Monthly Archives: August 2016

Finding Zen

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.

I love YOU

Can you look yourself in the mirror and say “I love YOU!” and then REALLY mean it? Have you ever really even thought about it? I mean we turn to our children, our spouse, our sisters, our brothers, our parents, aunts, uncles, grandparents, friends, etc and say “I love you” all the time and sincerely mean it. What happens when you look in the mirror at yourself? Can you look at yourself and really love the person staring back at you?

I recently came across a quote I wrote about scars that said “A scar is a tattoo with a better story.” Now this was written before my 4 spinal surgeries and I had to chuckle because all of my scars that I have now do have good stories attached to them an I do still feel that way, but BOY I had no idea when I wrote that 6 years ago what my life had planned for me! However I’m not ashamed of my scars. I know they each come with a story that is better than my tattoo. Now my tattoo has a good story too, but somehow my scars from all these surgeries seem to top my tattoo story now.

Someone recently asked me if with all the scars from all the surgeries if I would be in a one piece bathing suit now, and I go NO! I’d wear a bikini I’m not SCARED! I’m working too hard to lose all this weight to hide in a one piece! They laughed. Being comfortable in your own body is important. We have too many outsiders telling us we need to look like some airbrushed model, but the truth is we need to love our self.

There is nothing wrong with self improvement. I am working on losing weight so I am at a healthier weight, but I can still love myself. I do not need to hate myself in this moment. I can love myself and still lose weight. I can love myself and understand that the scars tell a story of where I have been, the journey I have been on. We often say we need to remember history so we don’t repeat it, when talking about our own history we need to remember that we don’t have to be stuck in the past.

There are things we might not be proud of, things we might wish didn’t happen, but they are in the past. We can honor those events without being stuck. We can honor ourselves and still seek self improvement. We can love ourselves and not be stuck. We can look in the mirror and say “I love you” and MEAN IT! I often use humor as a way to deflect my emotions, but I do love me. I know I may not have the easiest life, but I am proud of where I am. I know I have dealt with some really hard medical decisions, but I have overcome them and I am learning how to navigate.

I can look in the mirror and love who I am. I can look at my scars and not be ashamed. I have a tale to tell and not be ashamed of the tale. I am continuing to move forward and I want to remember that each time things don’t go the way I expect it’s just another plot twist! So today go look in the mirror and say “I love you!” The trick is to keep doing that until you really mean it!

heart

You must eat broccoli!

I’m the kid who gets excited to eat broccoli! So things are finally settling down after surgery, I’m starting to fall back into my normal routines. My neck still itches a bit from the allergic reaction but not NEARLY as much as when the skin peeled. So I went for my 2nd INR check and my INR was TOO HIGH! So I was told to eat 1 serving of a high vitamin K food to help bring it back down, so I had steamed broccoli with my lunch and it was FANTASTIC! You forget how yummy it tastes when you haven’t been able to eat it for awhile!

So with the blood thinners vitamin K is the antidote so when I went out of range on the top they had me use the natural antidote to help bring it back down and then I go back next week to have another check to make sure that things still look good. We also adjusted my dosing schedule as well since it rose so quickly and we want to make sure that I am in my dosing levels. So this is what I have not particularly liked about being on blood thinners is the blood checks and the diet restrictions! So we’ll see how this week goes, I’m hoping that the one serving did it and we’re back where we’re supposed to be.

I’ve been really tired and not had the time to take the proper naps this week! I’ve had a lot of appointments for check ups and trying to get things looked at to make sure I am healing properly. There is also that fine line between making sure I am up and active so that I don’t get a blood clot and resting and healing post surgery. The struggle is very real! I have been trying very hard to be up and moving around as much as possible, but also listening to my body and not over doing it because I am healing and I need to rest too but it’s hard because I do feel like I’m being pulled in opposite directions.

I did get the all clear to start physical therapy again and I am back on the schedule soon. I am looking forward to being back and getting back in shape with that. I no longer have to wear my neck brace 24/7 so that is a huge plus as well. I am enjoying the freedom to carefully move my head around again.

My neck does not click the way it did before surgery so I see that as a positive, but when my neck gets tired I am still putting the brace back on for support. I like the freedom of choice of wearing it. I like having it when I need it, but not having to wear it all the time like before. Life is good and we are moving in the right direction again!

Smiling through the pain

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!

NAPS!

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!

Gratitude

When was the last time you stopped and made a list of 5 things you were grateful for? So often in the hustle and bustle of our day we forget about all our blessings we have, we are surrounded by gifts from God. I know especially on bad days we can get distracted from our attitude of gratitude really easily and focus on all the negative but those are the days we need to really stop and think of 5 things we are grateful for the most!

I know that with my surgery I have been really pre-occupied with everything surgery for the last couple of months and my wifey has definitely felt my stress. I knew my surgery was going to go well, I had no doubts about that part of it, but I was still stressed over the details. I am a very detail oriented person and I like to have all the ducks in a row and when one duck is not in that row I get out of sorts.

So I challenge everyone to try this week and take a few minutes to list 5 things you are grateful for everyday. Keep that attitude of gratitude alive and remember that life is short and you are too blessed to be stressed!

Tooblessed

Spoiled kitty!

Creme (the cat) is spoiled rotten. We all know this, we all accept this, we all accept that we have played a role in her becoming this way. This morning I was in the bathroom giving myself a blood thinner shot in front of the bathroom mirror and she decided that she wanted fresh water from the sink.

CremeSink

Well I was using the mirror so I was not so happy when she jumped up on the sink and then tried to nuzzle the hand that was busy giving myself the blood thinner shot! NO KITTY! GET DOWN CREME! MOMMY IS BUSY!! She was not happy that I was upset because a) all she wanted was some love b) all she wanted was some fresh water from the sink c) she did nothing wrong. So she hopped down with a disgruntled meow and laid in the kitchen floor glaring at me as I finished my shot. She wanted to make sure that I knew of her displeasure at being kicked out of the bathroom.

I realize that she doesn’t understand that I had a sharp object in my hand and her nuzzling my hand was not good for me, but sometimes you just gotta do what is good for you. She’ll get fresh water later. The Earth does not revolve around her, much to her dismay. I now know why the Egyptians worshiped cats, I mean any cat owner I think understands when they glare at you…you know they mean business!

Creme will be 9 this year so she is starting to get up there in age, but she is a happy cat with quite the personality. She definitely makes her presence known to us! She also makes sure that I am well taken care of in my recovery period after surgery. Creme who is not normally a lap cat becomes more of a lap cat right after I’ve had surgery and you can often find her curled up beside me on the couch. She definitely enjoys my company whether she will admit that or not I can’t say, but she definitely does enjoy being around me.

 

Can we have a redo?

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!

Holy allergic reaction BATMAN!

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.

Hey sexy I like your neck collar!

So I’ve heard a lot of pick up lines in my life time, but today’s took the cake. So I was with my Mom and we had stopped by the grocery store to get my Dad a organic yogurt that only 2 grocery stores in the area sell, so we had walked through and picked up a few other items. I promised the doctors that I would be up and active after surgery so we wouldn’t have a blood clot so today I would walk a bit and then rest, walk a bit and then rest you get the picture. So we were checking out and I kid you not the checker tried to use my neck brace as a pick up line…..

Guy- So how long do you have to wear your collar?

Me- Oh I don’t know yet.

Guy-When did you have to start wearing it?

Me- I just had neck fusion surgery last Wednesday and if my back was any indication I’ll be in it for awhile…my back was fused 2 times once in 2014, then in 2015 and it’s still not fused.

Guy-WOW! Yeah I had to wear one of those collars for a class I was taking and we had to wear it for the whole class period and it was really annoying! You have to turn your whole body when you move, and he starts demonstrating for me (as if I don’t have first hand knowledge here….)

Me- Yeah it gets to be a real pain when you are trying to look down and you remember you can’t!

Guy- I bet! I don’t know how you have been able to keep that one on the whole time, did they at least give you a soft one too?

Me- Yeah I have a soft one to sleep in

Guy- That’s good I would hate to think you were trapped in that hard one all the time, at least you can switch between the two!

Me- Yeah, it helps

Guy-I hope the next time I see you, you are free of the collar, or at least in less pain. But no matter what I hope I see you the next time you come in!

 

Yeah there is friendly and then there is I want your number and trust me with the body language this guy was I want your number! Too bad he’s not my type! #Prettysuremywifecouldtakeyou!