I used to love the changing of the leaves, the cooler temperatures. I mean there is some real beauty watching the leaves cascade down…now I see them and I think fall hazard..they get wet, I’m going to slip! I’m constantly watching for branches, leaves, pine cones, acorns, etc. Everything has now become this natural obstacle course that I didn’t train for! I mean who thought I looked like I wanted to compete in some Ironman? I did not sign up for this! I mean I can barely walk to the car on a good day! (Okay maaybe that’s a bit of an exaggeration, but there have been days that I have tripped over my own two feet!)
So the wifey is planning on going roller skating this week and I was telling the physical therapist this and he looks at me and I go no I am not going with her, and he gives this huge like HUGE sigh of relief. I laugh and go hey I know my limitations I barely walk without hurting myself! He laughed and asked if I was always this accident prone and I go NO! I actually did several sports as a child! Gymnastics, soccer and swimming to be exact! He was a bit surprised I think. I’ve just become the world’s biggest klutz as an adult!
So with fall comes the cooler temperatures which means the hardware in my back is starting to hurt. This is the part of the year I dislike. I also have lost the weight so I don’t have as much insulation! Actually that part is a good thing, and I’m glad for that part! I am pulling out all my sweaters and hoodies which are now about 3 sizes too big for me, but they are sweaters and hoodies and it doesn’t really matter if they are 3 sizes too big for me. We are in the process of buying me a new winter coat however because that is 2 sizes too big for me and it looks rather ridiculous, so we’re going to fix that situation. I have jackets that are the right size, or at least only a size too big, but the winter coat definitely need an upgrade.
So I am going to sit over here sipping on hot cocoa and wearing my hoodies and sitting under my blanket that I pulled out of storage because that’s what I do when it starts to get cold again, I bundle up because I’m always cold! They laugh at physical therapy because I usually have about three layers on and I have to undress before my appointments because I only need one layer to do my exercises. But hey I admit I am cold, I take no shame in that!
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!
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.
OH MY GOSH!! There is a bright yellow round thing in the SKY!! Yes ladies and gentlemen we have SUN!! Luckily I have transition lens otherwise I think I would be sinking into the ground from the brightness! I would be standing outside all day but a) I surely would burn in the first 5 minutes since I am pasty white and b) I can’t stand for long periods of time so I’m just out of luck! I did walk outside for a couple of minutes just to feel the warmth on my skin and soak up a little vitamin D before my body began to hurt.
Today the most pain is across my upper back. I feel like I have a really heavy backpack on. Yesterday I was experiencing chest pains again, I checked my heart rate and it was 140…it should not have been that high. So I am going to have to bring this up with my doctors again and see what they think. It could be related to my thyroid. We are confident at this point the issue isn’t stemming from my heart so we have to look at other areas in the body. I know with fibromyalgia you get the pains across the upper back so I believe that is what is causing that pain, at least I think that is…you never can tell with me. I still have a bad headache on top of everything else that is going on right now.
The doctor is going to tell me I’m falling apart again, I’ll just sweetly smile and say YES. There isn’t much else I can do at this point. I know he’s going to run a couple tests tomorrow but that’s a given at this point. I am used to it, I just wish I got a sticker at this point! I mean when you are a kid you get a sticker, why can’t you get a sticker as an adult! I should tell Mom I want ice cream! I don’t think she’ll go for it, but I should try anyways!
I am ready to crawl back into bed! Which it’s so pretty outside I also want to enjoy the day because it FINALLY stopped raining! Oh the battle of chronic pain!
So I used to be able to remember EVERYTHING. It was very handy when I was a school teacher. Especially if I wrote it down. I had this ability to remember things really well if I wrote it out, I was able then to visualize it and then I was good to go. I loved to color coordinate things as well. I was super organized and I LOVED writing things down on a calendar. I still do. I have to write things down, but I don’t have the same recall like I did before the fibromyalgia. Today I have serious brain fog an I keep forgetting what I am doing. This morning I was in the middle of a project and I totally forgot about it and I sat down at the computer and 10 minutes later I look up and realize everything is still sitting on the kitchen table waiting for me to finish it.
One of the pharmacists at the coumadin clinic laughs at me because I have to have a specific color highlighter on my paperwork, I am very specific! He just laughs because if he picks up the wrong color I make him change it. Last time he picked up the right one without me correcting him! He’s learning!
It’s raining AGAIN, I didn’t want to get out of bed today, I’m actually thinking about climbing back in it to take a nap. I have a migraine and I am so sore. This wet weather is really playing havoc on me. I will be glad when we finally dry out a bit. I just want some warm sun on my face! Of course when it’s 90 degrees and we’re in desperate need for rain everyone is going to remind me of when I begged for the rain to stop.
There just needs to be a bit of balance! I mean like everything else in the world right? Balance makes things better!
So we had over 4 inches of rain fall this month! CRAZY! I hope the gardens everywhere are SOAKING IT UP! I mean I want lots of fresh veggies at the local farmer’s markets, because someone should be benefiting from all this rain, rain and yeah MORE rain! The wifey planted a small garden for us and she has a few more plants to get in, but all this rain has made that a bit of a difficult task!
My knees have been rather swollen, I noticed last night they were about twice their normal size, they still have a nice click, click, click, if I was Dorthy I wouldn’t have to click my heels, my knees should do it! I could just close my eyes and bend my knees “There’s no place like home, there’s no place like home!”
I really am over being sore. I had to turn the spinal cord stimulator off for a bit earlier to give my stomach muscles a break. I have had my stimulator turned up higher than normal because I am in more pain, so my stomach muscles can feel the buzzing which normally they don’t. So I can only take that for so long and then I have to give them a break.
I do like the stimulator and I am glad that I have it, if only it covered my WHOLE back I would really be in business! I mean my upper back and lower back I wouldn’t complain. Actually they are working on a wireless one that can be put in to do other regions and I do believe they will be able to do neurocord stimulator all over the body in the next few years. So who knows maybe in the next 10 years I will have the ability to have it over my whole back….
For now I am going to enjoy the coverage on my low back and legs. Try to cover up the really annoying nerve pain in my feet and enjoy life because life is too short!
Mother Nature needs to stop all this COLD WEATHER!!! I mean this morning my right arm and elbow hurts. It’s hard when you have so many chronic pain issues, fibromyalgia, chronic pain syndrome, etc. I woke up this morning and my elbow hurt! I mean really?! I think it’s probably a combination of the cold weather and the fact that I push up using my arm because of my back. It’s the same thing with my hips being out of alignment because my knees are in braces, when they pop then my hip tends to get out of alignment. I also tend to lean to one side when my back hurts. I try really hard to keep good posture because I do know how important it is, but I am human after all!
I straightened my knee out and I heard a really loud POP! Ah the joys of having knee caps that don’t want to stay PUT! I really wish they would however. Is it too much to ask for my body parts to stay where they are supposed to stay? I mean I shouldn’t have to say to the knee cap stay knee cap, stay..good knee cap! The physical therapy is helping, I know that it will take time to get all the muscle groups to be strong enough to take over for the knee, but it’s all good. I am upright and that’s all that matters.
It’s a good day when you get out of bed and you are upright, people who have been confined to a bed understand this gift. People who have back problems and have been confined to a bed understand this gift even more! Being stuck in a hospital bed and told you can’t get up or you will die definitely not a highlight of my life. I almost want to make a top ten list of things I really wish I hadn’t heard from a doctor and You should be dead would be number 1 for sure. Still can’t figure out why the doctor didn’t brace us for that news! I mean seriously!
I really want some heated blankets today it’s cold, wifey opened the door to the house to leave and a gust of arctic wind hit her and she was breathless. She was not expecting it to be that cold in April. The weather just has not been that cooperative. I just want warmer weather in hopes that my joints won’t hurt as badly. I mean I get that they hurt, but right now they hurt so badly I want to disown all of them one by one!
List of my favorite four letter words…NOPE not writing those out you’ll just have to guess!
So I told the physical therapist that the upcoming SNOW had me in a lot of PAIN and I wasn’t looking forward to all the WORK she was going to have me do today. She said oh you’re one of THOSE people. I said yeah, my face is tingling actually because I have a migraine due to all the changes in the atmosphere. LUCKY MEEEEE Actually physical therapy was good we did several different exercises to strengthen the leg muscles, several of them I remember from the LAST time I was in physical therapy. I also got a bit of retail therapy when we went to CVS and I got two bags of valentine’s clearance for 46 cents! I saved 99% I had not done anything like that for a long time, and only got to do it because Mom was there to help me. Helps when you have someone else to pick stuff up and price check for you.
Otis and Creme have both been driving me a bit nutso but I think its because of the SNOW that is coming. Otis keeps trying to chew on the wooden stool and Creme wants to do figure eights around my legs which is not kosher since I am stable but not that stable right now! I know they both just want their loving and we do spend a lot of time playing and hugging/loving on both of them. I think right now its just the weather and I don’t feel well, the wifey doesn’t feel well and the animals know it.