but then....

I didn't want to mar the description of our Australia trip or take away from the message that you can still live your life even with chronic illness, but when we got back my health failed spectacularly. 

The day we arrived home I went to bed and developed a 103 fever. The Drs thought it was a virus I picked up on my trip. After a week of 103+ fevers it broke. But then the oddest thing, it kept spiking. I'd be ok during the day and then it'd spike to 102, then the next day I'd be ok in the morning and it'd spike to 101. It was so odd and just wouldn't stop, so I requested lab work. 

Now, if you've never had a Dr call you and tell you to go the emergency room immediately it is an experience I'll tell you. 

I was not overly concerned, being so used to health issues, but the lab test results showed and obvious infection somewhere in my body. I figured I'd get some antibiotics and head back home. That is not what happened.

To save you the drawn out process of 2 CTs, an ultrasound and countless vials of blood and an ER Dr telling me "you don't look sick", I'll jump to the finish line. Apparently, my appendix had ruptured. Isnt that deadly you may ask? Yes. Yes it is. Luckily my over active immune system did something good this time and walled off a good amount of the infection into an abscess the size of a tennis ball. My abdomen was full of fluid and infection still but the abscess helped contain most of it. My spleen was 3 times it's normal size and my intestines and tissues were so swollen they couldn't even find the appendix, and while surgery is the normal course of action in this case the infection and swelling were too much for them to risk opening me up. 

An abdominal drain, 6 days in the hospital on 24 hr IV antibiotics, countless more blood tests and several more CTs and I got to go home. With the drain still hanging out of me. 

I don't remember a lot of it, I was really  very sick, but I do know that it was almost 6 months before I felt completely back to normal. 

After about 3 months they did surgery to remove my appendix. After about 5 months they put me back in the hospital and under general anesthesia for suspected intestinal blockage, and sprinkled in there were a few more ER visits. 

The funny part is now the Drs aren't even sure it was my appendix! What was it then you ask? They have no idea. They checked my intestines, ovaries, uterus, stomach etc etc and found no obvious rupture. So, I now live with the Drs recommendation that if I get a fever I go directly to the ER. Meanwhile they sprinkle in tests here and there also....2 more coming in June! One that takes 4 hrs. Ugh. 

Anyway, I am healed mostly and all I can say is that I am beyond thankful this happened here and not on our trip. Not because it would have sucked to be sick away from home, but because it would have ruined our amazing trip! There's always a bright side. Sometimes you just have to look really really hard. 

Feeling alive again downunder

In February of 2024 I had the unbelievable privilege of going to Australia with my daughter, her friend and her friend's mother. It was just the four of us and we went to go to a concert(Taylor Swift-dont judge me lol). I did not really care about the concert (it was FANTASTIC though!) but a chance to spend 8 days in Australia with my daughter really appealed to me. And it appealed to us to give her this once-in-a-lifetime experience. As I'm sure you can imagine it's a difficult trip. We happen to live in Hawaii so the flight is actually not that bad, but being on my own with my daughter in a foreign country without the help of my husband was daunting. 

Now, I absolutely love to travel. It is probably my favorite thing to do in this world. In this life. It always has been. I traveled extensively and constantly before I had kids for many many years all over the US, all over Europe, Canada, Mexico, etc. Once we had children, and I got sick, travel obviously got pushed to the back burner, but we still took our trips to Hawaii (where we had our families with us) and little trips to some other closer places. Lately travel has not been on the agenda for financial and health reasons, so this was the first big international trip I had taken in over 15 years. I was beyond ecstatic, but that excitement was definitely overshadowed by abject terror. I honestly wasn't sure if I could physically do it. 

About 2 days before we left I had a date with my son because I wasn't going to see him for those 8 days. We went out to the arcade and to miniature golf, all the things 11-year-olds love. Luckily here all those things are available at one mall. However, I got seriously ill at the mall with one of my usual problems which involves projectile vomiting and severe abdominal pain. I am no stranger to throwing up in random public restrooms, but it really brought to light the fact that I was going to be so far from home. Even just driving home from the mall proved to be challenging that day and that was after a whole lot of trying my hardest not to have to leave at all so my son could enjoy his day, while simultaneously throwing up in 4 different bathrooms. On a positive note I now know where allll the bathrooms are at that mall!

I remember lying in bed with my husband that night telling him that I was so scared and I didn't know what I was going to do if my health seriously failed me a 10-hour flight from home in a foreign country alone with my daughter. The fact that there was another adult there who was a good friend was obviously of some comfort, in fact she and I met for breakfast to discuss what I needed and what to do if something should go wrong with my health, but I always tend more toward not wanting to rely on my friends when it comes to my health. And I especially didn't want to ruin their trip with my health.

Now, before you think I'm complaining, the reality of life is I got to go to Australia with my daughter for a week. 

But what I do hate about chronic illness is the fact that it makes you rethink your wants and desires, it makes you rethink what you are capable of doing, and it really makes you doubt yourself. That's exactly what it did in this case. 

I have always been a very capable person. I was very independent, sometimes to a fault. I still use the words " I can do it myself" far too often. I honestly prefer not to rely on other people, not because I have some great fear they'll let me down, but just because I am capable person and I don't really like to inconvenience other people. My husband told me one time that a main part of my personality is not wanting to be a burden to anyone else. And unfortunately I think he's right. So of course hello, multiple chronic illnesses that make me overly dependent on others! Think the universe was trying to teach me something? I agree. So it annoys me that when the subject of Australia came up my first thought of course was: Can I do this? And even more frustrating was I didn't feel confident in the answers. However, I also felt that this was an opportunity that I could not pass up. Because of our friends we got plane tickets super cheap, and because we could share an apartment the lodgings were inexpensive also, so the trip was actually inexpensive. For a once-in-a-lifetime experience. I could not pass it up. My daughter deserved it, and my husband and I really wanted to give it to her. 

So I said yes, I committed and I tried to think about the trip just in a matter of fact way. This is what we were doing. Until those two days before we left when that experience of course brought my illnesses right back to the forefront. What if I get this sick in Australia and I don't know where I am and I can't get myself back to where I need to be? What if I'm there alone with my daughter and something happens to me?...... The what ifs of life right?

But obviously we went. Luckily my health stayed somewhat stable and the way we organized the trip made it very easy for me to take care of myself properly. The trip was beyond amazing. It could not have gone better, it could not have been more fun, we could not have had a better experience. Honestly. My daughter and I had such an amazing trip, time, experience. The concert was incredible. The country is incredible. Thankfully, my daughter and I are very close and we just get along so well and it's easy to be together. It was so much fun to even just do nothing with her. She will tell you and I perfectly agree that the best day was the day that she and I (our friends had gone off on their own) just took off from the apartment walking with no destination really in mind. We stumbled upon a botanical garden, two museums, an interesting pig statue and the Sydney Opera House where we had snacks and drinks overlooking the Opera House and Sydney harbor! Through trial and error we learned to navigate the subway and we even went to an open house just to see what life was really like living there. It was one of the best days I've ever had... It was worth the entire trip.

I wish I could say the worry was for  nothing but it's really just a part of life for anyone in this situation right? There has to be extra thought, extra planning. We can't just go where and when we want. But this trip definitely reminded me that I CAN do these things as long as I do that extra planning. It made me feel truly alive as Kim for the first time in awhile and reminded me of how much I love experiencing new things. I hope I can keep remembering and continue to find things that make me feel alive. Because I think too often we get caught up in just surviving these illnesses and we forget how to actually LIVE. 

I'm baaack!

Hi! Aloha! I'm back! I don't know if anyone is even going to see this or is still listening, but I am back to talk about life and chronic illness. I don't even really know where I left off. The last couple years have been kind of miserable from a medical standpoint. Last year was especially difficult with new things, not even the same old ones I've had! But let's sort of start at the beginning. 

One of the reasons that I disappeared was because it was discovered that my thyroid hormone was way off which is actually why I was exhausted, gained 30 lbs, my hair was falling out (remember that post?) and why my sodium was low!! I was really quite sick and not understanding what was happening. 

I take a supplement called biotin that apparently affects the thyroid testing. I have been on thyroid medication for 28 years and no one has ever mentioned this to me before. I finally got a new endocrinologist who mentioned it and did something about it. That was a great few months, until the tests started coming back wacky again and they started changing my dose again. Your thyroid is responsible for your metabolism, so every time they make a change in my medication it changes my metabolism. Meaning: my energy level, my ability to sleep, my appetite, my weight, even my skin and hair. Everything. 

This all started back in 2021, so for the last 4 years I've been on a roller coaster of thyroid medication and therefore metabolism changes every 10 weeks. So I have short periods of time where I feel good, then I have periods of time where I feel awful, then I have periods of time where I'm in between, or have good days and bad days. Lots of bad days.

When you been dealing with a health issue for 28 years, you kind of get to the point where you really just want the doctors to listen to you about it. Right? I'm not crazy for thinking that am I? I do feel like my current endocrinologist listens to me, but I don't think like she is believing me, even though I've been dealing with this medical issue longer than she has been a doctor. 

Where she is skeptical is that I do not believe that the lab test they are using is accurate for me. This is not unheard of, this is not a one-off, this is not a one in a million, it is possible for the lab test to be inaccurate for many reasons. One of those was the biotin clearly, but there are several others. So I made a chart for her showing my thyroid medication doses compared to the test results and it clearly shows that the test numbers really don't change even when my dose is adjusted, sometimes by a lot. So, while being as polite and agreeable as possible, I'm trying to have conversations with her to explain that I have symptoms at a certain dose and do not have symptoms at another dose and with both doses my test results come back the same. To me it makes perfect sense that you would put me on the dose where I don't have symptoms right? Well as it turns out in Western medicine no. The test is God and cannot be overruled. So that's where I currently stand. Hopefully I will have more news coming soon about this, but I'm not holding my breath. Meanwhile I'm losing time with my kids and husband and struggling through just daily life. 

But c'est la vie of a chronic illness sufferer (survivor? I don't really like sufferer...)