Heavy heart hypo

I feel as though today is frustrating. It has not been a fun couple of days being hypothyroid. Not that it’s ever particularly fun, but it’s been extra hard these last few days. I’m on antibiotics for a possible sinus infection that never really went away this winter and I feel like I’ve been snoring a lot and not sleeping well and feeling really cloggy. And my wife thought it was the being hypo just that but I really felt like it was more than that so when I went to yet another doctors appointment this week I asked them about it and she said my nose looked pretty rough so add another pill to the mix. And I don’t know if it was that or being hypo or what but I had to leave work on Friday I was so brain fogged I just couldn’t concentrate. And I realized that I had been doing something fairly important and I didn’t really remember doing it. So that’s no good and I told my boss that I didn’t feel right and I’d like to go home and my coworker told me she said you don’t look good and I said I really don’t feel good today. So I was supposed to work the weekend and that didn’t end up happening either they actually were able to find someone which was nothing short of miraculous considering when I looked no one was willing to speak up. So yesterday I tried to rest a lot. We mostly just sat on the couch and watched movies. Our brand-new dryer is not working right so we are going to have to call a repair man hopefully they can get it done before I have to explain yes go fix it and I’m gonna stand on the other side of the room so that I can see but you aren’t exposed to my radiation because that’s gonna be fun. 

I feel like the title of my blog today reflects dealing with my friends and family lately. Because I am frequently the person who is there for people. I am the person who people often go to for advice or for a shoulder or for whatever and I’ve noticed that it has happened less since I’ve been sick, people trying not to stress me out.  Which is both good and bad because in some ways yes less stress but in other ways it makes me worry because everything makes me worry about people and I don’t want to let anyone down. But lately I feel like people are struggling with dealing with me being sick. Not like they resent me or they don’t understand or something I don’t know, something like that but more like they’re scared and they don’t know how to handle it or what to do. And normally this would be something that they’d come to me and be like I don’t know how to handle this I don’t know how to deal with this or what to do with this can you help me? And it sucks because in this case the answer is no because this is my illness and I don’t know what to do. I have a couple of people who have said that they feel like they’ve been shitty friends because they don’t talk to me about my illness because they don’t know what to say or because they’re scared and I assured them or tried to that I don’t feel like they are crappy friends because they haven’t talked to me about it. Because after a certain point what do you say? How are you feeling? Tired, shitty, bored, scared, exhausted, impatient, frustrated, all the things and I still have cancer by the way. And in some cases I know all it does is make people feel helpless because they want to help and what can they do? You know people say if there’s anything you need and I know we have people who mean it and if they were here especially some family members,  if they were closer they would be here all the time and be on my butt and be you know wanting to know what was going on all the time and in some ways I appreciate that they are not closer physically because some days I just can’t take that. Some days everyone grates on me no matter how much I love them because I just want it all to go away. I feel like people are expecting me to have this huge sense of release or relief when the treatment or radiation or whatever you want to call it is over and I’m not sure that I’m going to feel like that. Because what I really want to hear is that the cancer is all gone and I don’t think that they get to say that my understanding is until I’ve had five years of clear scans. Five years is a very long time. And I think what they’ll probably be able to tell me is that my cancer is in remission which would be fantastic but isn’t really what I want to hear I guess. I’m trying to figure out something to do to make a marker or a I don’t know like a touchstone in my life to symbolize before and after or something. I’m looking at tattoos, which is something I have always wanted and I don’t have any and if ever there was a life event that called for a tattoo I think this could be it but I can’t find anything that I really like because a lot of the designs are very very feminine which there’s nothing wrong with that. However it’s not very me it’s very hearts and butterflies because butterflies are one of the symbols of thyroid cancer which is totally understandable but I don’t want a butterfly. Or heart or something like that. I have some song lyrics that I think I’d like to include somehow but I’m not sure and I just don’t know if there’s a way to toughen up a butterfly.  Especially since that’s not what happened my butterfly isn’t tougher it’s simply gone and I wouldn’t want something like a bloody something or you know what I mean there’s so many different styles of tattoos and things like that and I’m just searching right now. I’ve jokingly told our friends that I want like a party or a trip or something after everything is over to celebrate and be able to relax or something like that especially with this diet and no chocolate, which is just damn sacrilege if you ask me. What I would really love to do and we don’t really have the money for right now but is to maybe kind of almost like redo our honeymoon. It’s a lot colder up north now than it was in November and I wouldn’t want to go right now but when we went on our honeymoon the cancer, it was there and it sucked and we both knew that I would go back to work for like a week and a half and then it was time for surgery and so it wasn’t as relaxing as I would’ve liked,  I guess. Our wedding was beautiful and amazing and wonderful and the honeymoon was amazing and wonderful but you know there was almost this kind of shadow in the background of our honeymoon. I think probably because we had more time to think about it. The wedding day shone so brightly and was filled with people we loved and so busy that you can’t hardly breathe and just insanity and awesomeness. But once we were away from everyone it was easy for your thoughts to wander to sadder things whether I wanted them to or not. So I guess maybe I’d like a honeymoon part two minus the cancer that would be nice. I’m not sure where end today’s blog I guess if you are a friend or family member of mine who reads this please know that I appreciate everything that you do and have done for me. I love you all so much and I could never begin to say thank you for everything that you’ve done for us. ❤ 

Been a hard day’s hypo

Crappy last few days. Crappy week really. Some days it seems like I can’t get any more tired. How can I be more tired than this? When it feels like all my energy goes to keeping my eyes open. To say that I am not good at allowing others to take care of me would be a rather large understatement. I see myself as a care giver. It is one of the only things I feel like I am any good at. When I cannot do it for myself, much less other people I get out of sorts. A few years ago when I broke my ankle and spent a number of weeks in a cast I was very angry. And upset. I cried a lot. I didn’t know what to do. That situation was different from this. Physically other than my leg I was fine and it was so irritating that it restricted me so much. Having basic sanitation taken away from you sucks. I couldn’t bathe normally and going to the bathroom wasn’t an easy task. And it all happened in a finger snap when my knee gave out. I didn’t even know I had hurt my ankle at first. Thought it maybe got a little twisted when I fell. Nope, busted. Damn. This whole situation is different and in some ways the same. I don’t know that I am any better patient this time around. Better prepared maybe, sort of. 

I don’t think that anyone can ever really be prepared for the nasty C word to come out of their doctor’s mouth. Cancer. I knew, that it wasn’t a good sign that day when the Doctor himself got on the phone. Nurses and secretaries and interns can tell you that the results were normal. Maybe that’s part of why they make the big bucks, Doctors. Cause they don’t get to walk away from the hard stuff. They have to steel themselves through the tears and whatever else and try to get you to hear the, “yes but, this is what we’re going to do. Or this is where we go from here.” Once I cried my first and maybe second bought of tears that day, I had to do that. Calling my friends and family to give that news sucked almost as much as hearing it myself. Knowing that I caused people I love to cry that night was awful. And it’s not like there was anything I could do about it. There’s no good way to soften that blow. So many people. The first reaction is then, “ok what’s the plan. Or is there a plan? Or at least you have a plan now.” 

There is a list of phrases that I would like to recommend that you don’t say to anyone frankly but specifically to anyone dealing with illness: 

#1 At least it’s not ________

Really? 

#2 It could be worse. 

Worse than what? Oh I could have a shittier thing destroying my world right now? Gee that never occurred to me. 

# 3 If you’re going to have cancer, this is the kind you want. 

Cause I had so much choice in the matter. Not to mention, no! No one wants any kind! Every person who said this to me was mentally punched in the face. 

#4 My family member/co worker/ etc has/had a similar/the same condition and they’re fine now. 

This one happened a lot. And out of all of the things people said only 3 times was it actually my same condition. And those people actually had helpful, useful things to say because they didn’t offer me it’ll all be ok platitudes. 

#5 You will/you need to just kick its ass or the alternative calm version which is “it’ll all be ok” 

These are attempts at being encouraging or supportive. These bothered me because you can’t guarantee for me that it’ll all be ok, I really wish you could. And the ass kicking one pissed me off repeatedly because firstly no one ever said I wasn’t going to fight and fight hard, this is my life we are talking about here. But, that being said there’s no ass to be kicked. It’s sort of more like preparing for a battle but it’s going on inside your body. It’s a scary and complicated process, which brings me to the last phrase (at current), which is

#6 At least you have a plan now/ you know what to expect 

What? Having a care plan is a tenuous process that involves a lot of testing and waiting and balls being dropped and fragile dr ego and bullshit I have recently discovered. You must be your number one advocate. 

You know what to expect. No one knows what to expect from any kind of sickness or illness like this. No amount of reading or talking to people could prepare me for this. I looked up being hypo because I knew that I would have to be as part of the treatment. My wife looked into it. We have a number of friends and family who are medical professionals who put considerable time and effort into helping and researching and finding out whatever I wanted or needed to know. Nothing prepared me for this level of exhaustion effort. There are good days and bad days just like with most things but right now, I am struggling through brain fog to spell words right and trying to beat the exhaustion that is making my hands go slower and slower. Earlier this evening I broke. I cried all over my wife’s shirt because I’m just so frustrated and tired. And yeah I knew this was coming but there is only so much planning you can do for when exhaustion meets depression and illness in a huge trifecta of crap. I am lucky. I am not a lone. There is literally someone here to hold my hand if I need it. Today I did. I feel like the fog has stolen my point away again as it has done so in the past and probably will again. Planning and coping I guess. We do all we can. But you fight, the exhaustion, the indifference, the everything because it’s my life. 

Today just keeps on sucking….

Today has been really rough.  I knew it wasn’t going to be a great day to start with but it just keeps sucking. Yesterday I was home sick from work. I’m not sure if I’m just super hypo or sick or both. The actual flu and some nasty upper respiratory stuff is going around. So it’s hard to say. But I forgot my father was going to have knee surgery. Not that I can go visit if I’m sick but I feel like a failure as a kid cause I forgot. Might have something to do with why my sister was trying to get a hold of me last night but she didn’t tell me. And my mom slipped and fell and pulled her hamstring so she couldn’t be at the hospital with my father. And the drs changed stuff up on me again. So yesterday I got a call saying that the nuc med doctor decided to accept my numbers as they were rather than make me continue to wait or go for another blood test. So they moved quickly and wanted me to come in today to take the tracer dose and Friday come in for the scan. I said yes because they don’t really give you a lot of choice. So in this morning to the nuc med dept. Passed a room where I’m pretty sure I had an x ray done when I broke my ankle. Down a long depressing looking hallway to sign in and wait. It wasn’t long. They came and took me back and I had to sit in then kind of weird wide armed chair that they normally use for blood draws. Signed the paperwork to confirm that no, I am not pregnant and away we go. 

It doesn’t seem that imposing until you realize that in that container the height of a juice glass and the thickness of a softball is just a small glass vial the size of an insulin vial with one small gray capsule in it. Me and the capsule and a dixie cup full of water and it’s down the hatch. After that I had planned to go to work for a normal day but the tech who gave me the pill says “ok treat it like you have the flu today” Wait what? In my profession and most medical professionals having the flu is a big deal. You stay away from people, drink lots of fluids, can’t work with the public, etc. If I am radioactive there is no minium safe distance at work. We are in too tight of a space. I had checked with them repeatedly that I could work while I had the tracer dose for the scan and they said no problem and now this. Most of the people i work with are not of child bearing age but there are some younger girls later in the day. So i talked to my boss and he said no, if you have the “flu” you go home. So a lost day of work. I called the woman I had spoken with before and she said that it was a miscommunication and that what they mean by treat it like the flu is to have good hand hygiene. Wtf? That is not the same thing at all. I’m so frustrated. Like it’s my fault. Tell your tech to keep his mouth shut if he’s going to cause me a lost days pay. 

So I go home. I’ll work on some work paperwork and stuff since I can’t be there. Oh nope. In the grandness of this day my work laptop won’t charge. I think the charger is bunk, we don’t have another that will fit to reassure me of course. So get the old one all booted up and finally going and start to fill things out, nope. Have to stop. Have to wait 1-3 days for them to verify I’m who i am. Oh and in the middle of all this fun i managed to spill the glass of water that I need to be drinking tonight to remove the radiation all over my phone and 3ds and some important papers too. And then someone from the other Drs office makes my wife cry.  And all I want is pizza to make me feel better and I can’t have it. And so today has been pretty shit. I’m considering bed already and just hitting reboot and saying forget it. My wife made tasty food but sadly the day has just moved too far into the crap season to be saved by dinner. I think I’m just calling today a wash.