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!
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.
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!
I’m sitting here thinking about a million different things and I’m tired and want to sleep and wide awake at the same time. My mind is pulling in this direction and that and I want to sleep. I want to rest even for 20 minutes and I would be happy. I’ve been sitting in the dark for like an hour now hoping for some settling of an unrest mind. The funny part about this mind of mine is that I’m not anxious or nervous, I just have a lot of thoughts going on all at once. I read an article about yoga and how certain poses can increase glaucoma risk for patients with predisposition towards the disease. I read the positions mentioned and it made sense to me.
I remember one of my favorite things about being in college and then graduate school was reading scholarly journals and reading the latest studies and research. I know sounds like a snooze-fest to most, but it really interested me to see what people were studying especially when it came to things involving human behavior. This makes sense since I was a teacher so I read a lot about classroom management, children’s development, etc. As a graduate student we read about testing, language acquisition and the affects of knowing more than one language. I think what frustrates me the most right now is when I am looking at an object like a table and I can’t think of it’s name, but I know it’s name in 3 languages! I’m standing looking at it and cannot come up with any word for it, yet I know that its table, la mesa and la table. So I’m standing staring at this piece of wood with four legs and I can’t articulate any nomenclature yet I know 3!! I know three names for this object yet due to the neurological issues I can’t spit it out.
I have to have another dose of anesthesia and I’m thinking about that in the back of my head but I’ve made peace with whatever happens because God is in control and all is well. Sure I get frustrated when I can’t remember la mesa, la table or table, but at this point I’ve learned to point and laugh. My wife has learned to help when I need it, but give me more time to think of the word on my own. Sometimes it comes to me, sometimes it doesn’t. The people closest to me understand and anyone else doesn’t need an explanation, but I usually give them one because I get flustered.
I sit with a million things running through my head but I am at peace because I know all is well. I know that I only have to handle what comes my way today. I can do that. I can handle that. Piece by piece we are moving forward. I may not get all the answers to all the questions, but I get what I need to handle today and if not maybe I’ll get it tomorrow.
Anyone else need like 3 more weeks to get ready for Christmas? I think I do! Actually my beautiful wife is AMAZING and got the rest of the gifts this week which was awesome because with the doctors appointments, rain and funeral I’ve been one busy chica! I have always been a procrastinator, I remember as a child my Dad telling me about my Science Fair project the importance of doing a little bit each day so it wouldn’t pile up on me at the end, and staying up very late the night before it was due….Of course I also remember staying up to the wee hours of the night typing term papers in college too….so maybe I never learned that lesson. Of course the fact that we still didn’t have all the Christmas present bought until last night….well we have been very busy and a lot has been going on, wait that just sounds like an excuse for wait for it…wait for it….procrastination!
I keep telling myself that I will be better next time, and get stuff ready ahead of time and somehow at the last minute I’m running around like a chicken with its head cut off, which in case you are a city person and never have seen it happen, they really do do that! It’s not just a saying! I even try making a list checking it twice just like Santa Claus, but somehow I can’t handle it for a small group, I don’t know how a guy handles it for billions of people. I bet Mrs. Claus is exhausted by the time New Years rolls around!
Yesterday I spent time with both of my siblings and my niece and nephew which is was really nice to spend time with all of them. My niece is a trip and she really reminds me of my sister when she was little. My nephew will be one soon and he is into everything and makes me laugh because he kept handing me this or that, then he would come back for this or that. My niece got a plastic workbench so my nephew had at one point given me a plastic hammer so I sang “If I had a Hammer” by Peter, Paul and Mary. He really liked that, and so he kept giving me the hammer and if I didn’t sing, he would take the hammer and give it back to me like okay SING! So I would sing and he would dance. It was really cute, and I realized that I didn’t remember all the words to the song, so I am going to have to look it up again, learn the words so next time I am better prepared.
Christmas is tomorrow the day we celebrate the birth of Christ. The real reason for season. Remembering that there was a small family traveling to be counted and there was no room in Inn, so the babe was born in a manager in the stable. The shepards who were keeping watch over their flocks were approached by an angel who told them of the good news and sent them to go find the baby. This child was the son of God born of the virgin Mary who would die on the cross for us. Tomorrow is a celebration of life, joy and family.
This is the point where I think my wife is talking to me and it’s not some just random dream….. so I respond.
“I can’t hear you what’s wrong? It sounds like something about a raccoon!”
So I take off the sleep apnea mask and I repeat what catalog? To which I find out that my wife who has been trouble sleeping the last couple of nights was dreaming about a Virginia Slims catalog….why she was dreaming about that not quite sure. So I know feel bad that I have awoken her from her dreams, so we go back to sleep. Well I lay there and lay there and lay there and now my sleep issues have kicked in. I typically can sleep for a stretch, but then once I’m up, I’m up, well apparently my body felt like I had slept for long enough that it should now be awake.
So after trying to fall back asleep for 20 minutes I get up. I check the info on my machine I’ve slept for 5.7 hours…YIKES! I’m hoping that I can go back to sleep here shortly, or even take a morning nap because I can tell you that is not enough sleep for me.
The other thing I noticed is that my leg is sore which there is a fine line right now because I have to be aware of different possible blood clot symptoms, but not cry wolf. Well my leg was spasming and hurt, and I my heart rate was up, but I don’t want to go to the doctor unless I have some other reason to believe I need to because I don’t want to be seen as a worry wort. There is this fine line between noticing changes and monitoring everything and going to the doctor for every ache and pain.
So for now I sit by the computer with the cat curled up next to me which is weird because she is not a lap cat, but I think because I’m up too early I took her spot and she’s getting back at me! hahaha and I’m drinking my water because it’s always important to drink water, and hopefully I can go back to bed in a bit and get some more rest.
A forum that I was reading asked an interesting question… “If you could rid yourself of one chronic illness which one would you get rid of?” Many people posted I would get rid of this one or that one. Most chose the one that causes the others which makes sense. I read the question and I thought the back pain first and then I thought maybe the neurological issues, but then I thought well those are supposed to go away at some point so I don’t want to waste my magic wand so yes the back pain. Then I thought no maybe I need to get rid of the arthritis. The arthritis has been causing issues so maybe now that the back pain has a solution I need to get rid of the arthritis and the more I thought about the question the more I realized there was not an easy answer!
So then I decided maybe I could just save the magic wand and decide next year! I mean they didn’t say I had to decide NOW. I could wait see what shakes out and then think about what really annoys me the most and in the coming year make a decision. See most people given a magic wand could choose one illness to get rid of because they only have a few major health problems.
Last night I was on Facebook and saw this picture of a baby Chewbacca and the meme said that if heartburn during pregnancy meant the baby was going to have hair than they must be giving birth to a baby Chewbacca and I LAUGHED. I laughed so hard the cat got scared and ran away, like hid! I was laughing and laughing and Jenna looks at me because I’m laughing so hard tears are running down my face, I can barely breathe. She’s asking what I’m cackling over which of course makes me laugh all over again, and then I see the picture of baby Chewbacca and the baby bottle with the bite out of the bottom and I start laughing. So I finally put the laptop down show it to Jenna and say I thought of my sister! Which of course got Jenna laughing. My sister had terrible heartburn with her first pregnancy and my niece had a full head of hair when she was born.
The cat survived, she came back eventually, you would think she would be used to me laughing at this point. Every once in awhile I get to really laughing uncontrollably and she doesn’t like that. I find laughter is good medicine which is why I like to joke. I joke a lot. I joke about everything I possibly can because I can and I think it’s a gift that I should share. When I was in high school I took drama and the teacher was amazed at how well I did at improv but it’s because I like to be random and silly and I can think on my feet.
So with this blood clot and everything else that is going on it’s hard right now to make judgement calls..well for me at least. I like black and white. I like yes and no. I like 0 or 1. I like binary. I like easy choices. I like to cut and dry choices with no fuss or muss but last night there was muss and I don’t deal well with that. I have a head cold. Which normally I wouldn’t worry about I would suffer through like I normally do, but right now I have this large blood clot sitting on my lungs so it complicates things.
Plus I am asthmatic so if things weren’t already messy with the large blood clot throw into the mix that I am asthmatic and yeah I was ready to have a mental breakdown last night. Oh did I mention that I don’t like messy situations? Oh did I also mention I am sick and don’t like making decisions when its not black and white? So last night I got into some bad coughing fits that caused me to throw up which of course then posed the question do we go to the ER because I had already taken cough syrup with codeine in it like the doctor told me to, but I couldn’t take the next dose for a couple more hours. I was concerned that I was going to continue to throw up, and all the coughing and throwing up and made my heart race. So the question becomes do I want to go to the ER. UGH!! I don’t know if I want to go…well I know I do not WANT to go, the question is SHOULD I go. So we decide to give myself 10 minutes to see if I calm down, we check my pulse ox and my oxygen levels were really good. The coughing started to go down, the heart rate went down, and everything calmed down in that 10 minutes, but we also decided that if I had a 2nd coughing fit we were leaving immediately no matter what.
I hate all this. I hate the increased medical appointments, the blood tests, the changes in diet. The having to record anytime I have certain foods with vitamin K. HOWEVER I am alive. I am the girl who SURVIVED the massive blood clot. I lived to tell another tale and for that I am grateful.