and my knee brace got caught on the cabinet. Wifey asked me if I was alright and I assured her I was, and I was it was more embarrassing than anything else. I sat down and fixed my knee brace. I wanted to make sure that when it got caught it didn’t get twisted.
I just like to make life interesting for everyone around me! I like to keep everyone guessing! I will be glad to have the rest time after surgery! Right now I feel too busy which I know that will slow down to a halt very soon and I will have time to breathe again!