Medications and misery

I wish I had a better excuse for being absent so long than "I've been beyond exhausted", and "my nerves have gotten too bad to hold my phone very long", but there they are. 

I feel like I should be documenting my journey of the last two months with new medications though. For those who have chronic illnesses, any chronic illness, medication becomes a part of your daily existence. Thyroid medication, insulin, blood pressure medications, antidepressants, etc. It doesn't have to be some big fancy rare disease. I believe the vast majority of older humans need something daily to keep them as healthy as they can be, so this is not unique to people with these debilitating chronic illnesses. Most people can relate. 

The thing that needs to be talked about more, by Drs and patients, in my opinion is how damaging and miserable medication changes and "trial and error" can be for weeks on end. Sometimes it's worse than the disease itself and you find yourself wondering why on earth you are doing this to yourself. 

For example, albeit a drastic one, in my 20s I had thyroid cancer. My thyroid was completely removed during two surgeries and I went through radiation off and on for almost 3 years. For those unaware your thyroid produces a hormone that regulates your metabolism, the energy with which your body functions. Each time I went through radiation I had to have close to zero thyroid hormone in my body. At that time 20ish years ago they did this by stopping your thyroid supplement pill, since I had no thyroid that means my body had none of this metabolism hormone. I would sleep 20 hrs a day, my hair would be brittle, my skin turned hard and bumpy, any food made me nauseous (and you must be on an extremely strict no iodine diet also), I was freezing all the time and I gained weight each time. 

Now what you may not know is that thyroid hormone takes minimum 6-8 weeks to adjust. Down or up, a little or a lot, you're looking at 6-8 wks minimum. Most people who have thyroid issues have experienced low thyroid numbers or high thyroid numbers. The thyroid test TSH is an inverse test- the more you have the less actual thyroid hormone in your blood. For most a low number would be a TSH of over 5, and a high thyroid hormone number would be less than 0.5 depending on the lab. They would get my TSH to around 40-50. They no longer do it this way by the way. Nowadays I get a handy dandy little shot that artificially raises my TSH to about 100, they take my blood to monitor the cancer markers to make sure it hasn't come back and then my TSH goes back to normal the next day. Isn't science amazing?! 

Anyway, so to get it out of my system completely you're looking at 3 or 4 months coming off of the hormone, the final 5 weeks being the absolute worst, then 3 days in hospital getting my radiation, and then usually "only" 2-3 months building back up to a normal level. These numbers move so slowly toward the end and have to be at a certain point so I would have to go in weekly then almost daily to see where they were, so they could say "ok this is low enough to give you the radiation let's go" ! I became quite close to my oncologist endocrinologist and his staff. 

So 3-4 months up, 1.5-2 months down, wait 6 months and start again. You can imagine the disruption to my life- I had to take time off university, leave my job, stay with my grandmother during the worst of it so she could take care of me…. BUT it wasn't the radiation that caused the disruption and physical misery. It was simply the medication. The medication that is extremely common in our population. My mom takes it, my dad takes it, my mother in law, my parents dog takes it for goodness sake. 

My point is that medication adjustments can be extremely difficult and sometimes worse than the treatment or disease themselves. 

So now in my next few posts I will take you through the latest adjustments and changes and what they have been like.

My world of fear and comfort

Right now is a time of such uncertainty in life. All people (well the smart ones) are actively afraid of sickness and dying, something most people have never really given a thought to. Healthy people keep hearing horror stories of people their age, their health, their similar life dying inexplicably. The "invincible age group" no one worries about normally is suddenly at risk and from a disease you can't see until it's too late. No one is safe from this one. 

The risk of serious infection is higher in people with chronic illness, as is the risk of severity, so it is an especially worrisome time for many people like me. But, in some ways, I believe, this is easier for people with chronic health issues than for the unfailingly healthy. See we are already faced with our own mortality on a startling regular basis, so for many of us it's just another thing to add to the list and another reason to stay in bed. 

But for those used to relying on their bodies to actually do what they tell it to and used to being basically invincible to germs, it comes as not only a mortality shock but a lifestyle one. Suddenly people are aware of what it means to not leave their house for weeks at a time by no choice or fault of their own. Suddenly they aren't able to just hop up and go do whatever they need to. Suddenly they get a small glimpse into what it's like to live inside in frustration and boredom. 

Only these healthy people have the comfort of knowing that they aren't missing out on life because everyone is in the same storm and paddling as best they can. They can commiserate with friends about the frustration and boredom and neverending uncertainty. That's where we differ. Getting a taste of your life coming to a screeching halt when the rest of the entire world is experiencing the same thing is not the same as it happening when the world continues on without you. Imagine it. When your kids and spouse aren't forced to stay home with you. When you know that your friends and family are disappointed and worried and carrying on without you. 

So as crazy as this sounds for someone like me, whose everyday existence hasn't changed as drastically as it has for most of you, this time has been oddly comforting. For the first time in 10 years I don't feel guilty about missing activities. I'm not constantly pushing myself through pain and fatigue just to not let my kids and my husband down, again. I'm not lying here thinking about the life I'm missing out on, what my friends are doing and thinking or what I'd be doing if I could just get out of this damn bed. For the first time in a long time I feel like the world and I are closer to being on the same page and my life of bedridden, activity limiting symptoms isn't so glaringly different. I can finally acknowledge my limitations without making others uncomfortable or skeptical or having them instantly turn into Drs who can cure me. I'm not feeling pressure to say yes to doing things when my body is screaming no. I can commiserate with the rest of the world for the first time and they can commiserate with me! I have to say that part is kind of cool….

Mind games you can actually win

M, B and I spent this afternoon at the small tide pools made from lava rock at the South end of Kailua beach. It's a serenely active and beautiful place as it seems they all are. We went today so our animal, bug, all living thing obsessed 6 year old boy could hunt for crabs, snails, urchins and anything else he could find. He even found a centipede today.

I grabbed my chair and my bag with book, meds, snacks and sunscreen that goes everywhere with me and planted myself at the edge of the rocks to watch them climb and hunt while I listened to the waves as I read. 

Some days that's my ideal activity, some days it's good because at least I'm participating in the periphery of my family's lives, an observer, but today it just wasn't cutting it for me. This happens and many times I can't do anything about it but wish I could participate and be grateful to at least not be in bed. Today wasn't one of those days. But, I wasn't entirely sure I wouldn't get stuck halfway around the point and not be able to get back, so I broke a pain pill in half (important information for later) and read for about 15 mins before I finally just said "screw it" actually out loud. Though maybe in more colorful language for those who know me well. 

By now M and B  had hiked the rocks along the shoreline around the point and out of sight. So I followed. It wasn't an extraordinary effort or particularly difficult walk/ rock climb just one of those things my knee jerk reaction is to say no to because it's been so many years of not being able to do active things. I've been conditioned over time that it will be painful, debilitating for days after, too difficult to even finish, I'll hurt myself even worse with my deteriorating joints, yadda yadda. I'm sick of it, but it's life. 

But today over the rocks, and around the point I went, damnit. Nothing overly exciting to report for the average person, but things like this carry much more weight with me than with the average person. I have no injury or even increased pain to report. 

After a couple of hours a the tide pools and beach, we decided to spoil our son with McDonald's because his big sister was at a playdate. My husband drove the 5 minutes it takes to get there on our way home and in this short amount of time I was vividly and forcefully reminded of my (pre-quarantine) routine and requirement of never taking

pain meds and being in a car too close together in time. Holy nausea Batman. 

See my lupus med interacts with my pain med and makes me incredibly susceptible to movement and dizziness. On land it's generally easy to mitigate or even unnoticeable, but in a car it becomes an extreme level of "car sickness". And when I say extreme I mean "leapt over my friends toddler on the way to the bathroom once as I ran from my car into my house as soon as I pulled into the driveway leaving my daughter in the car to bring in the rest of our stuff" extreme. Today that extreme led to asking for a large empty cup at McDonald's to throw up in and walking briskly from the car to our bathroom when we got home. It is a 4 mile drive that took 15 mins including the drive thru.  

BUT, the lesson here that I learned is that all those times people and psychologists tell you to "turn around negative self talk" and "positive self talk is important in mental health" but "you need to practice it" are totally right! Who knew? I've been making an effort to practice this for years, ever since a psychologist friend told me many moons ago to have compassion for myself and to "never say anything to yourself that you wouldn't say to your friend".

As I literally sat on the floor of my bathroom assessing a second wave of nausea and vomiting my first thought was an unhappy "this is the price I have to pay for wanting to spend time with my family doing something fun and active!?" and my brain almost out of my control said "no, you GOT TO climb on rocks and hunt crabs today with your amazing 6 yr old son before your body gave up, because let's face it- it could've easily and has happened on a day where nothing fun preceded it. At least you got to do what you wanted today". 

So I guess it works. This was the first time it happened so quickly and automatically so we'll see if it ever happens again, but it was kinda cool. 10+ years in the making but cool nonetheless. Trust me I was as surprised as you are. 

**Addition- a few days later I have decided I just cannot tolerate the lupus med constantly causing this so I am stopping it. We'll see in 3 months how my kidneys feel about that! Fingers crossed!**

Fantastically overexerted and sunburned

**this is a post from a week ago that I forgot to post!**

Today I probably overdid it. And it was fantastic.

I proved to myself I could do something active with both of my kids on my own. I met a group of other moms with young children who were fun and kind. I spent 5+ hrs at the beach. I remembered why we moved here. All in one day. 

It's almost harder, emotionally, having bad days here. When I get into the blackhole of a flare up that seems neverending doubt doesn't just creep in, it bulldozes its way through my heart and head. 

"Why did we move here if I'm still stuck in bed"

"I uprooted my kids and husband's entire lives for nothing"

"This was our last hope. If I feel awful here it's never going to get better anywhere"

You get the idea. I believe I've mentioned it.

It's been difficult getting myself out of this spinning during the pandemic where I can't go out and do anything or enjoy friends to show myself "see- you can do more!" 

And having M home all the time, while incredibly fun, hasn't allowed me to really stretch my wings and see what I'm capable of without his strength and unwavering ability to take care of the kids when I can't. The quarantine has also really screeched to a halt our friend making efforts. I had as of this morning not been able to find a moms group online, or meet very many through the kids' school, and all moms need a group of mom's to laugh with, spend time with, complain with and depend on. A tribe they tend to call it. Or a village. Here it can be called ohana, but it all means family outside of blood. This mom time was something I valued even more than I realized in California. I had, and still have them, an incredible group of mom's who did nothing but make me laugh, help me when I needed it, trust me with their children, take care of mine and surround me with warmth and love no matter what kind of physical, mental or emotional shape I was in. Women's friendships are unique and difficult to translate to men, and mom friendships are another level of soul nurturing. That may not be the correct phrase for it but it really does feed and calm the soul to even just know these friends are out there supporting you. Whether it's extra snacks at the beach or park or just the text reminding you tomorrow is pajama day at school these friendships run the gamet of support and commiseration. Maybe it sounds dramatic to some but I can guarantee every mom has or should have a tribe, village, playgroup, mom ohana, whatever you decide to call it and wherever it comes from.

Today I got to be a part of a friends tribe here on island. It was so fun and relaxing and just felt like normal life again. Several mom's doing nothing but talking and laughing as countless kids were playing and swimming. 

I had no idea when I left this morning that the day would end up meaning so much to me for so many reasons. 

It felt so amazing to be able to do an activity- an active outdoor activity- with my kids without M. I reminded myself I am strong and capable. It was another postcard worthy day with clear waters and blue skies.

I got to hang out on the beach and in the ocean for more than 5 hrs, my happy place without question while my children made new friends and had an amazing day. I relaxed, laughed and chatted with a warm welcoming group of mom's and I got to meet so many new interesting people. And this day would not have been possible in California. For many physical reasons. Early morning, standing, sitting, walking, more standing, more sitting, moving through waves, walking in sand, talking to new people for 5 hrs, going to a new place I'd never been before with the confidence that "I got this", taking care of the kids (up, down, in and out of the chair, walking, lifting, feeding, constant awareness), loading and unloading the car, driving 30 mins each way; and still not being completely destroyed when we got home 6 hrs after we left. 

A lot to happen and positives to come out of what I thought, at 8 o clock this morning, was going to be a lovely but pretty ordinary day. You just never know when you wake up each morning what the day holds, do you? And even if you do know you don't always know what those things will ultimately mean to you.

Scientific assessment

Yes, I did keep a journal of my physical symptoms. I can look back and pinpoint days I felt certain ways but I will summarize.

First we spent a week in the cold mountains with our families for Christmas and it was spectacular. So much fun, laughter and love flowing. I had a few days of weakness and fatigue and I opted out of several activities. It was easy during this week, however, to take breaks in bed as our bedroom was directly off the living area and there weren't many expectations from the week other than relaxing with family. The one day we ventured into town the cold and short walk completely did me in and by the end of lunch I was shaking and tingling- a sure sign my body has had enough and generally my "lay down or I'll make you" warning from it. 

All in all that first week was what was expected and while really cold, the dampness and temperature changes of our old town we're not present. It may have only gotten to 51 during the day but it would still be 46 at night for example. As we've determined temperature change is worse than consistent cold by far. I was actually impressed by my body's strength in this climate, not great but not as bad as expected. But the heat was on and our shower had a heated lamp- these things make a big difference in sudden temperature adjustments. 

I will not count, but will make note of, the dizziness and nausea portion of our trip as that is a direct correlation to my meds and happens in every climate and state… so let's say the drive down the windy road was unpleasant. 

The second part of our trip was also filled with laughter and love and a whole lot more activity. We stayed in our old town with a good friend. Attempting to see so many people in one visit may have been overly ambitious. 

My body held up for a late NYE but needed a day on the couch the entire next day. I was able to drive one day to visit family, who had a preheated throw on the couch, but by the end the pain, dizziness and nausea were severe. 

I pushed through a day I shouldn't have to make a promised get together only to be flattened even worse the next day unable to see a dear dear friend. The rest of the trip- three more days- was incredibly low key couch bound and unable to see another dear friend for coffee as hoped. Both of those I regret and am heartbroken about. 

So for those keeping track I got about 9 really good days out of the 17. 

As for a symptom score: one thing I hadn't even realized was that the numbness and nerve pain in my left leg has pretty much gone away in Hawaii. It came right back in California again! Back to 4 pairs of socks on my left foot. I was also back to dreading showers because of the cold and needing Gatorade more for my blood pressure. I was unable to stay outside (as I can for flag football games here), I was unable to help much at the houses we were staying at, etc etc. 

It's not an accurate representation for my scientific mind because the kids weren't in school and didn't need a schedule, my friends came to me for the most part- couch, PJs and all- and I had no real obligations and responsibilities except to things I really wanted to do. That adrenaline rush always really helps. But for an overall trip it definitely affirmed that I am better here sometimes a lot and noticeable, sometimes only in some ways or slightly. But even just 10% is better right? Hopefully that realization will help assuage the overwhelming mom guilt when it pops up...

So I can safely say we were all happy to be back in the warmth, but none more than my body. 

The unexpected crash

For two and a half weeks we have been surrounded by love and friendship to the point my heart could burst. Leaving California was only difficult for me because of  the incredible friends we were leaving behind. Never a judgement for hanging out in pajamas all day, lying on the couch zoning out on movies, unable to go out, in bed during a get together, or unable to even see them on this trip when my body completely gave out. Never a judgement for anything ever. In fact the opposite is true. I truly don't know what I've done to deserve these amazing friends, but I thank the universe for them everyday. I'm so blessed and humbled by their generosity and love constantly. These past two weeks, the first week with our incredible family full of laughter, the second with the family we made out of friends, did two things for me. It reaffirmed how special these people are and made me miss them so much my heart aches. Independent of the company this trip also made me realize that I do feel better here, I do hurt more in the cold and damp. And that the time was right to move since I can honestly say the only thing I miss are those people. It feels so crowded and fast paced to me now. It's expensive and unnecessarily complicated to live there. Even M and the kids were anxious to get home even if we weren't anxious to leave our people. 

I indeed did keep a mini journal of how I felt while there. I paid very close attention to my physical symptoms with one minor error. I didn't think at all about my emotional health. 

Coming back home to Hawaii I was struggling physically- 17 days of travel with two small kids and constant company will do that. But the second day we were home the emotional letdown came out of the blue. I was exhausted to the point all of my defenses were down. I was home in bed and the adrenaline crash, emotional purge and inevitable comparisons of here to California began. It was a spectacular meltdown that unfortunately my husband witnessed part of. I cried so hard my body ached the next day. It was the kind of cry that comes from deep in your soul. 

I don't cry. I'm not a happy cryer at all, I don't necessarily cry when I'm sad and when I'm in pain or really stressed I actually laugh uncontrollably. This purge was a buildup of at least six months without tears and years without that level of just letting it out. And while being that scared and sad isn't pleasant it ultimately felt really good. You always hear that "getting it out" helps you deal with emotions and that they "build up" etc etc and I can attest to the fact that that is true. I feel cleaned out. I feel like being that emotionally raw was helpful in maintaining my strength. I don't try to hold my emotions in consciously, maybe my capacity for absorbing emotion is big but when that capacity needs to reset the purging of all of that emotion and fatigue is amazing. I feel empty, in a good way, like I'm ready to take it on again. Not to say emotion and mental health won't continue to play a huge part in my existence with chronic illness.

The talk in society lately is so much about mental health. I firmly believe that feeling your emotions and letting them out in a healthy manner is an essential part of it. Being happy all the time is not mental health. Being comfortable with your emotions no matter how they choose to present themselves, and being able to deal with them, be open about them, use them to grow and move on is a key element, for me at least. Phew! 

Expectations of something nonexistent

The reality of travel is that it's exhausting. I love travelling and being out of my comfort zone, always have, but it does require a stamina and energy different than others. I was reminded of that by a close friend this morning at a time I needed to hear it. 

I'm trying to remind myself that no one is superwoman and even "healthy" people need breaks and run out of energy. I tend to have higher expectations of myself, that's no surprise, but what I'm trying to get through to my head and heart today is what my friend's comments made me realize- that my expectations of myself may exceed what I could do even if I was perfectly healthy as I was 10 yrs ago…. Yeah mind blown. This may be why I can't seem to get past my unrealistically high expectations of what I should be doing. This seems simple but honestly is huge for me to realize. Whether that will help me in this eternal road to acceptance remains to be seen, but at least it's a new path to stop me from going in circles. I hope so and hopefully it can prevent existential breakdowns like the one I had yesterday. That was complicated and rather severe so it requires it's very own post.

Gambling with reality

Sitting in the donut shop we have always loved in our California town we buy our lotto tickets and perform our ritual of "what would you do….". There is no lottery in Hawaii so it's been a while since this beloved ritual of donuts and gambling.

I instantly say what I have always said and wanted. Being a traveler at heart and in my soul I say "I would go to the airport and get in the first plane I could to another country to explore." For some reason reality seeps into this particular morning's ritual and M says:

"It would have to be somewhere warm though." 

I stared at him in shock and silence as he and the kids threw around ideas of building mommy a special suit that keeps her warm and energized and helps her walk…. 

I couldn't believe, and still can't, how this one comment affected me. It was like being punched by reality in the solar plexus. No matter how much money we have or where we live or what is discovered I am stuck in this broken body. There is no "eventually", "down the road" or "someday" in this health journey. 

Sometimes comments slide on by and sometimes they become part of you. And damn don't you wish you could pick and choose which ones do which thing

Assessment, validation and for goodness sake write it down

We are on the airplane as I write this travelling back to California for the holidays. This has become a big test in my mind. Is it better in Hawaii or just better? I don't feel that the improvement is drastic but when improvement comes on slow after six months you have a hard time comparing. I feel like my flare ups aren't quite as miserable. I think  my good days are much much better. I'm pretty sure my medium days are easier to push through and still do what needs to be done if it nothing else. If I were smarter or more organized or something I would have been keeping a day by day account of symptoms. I have notes on particularly bad days and out of the ordinary symptoms, but general prohibitive symptoms I take for granted. 

I think I will try to be smarter these next two and a half weeks and keep a journal of my symptoms and my activity level, pain level and degree of fatigue. 

I think this will be good for the four of us especially to be able to directly compare my ability to function. In the last two weeks we went to the mall to have dinner while watching our daughters friend perform at night, went to the beach with friends, went kayaking in a bay near us, we went to an evening school function that was outside, I got the warm clothes from storage and washed them and packed myself and both kids, I ran a ton of errands including a Drs appointment of course, I wrapped presents and we did two of our sons flag football game. All while I had a sinus and bilateral ear infections and am now on my second course of antibiotics…

I think that's it. 

Something tells me these coming weeks won't be quite so active. However, my confidence in my body has clearly improved as I have been scheduling tons of get together a with friends while we're there!

Probably way too much. In Hawaii I'd most likely be able to do it, but in the 50 degree, rainy, damp northern California the chances may be just a bit smaller.

I will have tons of adrenaline to help me through since I'm so excited to see my family and friends!!! 

Beach walks and ikaika (pushing through difficulty)

Our beach

I've said my emotional state is more fragile here. I'm not sure I've said it here but I've definitely said it to friends. This is unexpectedly severe. I feel responsible for moving my family here. And while my kids are thriving and my husband is really enjoying all of the outdoor activities offered here "There's just so much fun stuff to do here!" He said just yesterday, I have this feeling of responsibility. Warranted or not, true or not, it makes my bad flare ups stand out much more in my mind and my emotions. 

I try not to talk about this stuff too in depth with my husband. He's so amazing and has so much on his plate taking over the kids and house when these flare ups happen that I feel like it's only fair to try to keep my mood good and not dwell or wallow. 

I'm not a "why me?" Person, and I'm more likely to do something I shouldn't and pay for it later than not do something. I'm definitely not lazy though to some it may seem like it, those that know me know that I'm more likely to overdo it on a good health day so I can get things done! And I get really really tired of being in bed.

Anyway, this was all true in California and it's still true here. I push through the pain and more here because it's not as miserable when it's nice and warm, and I have gotten smarter about just not doing certain things and trying not to feel guilty about it, but I still have bad days. Sometimes those bad days turn into bad weeks and then my mind and my emotions just tank with thoughts of being a burden, worthless, moved my family here for nothing, if the sickness isn't better here then it won't be better ever, this was our "last resort" for getting me to live a life I could participate in, yadda yadda yadda. You can see how these thoughts can spiral, especially when you can't get out of bed and have nothing to do but think. 

I've decided that when these thoughts take over and I'm semi functional I will take a walk on the beach listening to music and guess what? It really helps! Of course the first time I did it I was feeling good and I walked 3.5 miles in the sand realizing later (and for days after) that it's harder to walk on sand and works different muscles in my back than the ones I typically work on! But after that disaster I got smarter and keep myself to one mile round trip for now. I'll build up slowly because my goal is to walk to my favorite little market, get coffee and walk back. That's about 5 miles round trip and while I can actually walk quite far on level ground, even to my little store, sand I have learned is a very different story.

So I have worked to snap myself out of the emotional days when I'm having a decent physical day. As I'm sure you've figured out this doesn't leave me an option for those times when I just can't get out of bed… going outside and sitting on our patio helps but sometimes even that is hard. So I'm still working on that if you have any suggestions.

Overall though despite emotional days I feel more like I'm living life here instead of just existing as a lump in my bed! And as a friend said that's huge. I need to be kinder to myself and remind myself of that. And I need to let it be ok that though my bad days may not be much less frequent my good days are unquestionably better and filled with awesome activities with my family. That is enough, should be anyway, I guess I just need to tell myself on my bad days that a good day WILL come around again even if it takes a while and the possibilities for that day are seemingly endless here whereas they were still very limited before. If I can get myself to believe that it should work yeah?