Month: August 2017

It’s Ok to be Mad

It’s Ok to be Mad

Some days all I feel is anger.  I’m mad because I have this disease, mad that I have to do injections all the time, mad that my life revolves around appointments, drug delivery schedules, power outages, medical supplies, drugs, insurance.  I get mad that my disease has prevented me from working in the field I love, and I get mad that my husband works his body and soul to the ground to provide for us because I can’t, but yet we still need insurance because the drug I need would otherwise cost over 1.3 million dollars a year. 

It’s a funny thing to mad at what amounts to nothing.  I’m mad at my disease, but I can’t yell at it, or hit it, or confront it.  There is no physical object to aim my anger at unless I aim it inward toward myself.  I get mad that I’m one very small person with no influence in the world, and that I have no way to make people see what it’s like to be a person with an invisible disease.  I can’t make the ones around me understand how much I hurt both mentally and physically, and I can’t tell people why I’m mad because honestly there isn’t really a good reason.  I just am. 

Every time I think I have this disease under control, and like I can take back my life again, something happens, and it’s like I am losing my life all over again.  Not to mention how hard it is hear that others have it “worse” than me.  Because lets be honest, no one person has it worse than another, but rather each person suffers with their own illness in a unique way that is either manageable or not for them.  So that makes me mad to, when someone thinks that I should be grateful for what I have and what I have not been through, because I honestly think that’s a load of bullshit.  I have every right to be mad about what has happened to me, the same as the next person.  I may not have rods and plates and screws in my body, but still live my life around this disease, and in that way we all are the same. 

So be mad, it’s ok, scream at the world, curse whatever god you believe in for giving you this disease, or whatever disease you have.  Be mad that you can’t do the things you want, or that they are hard, or whatever it is that others make you feel like you should just except.  Pound your fists into the ground, throw something, break something, run until you collapse if you need to.  Tell your friends and family you don’t want to talk to them today, and that there isn’t a good reason other than your just mad.  Take a mental health day from work, and stay in bed, snuggle with your pets, eat an entire tub of ice cream.  Get really high and watch dumb cartoons.  Do whatever you need to to work through your anger and madness.  Don’t try to run from it or bottle it up. Keeping it inside you will only poison your soul and ruin all the things that truly are good in your life.  Sometimes you can’t do anything to make it better, sometimes you just have to be mad, until you’re not anymore.   You have to ride out the emotion like a roller coaster until you finally have the chance to get off. 

In the immortal words of “Big and Rich” if your going through hell, keep on moving.   I doubt you would willing stand in the flames and let the devil torture you if you had the chance. 

Remember that no matter what you have been through, or what you are going through, it doesn’t matter if it’s easier or harder than what someone else has gone through, you have a right to be mad about it. 

“Trains, Oooo I love trains” – Sheldon Cooper

“Trains, Oooo I love trains” – Sheldon Cooper

If you have never had the chance to ride the train then you should definitely add it to your list of things to do.  Getting from place to place is always a question when it comes to painful diseases because one way or another your bound to be stuck on a plane, train, or in a car for hours.  So out of all the options for how to get from one place to another I would have to say that train is one of the best options I have tried.  To start off there is more leg room! Way easier to stretch out and keep you body from cramping and locking up to bad.  Second of all you can get up and move around in an aisle actually big enough for two people, no awkward butt in face moments when trying to get past someone.  Plus the whole experience in general is more comfortable being that there is more space for everything and bonus there is even a place to plug in your charger for your phone, computer, or even camera battery. 

I recently had the chance to take the Amtrak from Milwaukee to Chicago, and honestly I would do it again in a heart beat and plan to investigate into planning all flights from Chicago by way of train from Milwaukee.  There was no pressure with traffic and it didn’t matter what time we left because it takes the same amount of time no matter what the time of day is.  So forget having to add an hour for rush hour traffic, just get on and go.  There was easy access to bathrooms, and special seats with extra extra room for disabled persons, or those traveling with crutches or walkers. 

All in all the atmosphere of the train was much more relaxed than a plane or trying to drive in a car.  It really allowed me to just sit back and relax, type or sketch, and enjoy looking at the countryside going by.  The trip was only about an hour and a half which honestly was not that much more than if you were to drive, especially going into downtown Chicago.  What a blast, I can’t wait to see more and share it with all of you!

 

Always look for new ways to do things, that way nothing is out of reach!

Playing on the Water

Playing on the Water

For any person with a chronic disease, or rare disease, or anything causing ongoing pain, normal summer activities can seem like the most challenging types of fun.  You have to plan and plan and plan for something as simple as a boat ride.  Do I have the meds I need, did I bring the right equipment “just in case”, do I have to do anything the next day if I over do it, is there medical attention near by if something goes wrong, if there is will they be able to properly handle my condition?  This is just the tip of the question iceberg.  But the nice thing is, the fun summer activities can be done, especially with a little advice from someone who has already done it.  

I had a chance to go visit family on a lake up north for a few days.  This also afforded the opportunity to try out some new water sports.  I was always a fish, so being in the water is nothing new to me, and I had loved going tubing as a kid.  But in the last few years those things have happened less and less to the point of non existence.  So I was naturally apprehensive at the thought of getting back on the water to try the traditional summer sports, i.e water sking, jet sking, knee boarding, tubing and so on.  

There was all the normal preparation involved, make sure to pre-medicate with a good anti-inflammatory, have pain medication on had, assess current body statues for pain and points of tenderness to make sure everything is good to go.  I had been doing pretty good, nothing flaring at the moment so I just made sure I had meds ready for later and ice packs just in case.  

My first experience was with water skies, of which I have tried before and was successful at getting up and skiing. But to say the least it was really hard on my body back then and I suffered afterward.  This time I was prepared to be careful and not push myself if there was even a hint of over doing it.  Luckily I had calm water, so no worries about dealing with wakes from other boats, plus it was less hard on my knees to keep balance.  I got up right away, which of course I was super proud of, and was able to make it once around the small lake, another victory.  By the time I was done my back was a little sore from trying to hold every muscle tight so I wouldn’t fall, but otherwise okay.  After a break, some stretching and some water I had my first chance to try knee boarding.  This made me really nervous since I have osgood-schlaters in my knees, so kinda like tiny bone hooks where the doctor always hits your knee to check reflexes.  So naturally kneeling is painful for everyday activities but bouncing up and down on a board on the water seemed like an even worse idea.  But I wanted to give it a chance because you never know what you can do until you try.  I talked it over with the person driving the boat so they knew I might bail right away if it felt like it was going to be problematic.  Luckily and surprisingly it wasn’t!  Because of the high density foam on the board and more anatomical position I was sitting in, I didn’t put any pressure on the portion of my knee that I normally do and worry about.  Plus it was less stressful on my body overall and more comfortable being that I was closer to the water so If I had to bail it would be easy and less painful when hitting the water.  Plus I actually took a minute to try kneeling on the knee board on land before giving it a shot in the water which was smart since it gave me more confidence to start. 

In the end after two days and five rides I was doing pretty good.  I took a hot bath to sooth sore muscles, and dosed with my anti-inflammatory for a few days.  Not to much pain beyond what you would expect from a physical activity.   And I had a lidocaine infusion coming up so that was just good planning in case I did cause a flare the lidocaine would help prevent it from getting bad.  

In conclusion don’t limit your summer fun to the beach and sidelines.  Take a bit and figure out a way to do those summer activities that make summer worth having.  All you have to do is take a little bit of time and plan out how your going to try those activities.  There is nothing you can’t do with a little bit of planning and creative thinking.