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. 

Visible invisible 

A few close friends of mine have what the medical community calls “invisible illnesses”. Heart, hormone conditions, vitamin deficiencies, gastrointestinal stuff that you cannot see simply by looking at someone. These people often have to live by the spoon analogy, which I’m not going to go into here but if you’re curious and haven’t heard of it googling spoons and chronic illness should he sufficient to find the explaination. It sucks because these are people I love and care about who are frequently and repeatedly not given a fair shake because people don’t know any better. My frustration today stems from interacting with people who do know better and are still either do not care enough or simply do not give enough of a shit to make any kind of accommodation for people who might be a few spoons down. 

I have what is to me at least, a very visible scar on my neck that was not there less than 3 months ago. When I first went back to work and out into the world i tried to hide it more but it was just more time and effort than i am willing to put in on a daily basis. Due to the nature of my job in the medical field and their own nosiness my co workers know a lot about my condition and treatment. Lots of details and information shared but also apparently not a lot of shits given. Not really at least. For maybe the first two weeks after I was back I was given a little extra consideration and for the first 6 weeks i couldn’t lift anything heavy because they didn’t want to take any chance of me straining my neck. Apparently now despite the visible sign of my surgery less than 3 months old and the details I have to share in preparation for the upcoming ablation I am supposed to be fine. This pisses me off for a number of reasons more personal to my job having to do with people who never pull their weight. But also on several levels having to do with illness. Over the past couple of months I have been sick several times and had to miss days. It’s unfortunate and not what I want but it seems to me at least that would be something normal or even expected since they removed an organ from my body. And not just any organ but one that controls a lot of my hormone levels. Apparently this seems to be unacceptable to my co workers. A woman I work with does not like to call in sick. We have paid sick days so she would not lose anything to not be in if she’s miserable which this week you could see she was. After being hacked at and coughed on all week long i woke up Friday morning to my throat feeling like a cheese grater had run along the inside of it. So not wanting to potentially expose anyone else to this gross feeling i stayed home. I found out later that this woman who is likely a good portion of the reason that I got sick in the first place, felt the need to comment about my absence and how she was sick all week and hadn’t called off. She is a very two faced person and this behavior doesn’t surprise me. But it irritates me for a lot of reasons. I have had positions where you don’t get sick days. Where you better have a drs note no matter how miserable you are or sometimes you have to come to work unless you’re pretty much non stop puking. This is not one of those jobs. We try to be understanding and make accommodations because people get sick. Especially this time of year. And if she truly felt that she could work through her illness, that’s fine, good for her. I don’t believe that there are truly stereotypical cancer cases, I think everyone is different and everyone’s symptoms and abilities are different at different stages in their care. So while I might look and act great most of the time and I am certain in comparison to some cancer patients I look amazing, I am still a cancer patient with ongoing treatment. 

I feel as though I’ve lost the thread a bit here. Maybe there wasn’t much of one to begin with. Regardless I am angry. Maybe it all goes back to those spoons. I don’t have as many as I used to. I am hopeful that when my main treatment is finished that I might get a few back. But I guess I feel like everyone regardless of how many you’ve got up your sleeve, everyone could stand to be a little bit kinder. Because those spoons can be precious.