The Wonderful World of Comorbidities

He makes EVERYTHING make sense. Even when it shouldn't. 

Hey there everyone, let me start by saying if my layout seems a tad messed up I apologize I am trying a few new things, and trying to work the bugs out, and I am not there yet.  So, I am sorry if things aren’t centered etc., bear with me and I will get there, I promise!  I haven’t blogged in what seems like forever, but it feels like we’ve kind of been going nonstop for the last I don’t even know how many months.  It’s like we’ve been on this crazy roller coaster ride for the last couple of years, almost since the beginning of our relationship really.  I guess what they say is true, if you can find someone to stick by your side through all your ups and downs, and just, well, just your MUCK then you have found the person that is going to stick with you through life.  Lord knows they deserve all the good if they can make it to the good. Some people worry they’ll never get to the good in their own lives, and that’s when they need to remind themselves that they have good in their lives EVERY day.  It’s up to us to look for it, to remember that, and to be aware of it. Even if it’s as simple as being able to cuddle up next to the person you love at night, or waking up next to them in the morning and having a cup of coffee over breakfast with them in the morning. Taking your dog for a walk, or just being able to walk outside at all and see the sun, or see the stars. Each and every single one of those things are worth being thankful for.  Don’t get me wrong, I’m not trying to preach at anyone about being thankful, because lord knows I need reminding probably more than anyone. I get frustrated, angry, overwhelmed, and just straight up pissed off sometimes. I get mad that it sometimes seems like we never get a break, that we get one set of bad news after another, and that we are just never going to be done with all the damn doctors and all of the damn tests. I know that we will though, someday. And sometimes I have to realize that it could mean the end of living if we were at the end of the doctors’ appointments. That’s not something that we want to happen anytime soon! Instead, I try to simply be thankful that hey, I get to wake up EVERY morning, and I get to do so with the man of my dreams, my wonderful husband that loves me, the man that learns just as much about every condition I am diagnosed with as I do.  It says something about the type of man he is that he goes out of his way to learn as much as he can so that he can be there for me, so he can help me, and so that he can understand what I am going through daily. It’s a wonderful feeling knowing that someone actually loves me that much.  Each new diagnosis often feels like a slap in the face for me, and cause me to become depressed and get in my own head so to speak.  I must remember though that it’s not just me, I’m not in this alone. He’s here with me, and my reactions affect him, and  when I allow myself to get upset and depressed, it of course does the same to him. I’ve also learned through my amazing counselor to understand and acknowledge how frustrating it can be for him to see me that way and how much more frustrating it can be for our loved ones and care givers when we want to shut down, because it feels like we are shutting them out, when all they want to do is help us, and they can’t, there’s nothing they can do but be there for us and we aren’t allowing them to do that for us. Ugh! How frustrated they must become! So, for all of my Chiari Sisters, remember, let your loved ones in, let them be there for you, talk to them, and don’t shut them out. Communication with our spouses or significant others is vital for our own peace of mind, let alone theirs! 

Now, the point of me saying all of this is because of my own up and down health, and having to be able to talk openly and honestly about it with not only Shawn, but with our families.  We really thought that after my brain decompression surgery last year, there wouldn’t be any other surgeries coming up for quite some time.  We thought wrong. Ugh. I think we should have known better to think that anything was going to go that easy for us.  From that beginning things haven’t been easy for us, it’s often felt like we’ve been hit with obstacle after obstacle, somehow always finding a way around it.  Personally, I think I owe that all to my husband, to having such a strong ally, to knowing that someone always has my back, is always on my side, and is always there to hold my hand and lead me through the darkness. There are times for everyone when you feel like you’ve lost yourself, when you feel less than, and when you feel that way, it’s important to have someone that you can depend on to pull you out and make you remember that you are not less than. You are not less than yourself, you are not less than your condition, you are not less than your diagnosis’s, and you’re not less than YOURSELF! I know how freaking hard it can be to remember that sometimes, I struggle with it myself more than I care to admit. I want to feel like my old self, to be able to get up and go to work and be able to work ten to sixteen hour days, I want to be able to clean house all day, or bake all day, or work in the garden all day. I miss being able to do all of the things that I used to do, but here’s the thing, I’m not the same person I used to be.  I need to remember that, and be thankful for that.  I need to remember not to push too hard, just when I’m trying to get back to the person that I used to be. Then again, I didn’t necessarily always like the person that I used to be, in fact, I don’t think that everyone in my life always liked who I used to be either. I think it’s important to remember that we aren’t meant to always be the same person throughout our lives. That we are meant to grow, to learn, to become better versions of ourselves. Even if that means doing nothing more than laying on the couch and taking a nap with my pup and my hubby at the end of a day of doctors’ appointments because just getting dressed and facing the world for a few hours is enough to wear my out.  As you can see from the picture below, my hubby likes to snap pics of my pup Lulu and I when we are innocently napping away.

So, the point of all this rambling?  The fact that my health isn’t as good as we’d like to believe it to be at times, I underwent emergency laser eye surgery for glaucoma this last Monday.  Yeah, freaking glaucoma of all things. Ugh.  We had been told at my last eye appointment on Feb 21^st that my eye pressure was increased, and that I had narrow angle glaucoma.  So, at this appointment on March 20^th, we found out that the pressure in my eyes had doubled.  Doubled in a month. So, the appointment with Dr Sieck went from being a consultation straight into surgery also known as a Laser Trabeculoplasty, and now I must do eye drops apparently for the rest of my life or some craziness. Cause ya know, if it’s not one thing, it’s clearly another. Lol I must laugh, because sometimes if I didn’t cry about all the craziness that is our lives, and my health, well I’d cry.  And if I started crying, I’m sure there would be times that I wouldn’t stop.  That crap is not going to solve a single damn thing.  Nothing. Instead, I simply try to find out everything about each and everything that I am diagnosed with, as I’m diagnosed with it. Sometimes this is a good thing, sometimes this is a bad thing.  One thing I know is this though, I like knowing as much as I possibly can about everything I have, because then, whenever I see a friend that is diagnosed with one of these many freaking things, I can provide them with some sort of levity regarding the situation.  I have found that especially for myself, and my husband, that finding the humor in whatever situation we are thrown into, is the defining moment on how we are going to get through the entire situation, no matter what it is.  We should be able to laugh at whatever it is.  Every single doctor looks at me like I’m crazy whenever I start laughing at whatever they are telling me, and I get it, I look like a loony tune, and yet, I have to find the presence of mind to explain to them, that I MUST laugh, and that I SHOULD be able to laugh at all this crap, or I will lose it.  I will lose it because it’s literally one diagnosis after another. I explained this to Dr Wadsworth the first optometrist that I saw at QMG back in February when I simply thought I was going in for a new eyeglass prescription and instead she told me I had narrow angle glaucoma.  I also explain this to Dr Sieck this past Monday when Shawn and I went in for what we thought was a dang consultation and were told I’d be having eye surgery that day.  It’s what I do when hit in the face with bad news these days, I laugh instead of cry. So, if you are anything like me you know very little about glaucoma, so at the end of this blog there will be some informative pictures, and links to give you more information if you desire to learn more like I did. Shawn and I keep thinking that at some point we are going to get a break, we are going to get a break and can come up for air, we are going to be able to have a month, or hell maybe even a week at some point with ZERO doctors’ appointments. Can you imagine it?  I sure can’t.  Wow.  I know that I may sound pessimistic to some, and I honestly don’t mean to, I am just trying to be honest, as honest as I can be, which is what I always attempt to do in my blogs.  When it comes to my Chiari, I feel like we manage that condition itself quite well, but then you throw all these dang comorbidities on top of it, and well it can just get overwhelming at times.  I do feel lucky though, I always remind myself that I know other Chiarians, and other people in general that have it so much worse that we do. That we are lucky, we have doctors that so far have understood each individual condition and disease, and that I have a good team of doctors that communicate well, that make sure I get sent to specialists when need be, and that if it’s out of their own scope of expertise, well they find a doctor they trust to send me too. 

Case in point, my local cardiologist, Dr E, that I LOVE, felt that he had done all he could do at this point with my heart condition so he said the next point is a cardiac ablation, the medication is no longer doing its job.  Since he doesn’t personally do those, he sent me to a doctor in St Louis at Wash U that he trusts, a Dr Cuculich.  That doctor wanted to try another medication first, so we tried it, it didn’t work, and in fact in Dr E’s opinion it made things worse, so we are moving forward with the heart surgery.  It’s now scheduled for June 1^st.  It could be moved up if Dr E has his way, but for now, that’s when it’s scheduled.  So, what exactly is going to be done and why you might be asking yourself, hell I know it’s what I’m still asking myself, and well, I KNOW what’s going to be done. So, I do understand the confusion and the; excuse me, but didn’t you just have surgery for xyz, and now you’re saying you need surgery for something else?  Believe me, it seems excessive even to us, and if there was any way around it, we would have found it by now. So, here is the basic definition or a cardiac ablation broken down for you; A Cardiac Ablation is a procedure to scar or destroy tissue in your heart that is allowing incorrect electrical signals to cause an abnormal heart rhythm.  Diagnostic catheters are threaded into your femoral arteries and through your blood vessels to your heart where they are used to map your hearts electrical signals. Sounds kind of crazy I know, I am not a real big fan of them cutting open my femoral artery to get to my heart, but I much prefer that to a scar down the middle of my chest, at least I’ll be able to hide scars in my groin area. Dr E initially thought I had just A-fib which affects the electrical currents in the upper part of your heart, however after going to see Dr Cuculich who is a Cardiac Electrophysiologist, we now know that I instead have PVC, which unfortunately cannot be made better with medication, and after years of trying, is getting worse and worse, and they’ve decided that it’s time to move forward with the ablation. Blah.  Yes blah, I have no other words for it at this point.  I know that we’ll get through it, because well, that’s what we do, we get through each and every health issue that is thrown at us, but it’d be really nice to catch a freaking break at some point.  Sometimes I think, man there has to be a reason we get hit with so much, there has to be a lesson in all of this, there has to be a point to all of this, and other times I think nope, it’s just my crappy luck that I’ve always had.  I look at my husband during those times though, and I know I’m wrong, because no matter how bad I’m feeling, no matter how bad things may seem, I did something in my life right to deserve this amazing man.  This man that advocates for me as hard as I do for myself, and that calms my mind when it goes into overdrive with worry about how we’re going to get my insurance to pay for another medication let alone another surgery, and calms me when I get scared that I could lose my health care.  I wonder if people think about the fact that this is a very real concern for us, we are limited to what they will cover to begin with, and then with my growing health issues, they keep trying to limit us even more.  We are already paying out of pocket for medications that a year ago, they would cover, and having to pay out of pocket for pain medication that they would cover before and won’t cover now, simply because I refuse to go on something stronger.  I’m sorry that I don’t want to go on morphine and hydrocodone and be able to function even less in my daily life than I already can.  Medical insurance never ceases to amaze me.  Then to top it off, I was denied a second time for my disability last year, and we’ve recently found out that it’ll be until after summer before we even go before a judge for a hearing, although it has FINALLY been assigned to a judge at least.  I honestly don’t understand how I am fighting my behind off just to get a measly amount each month, when I’ve worked my butt off since I was old enough to work, and then I know people that have been approved for carpal tunnel syndrome.  Don’t get me wrong, I’m not faulting those people, or saying that they don’t deserve it, I’m simply saying that our system is so beyond broken.  I know other people with multiple, I’m talking 10+ brain surgeries that cannot get approved for disability either and it simply doesn’t make sense to me.  I guess that is the government for you.  

               

 Anyway, I am sorry for all of the ranting I have managed to do in this blog, I know it has been a lot, and I am not even sure I got my entire point across, but hey it’s what I do.  I guess my main point with all of this; lean on your loved ones if you are chronically ill, lean on your spouse, significant others, siblings, and family as a whole.  I would be lost without mine.  I know I might complain about my siblings sometimes, okay a lot for those that know me, but I would be truly lost without them too.  They are sounding boards when I just don’t want to drive my husband any crazier, or when I know he just needs a day off from hearing everything, or thinking about everything, or having to not only be my husband but my caregiver.  So, while we are busy taking care of ourselves, make sure you are thinking of your caregiver, and that you are doing whatever you can to take care of them too, even if it’s giving in and watching something on TV that you might hate, but they love, and it means you get to see them laugh and smile.  Believe me, that alone is TOTALLY worth it.

        So, in closing please don’t forget that we are already in planning for this 2017’s Conquer Chiari Walk Across America, Quincy Walk.  We are looking for sponsors and we are looking for donations for our raffle, and we are looking to get as many people signed up for the walk as humanly possible.  I would LOVE to double last year’s numbers.  I know that is probably unrealistic seeing as this will only be our second year doing the walk, but hey, I can dream, can’t I?  So along with all the glaucoma and ablation crap below, you will find links to all of this year’s walk info!  Please share it out, get involved, volunteer to organize with me, and heck, help get sponsors or whatever you think you’ll be good at.  There is no single act too big or too small, remember that as you are thinking of how to help. 

             

   Until next time folks!   I promise to try and do better and keep this thing better updated, at least monthly or semi-monthly at least.  As I always say though, life happens, and even the best laid plans go astray.  I hope you are all well, and as always, if you have ANY questions, ASK AWAY!!!! Love to you all!!

 

Information from QMG on Glaucoma
Laser Eye surgery I had for my Narrow Angle Glaucoma
Best video we found to explain the cardiac ablation I'm having.

CCWAA 2017 Quincy Information!!!!

Quincy's Facebook Page

CCWAA Quincy Event Page!

Register for the walk HERE!!