So often the hardest part about being chronically ill is finding your zen. You spend a lot of time waiting for the “other shoe to drop.” You either have things going really well and you are waiting for something to fall apart or everything is falling apart and you are waiting for what else could possibly go wrong. The real trick is to find a neutral space in all the medical chaos you often find yourself in and just try to stay in a peaceful mindset.
It’s not easy and I am no expert on this one! I often find myself drifting into the chaotic world of what could possible go wrong next! I really have found humor to be a good outlet for myself because if I can keep laughing I find I stress less. Notice I said less, not that I don’t stress, because I am human, but I stress less. I try to explain how I feel to the doctors but even after so many years of the pains it’s hard sometimes to explain what is going on. It’s hard to explain how I feel, I get tripped up over my own thoughts and words and the more I get tripped up the more anxious I get. The more anxious I get the more I get tripped up and the cycle continues.
I think for me I have learned to just pause, take a minute to collect my thoughts and start over. I try to take a deep breathe and collect my thoughts and realize that I don’t have to be perfect. I just have to explain the best I can. No one can feel the pain like I can so I have to be my own advocate but if I’m not telling them the whole truth they can’t help me. So sometimes I just have to let them know I’m overwhelmed. Let them know how I’m feeling and then go on from there.
No one is asking you to be superman or superwoman. They are just asking you to be you! They are asking you to be truthful and honest and help them help you. Learning to be gentle with yourself is hard, but worth it.
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.
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!
Heat + Asthma = sitting in the A/C wishing for better air quality outside…..so it’s summer and I’m usually good with summer until it gets to be the 90 degree days. 90 degree days is when my asthma goes STAY INSIDE!! So today is one of those days where my asthma is calling the shots. I am chilling inside goofing off with friends on the Internet trying to remember life before I was broken!
It’s hard to remember what it felt like before I was broken. I seriously don’t really remember that time, I think it might be like when parents don’t really remember what life was like before kids. You can reminisce but it’s not REALLY the same. I mean you tend to make it all rainbow and butterflies and think about how wonderful life was before children because you don’t think about anything bad. I mean why would you? You tend to think about your life without children when the children are drawing on the wall with marker covered in chocolate syrup and they need a diaper change. You don’t think about your life before kids when they are perfect! So thinking about life before I had SO MANY MEDICAL ISSUES is similar. However I find it hard to really remember what life was like because pain consumes me now. It’s hard to remember that I actually had a time in my life when I didn’t have pain running through the back of my head. When I didn’t have to think about every step I took, I didn’t have to think about is the handicap stall free in the bathroom? Will I be able to get those jeans on over my knee braces? How far can I physically walk before I need to sit and rest and will there be a chair/bench/resting spot? Which stores can I walk around in and which stores do I need a wheelchair for? Every outing I have a million pieces that I have thought about, and planned including do I need to bring my blood thinner with me? Am I going to be out late enough that I need to bring my blood thinner with me so I don’t miss a dose?
Most people my age do not have a mental check list when they want to leave the house I do out of necessity. I have to make sure that I will have everything that I might need do to my disability. I did not think this would be my life at this age, but I know that I am meant for greatness.