So this is going to be a LONG week for me of appointments which I dislike because I prefer to have down time when I can. In the shower I was thinking about my week and the appointments, I couldn’t remember one. I’m thinking and thinking and it just wouldn’t come to me and it’s frustrating because I KNOW I HAVE ONE MORE! So I get out of the shower, get dressed the whole nine yards and look at my phone and it’s DUH!
So the answer becomes what do you do when you are sick/have a chronic illness/multiple chronic illnesses and have a busy week? REST WHEN YOU CAN! I have been taking a nap every chance I can get! Yesterday I took a 2 hour nap and it was GLORIOUS! I think the wifey was surprised because I have not taken a long nap like that in quite some time, but hey I was dead to the world sleeping and enjoying it, so I SLEPT! I have also been making sure to go to bed on time, waking up when my body wakes up which internal clock and I are on the outs…5:30am is way to early, but that’s what I am getting right now…and making sure to do my allowed amount of exercise daily. I am doing my physical therapy exercises as well.
We have switched from the knees to the back so I am incorporating the back exercises back into my routine more often too (I never stopped doing the core/back exercises, but now they are getting done more frequently again). Still working on the knees. Life is good. I am also doing my morning devotion, making sure to take some time out each moment to try and quiet myself which is hard right now because I am so busy.
Sometimes it’s hard to just take a moment and remember to just breathe. Just relax and be in the moment. Shut out everything that is going on. It’s good. Take just a moment and breathe. Take just a moment for yourself. You can do this, you are worth it. Just a few minutes each moment.
OH MY GOODNESS!!! So yeah… surgery is FAST approaching, so I pretty much am on the run (okay walk but you know it’s the saying here)! I have at least one if not two appointments a day right now as we get things ready for surgery. I am working fast and furious getting the last few details down before surgery number 4.
There have been some anxious moments like when my paperwork packet didn’t show up on time, so we thought it was lost in the mail. No it showed up..just two weeks late! I had the doctor’s office fax it to me. I got my physical, I’ve been having more evaluations done on my physical and mental health right now. The neurological symptoms have been better and worse all at the same time, so we are looking to get more of a baseline right now. So I am doing some testing there. They also want to make sure that I am fully recovered from that concussion I suffered from last year. I had some testing about my physical abilities to see where I have made improvements there before I have surgery again to get a baseline before I get more anesthesia. The moral of that was I have awful balance and I sway. I also snap, crackle and pop A LOT.
So I am a lot high strung, I was going to write a little and then realized I should not lie. I am very high strung right now and it’s hard to deal with and I used to be on medication to help bring me down a notch or two, but they stopped that in January and I think my family is missing it right about NOW! Sometimes it’s better to be on medication than without it, but once they finish the testing the doctor is going to prescribe me something again, but we want to wait until testing is done.
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.
When you have a chronic illness stress takes on a life of its own sometimes. It’s not just your stress either- your family members also get stressed. My wife is the most wonderful woman in the world, but I know everyday that my chronic illnesses stress her out. I know my disability stresses her out. We don’t have a normal life because of my chronic illness and disabilities. We try to have as much of a normal life as possible, but everything we do we have to think about logistics. I have a physical disability and while I get around pretty well, stairs can be an issues, steep hills are definitely an issue, and walking long distances is an issue. So we have to think about where we are going how long we are going to be there, will I be able to sit and rest at some point, etc.
It’s always the elephant in the room. Now I’ve been told that I have to wear these knee braces because my knees will not get any better, they will get worse over time how much time is anybody’s guess. I am staying in physical therapy to try and strengthen my knees and legs to hold off more damage, but so often I am not doing anything more than walking across a flat surface and one gives out on me.
Right before every surgery I get more stressed out because I want everything to go as smoothly as possible so I try to make sure everything is perfect. Yes I know this is an unrealistic ideal, but I am at heart a perfectionist and while I am working on letting go and I have made big strides I am a work in progress. So we are getting ready for surgery later in the summer and I am stressing. I am not stressing about the surgery itself. I know that is going to be fine and honestly once I am at the hospital the morning of the surgery I will be calm. It’s all the days BEFORE!
I’m trying to make the last minute doctors appointments to see this specialist and that one. Trying to make sure that these ducks are in a row. Trying to make sure all my medical team are in the loop with what is going to be happening so no one is surprised when I walk into appointments after surgery with a neck collar on. I think I just have one more of those appointments now. I have other appointments, but I think everyone is in the loop!
I am really working hard to try and find some zen and before the surgeries and back problems I did yoga, I swam, I hiked (yes I hiked!), but those just aren’t feasible right now. I am hoping that once everything is fused in my low back that I might be able to do some yoga again that is safe for back health. I really miss yoga. I am working on doing some daily meditations again because I think that is part of the reason I am stressing so much right now is that I don’t have any zen in my life.
So I am a list person and I always have been, I like lists and color coding. When I was in college I had my calendar with my color coding for when tests were and papers, etc. If I write something down I remember it a lot easier. I can usually visualize it. Now with all the neurological issues that I have suffered in the last couple of years that gift is not as reliable as it was before, but I still find that if I write something down I usually can recall it at a later date.
I like to color code and have everything have a specific meaning, I like to have plans and know what is going to happen. I do not like changes in routine, I like to have an out when I’m in a social situation. I am high strung. I have mellowed a bit in my old age, BUT I know I am high strung especially when I am anxious. Having surgery makes me anxious. I know the surgery will be fine, but there is a lot to do to prep for the surgery and for after the surgery, making sure all the ducks are in a row, so I make my lists. I make sure I have my questions for the doctors, I make sure I have my visits lined up. I make sure I have everything done. I like to be over prepared.
I like to know what I am walking into I do not like to feel like I may be ambushed. I like to pretend like I am in control. At the clinic I have one of the pharmacists trained that they can only use one color highlighter. I only like one color, so they can only use one color (okay a little on the OCD side…) I just like being prepared. So we have the date we’re getting the appointments set up so we can get everything done before surgery, making sure all the doctors have checked all their boxes, etc.
I’m making sure I have everything I need for recovery. This surgery is going to be different than the last two, but certain things stay the same as far as needs. I am working in physical therapy to build up the leg strength which I know will aid in the recovery. I am glad that I don’t have to deal with another low back surgery. I just keep taking everything one list at a time!
The waiting game is something I still haven’t gotten totally used to, am I better at it? Yes, but it still sucks. I am a lot better at waiting for my appointments, but waiting for test results that’s where I have anxiety still. The nuclear stress test from a couple weeks ago and the echocardiogram results I will get in a few days, but I don’t want to wait a few more days. I can wait a few more days, but I don’t want to wait. I just want to know what is going on now.
After I hurt my back I feel like I live in this world of the other other shoes dropping all the time. I’ve gotten to the point where I just laugh when I get bad news. I think some of my doctors think I’ve lost it sometimes, but I think of it more that I’ve learned to roll with the punches. I remember one day I went into my doctor’s office and my blood pressure was high and he said I think it’s only high because you are too anxious, you have been getting so much bad news that you are just waiting for me to give you more. I looked at him and go are you giving me more bad news today doc? And he goes yes, BUT….and gave me bad news, but it wasn’t as bad as some of the news I had received in the recent weeks. It’s like its all relative. So now I just laugh when I get bad news. I figure if I take it with a better attitude the easier it will be to deal with, that as been another life lesson.
When you live in a world where you are constantly in doctor’s offices you meet a lot of people. Some people have more medical problems than you do, but sometimes you take the cake. The hard days are when you are the one with the most medical problems. I get a lot of stares because I am so young and have so many problems. People expect me to be older, but I can’t help that. So I used my sense of humor to get me through the worse of it.
I also read the Bible a lot. I’ve always been one to read the Bible. It brings me comfort. I have certain passages highlighted in my favorite Bible because they bring me the most comfort, or they are highlighted to remind me in times of trouble hey read me. Look here this is your answer. I remember hearing the doctor telling me “You should be dead, I don’t know how you are alive.” All I could think at the time was “God.” I mean seriously that’s how I am alive. If God wanted me dead, I would be dead. God wants me alive, so I am alive. 1 Peter 5:7 “Cast all your anxiety on him, because he cares for you.” That’s what I need to remember right now. Whatever is going on with my heart rate I need to let go and let God.
I am a natural redhead. I have the fair skin, the freckles, the hazel eyes and the TEMPER to prove it. I am very soft spoken…usually….BUT when I get pushed to my limits I erupt like Mount Vesuvius. Today was one of those days that I was pushed to my limit and I erupted. When I was younger I would throw things, and I have to admit as an adult I do find throwing things still does have a certain adrenal release, but I tend to let my mouth do the throwing. I have learned that when I start to see the color red I need to just walk away.
So I got up after yelling at the person who was driving me crazy and walked away. My heart rate didn’t appreciate the emotional stress, my head didn’t appreciate the emotional stress and honestly I don’t like conflict. I like to peacefully resolve conflicts. I like everyone to talk things out. I like mediation. I like peace, harmony and butterflies!