Tag Archives: health issues

Another Story About A Tumor (or I Guess I Was Misdiagnosed For Over 15 Years)

Posted on February 21, 2019 | Comments Off on Another Story About A Tumor (or I Guess I Was Misdiagnosed For Over 15 Years)

I wasn’t originally planning on writing about getting my stitches out from the surgery with my dermatologist. I have gotten stitches out before and while they can hurt it’s not a big deal. And I had been able to see for the past few days that the scar was healing really nicely and that it wouldn’t be a big deal. I was so happy that everything was going smoothly and was just ready for the stitches to be out so I could move on.

I knew when my doctor did the procedure, they sent it off to pathology to figure out what was removed. I had been told for over 15 years that this was a wart, but I questioned it since it wasn’t responding to treatment. I knew it was very unlikely to be anything bad like skin cancer since it hasn’t changed much over the years and no other doctors seemed worried about it. But my new dermatologist was sure it wasn’t a wart and he wanted to know what it was. Even though he kept saying it couldn’t be a wart, I was feeling certain that it was but it was some sort of rare one that didn’t respond to treatments. So while I was curious to get the pathology report, I wasn’t expecting much.

I got my stitches out on Tuesday and my doctor was very pleased with how everything was looking. My scar is healing really nicely and it should be almost invisible in a year or so. Even now with it being a fresh scar, it looks so tiny and it’s significantly less noticeable compared to what it was before. I had been told to use Vaseline on my stitches at least twice a day, and I went overboard with that and used it maybe 10 times a day. My doctor said doing that really helped the healing and to make it look as good as it does so far. And he told me to keep doing that for about 3 months to keep the scar from healing weird and being obvious.

After the stitches came out, then it was finally time to hear what pathology said. I thought I’d know before my appointment, but they only finished the results right before I went in. And my doctor was right, I didn’t have a wart.

It turns out, the bump on my face was a trichilemmoma. It sounds scary, but it’s basically a benign tumor of the hair follicle. It’s not common, but it’s not rare either. And while it can be a symptom of some other issues, for me it was just random. And the only way to get rid of them is to have the surgery that I had, so I’m glad that’s what we did instead of just a basic biopsy. Now that it’s gone, my doctor said it’s about a 95% chance it will never occur again there or in another spot. It really was just random and it’s done now.

When I found out that it was a benign tumor, I had to laugh. Until recently, I didn’t have much personal experience with tumors. Since I learned about my liver tumors, my idea of what a tumor is has changed. Even though I knew not all tumors were cancerous, having experience with non-cancerous tumors has made the word much less scary for me. So I wasn’t worried at all when I was told it was a tumor. It just was funny that of course I had yet another random medical issue.

And while I have had multiple dermatologists tell me over the years that it was a wart, I don’t blame any of them for misdiagnosing me. I’ve had other things in my life that were misdiagnosed and it’s never been the doctor’s fault. They can only use the evidence in front of them to figure out what might be the diagnosis. A majority of the time, they are right. Sometimes they are not. And I’ve never thought that they were bad doctors when they were wrong.

What does frustrate me is that I wasn’t a better health advocate for myself. I know what other doctors have done and what things haven’t been working. I could have said more about how often I’ve tried to correct this and the treatments didn’t work. I had one doctor previously offer to do a biopsy, but I didn’t push for it and I wish that I had. We would have figured out right after that was done that it was this benign tumor and I would have saved a few years of things not working. I can’t go back and change what happened, but I can use this as a reminder in the future that I should be less afraid to tell a doctor that I don’t think that enough is being done. That doesn’t guarantee anything would change, but I can make sure they hear me and my concerns.

For now, I’m just glad that this is done. I’m very optimistic about how the scar will look as it fades and I’m so happy that when it’s a bit less red than it is right now that I won’t always be worried if I remembered to put concealer on my face to cover it up (which is something I stressed about when I had the bump). I’m excited to have this as a thing in my past and be just another funny medical story I can share from time to time.

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Posted in Fun Stuff, Health

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A Surgery Afternoon (or This Has Been Over A Decade In The Making)

Posted on February 13, 2019 | 6 comments

On Monday this week, I had the little surgery with my dermatologist to remove the wart on my face (or whatever it is). This has been something I have been dealing with for so long, and it’s crazy to think that I just had a surgery to take care of it. I’m still in a bit of pain from it all, but I am glad I did it.

I haven’t gotten the results from the biopsy yet, but I’m going to assume that it was a wart. That’s what every doctor has told me it was. When I first got it when I was 18, the dermatologist I saw did 1 freezing treatment and it went away within a few days. It was so easy and simple and I thought it was done forever. But when it grew back, it seemed to come back with a vengeance.

I’ve done so many freezing treatments with so many doctors and that was always their first choice with treatment. When one doctor finally said it might need to be surgically removed, I went to a plastic surgeon to discuss it and was pretty much told it was a bad idea. I just kept going to new doctors and having them try to freeze it. And it never worked.

If it was just a boring wart, I don’t think I would have cared as much. But this was painful and causing issues and I wanted it gone. So when the newest dermatologist I met (for an unrelated issue) said that it would be a quick and easy surgery, I decided to go for it.

I knew that this would involve some shots since they had to numb my skin. And I knew it would probably hurt after the numbing medication wore off. But those negatives would be worth having this done with and not a problem in my life anymore. I did ok with the numbing shots, but they weren’t fun. My doctor understood that I hate needles and he really tried to be nice about it all. He kept apologizing when they had to do more just to make sure I’d be good and numb before he started.

The actual biopsy procedure was so quick. He used a tool that punched out a circle of my skin and that was it! I didn’t feel the punch at all but I was warned I might feel some pressure. But I was so numb and it was so quick that it was over before I knew it! The longest part was getting the stitches, and there were a few complications.

My doctor knew that there would be blood because he was cutting a hole in my skin. And I know that certain medications can make you bleed more so I didn’t take any of my medications that I could skip for the past week. The only thing I took was my Vyvanse and my anti-nausea medications. However, after my doctor asked if I took any blood thinners, I remembered that I also had taken some Motrin to ease my cramps last week. It wasn’t that recently, but it was still in my system and it was making me bleed more than expected.

Fortunately, it ended quickly and my doctor was able to start working on the stitches. This was the part I hated the most. I could feel him stitching my skin and pulling on it even if it was painless. But it was the weirdest sensation and I really didn’t like it. It wasn’t painful, but it just bothered me. I also could hear random things since this was happening close enough to my ears and that was freaking me out a bit too. But I tried my best to stay still because that would help my doctor do his best work. With this scar being on my face, I wanted to do whatever I could to minimize it.

The entire thing took a little under an hour. It did take time to get everything ready and for the numbing shots to kick in. Plus it took longer than expected because of the bleeding issue. I only got 2 stitches in my face, but my doctor wanted to make sure they were perfect so the scar would be the best it could be. I will always have a scar there now, but it should be better than what it looked like before.

I got to look at the stitches before they covered them up, and I was a bit surprised how tiny they were. I don’t know what I was really expecting, but I thought it would be much more than what it looks like. Right now, it almost looks like a hashtag or pound sign on my chin. I feel like it looks worse now, but when the stitches come out and the scar is healing it will be better.

And in the long run, a scar is going to be much easier to cover with makeup and won’t cause me pain or the other issues I’ve been dealing with. I’m so glad that this is done and while I hate the pain I’m in now I know in the long run I will be glad I did this.

Now, I just have to rock the stitches look for the next week before they come out. Not sure if I’m going to put a bandage on it while I’m out in public (I know I will when I go to my workouts), so it will be interesting to see the reactions of others.

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New Year Another New Doctor (or Getting Ready To Get Some Stitches)

Posted on January 30, 2019 | 2 comments

I am not a fan of changing doctors. I like having a medical team that knows me and understands whatever issues I’m going through. I’m a medical weirdo so it can take a while to update a new doctor on my current situation and I’d rather avoid doing that. I’ve been lucky that many of the doctors I see on a regular or semi-regular basis are doctors that I have had for years, but occasionally I have to switch doctors for one reason or another.

I mentioned that my body is starting to show signs of stress. Some of the stress was showing up as odd bumps on the back of my neck that I didn’t know what they were. I tried not to freak out about them, but they weren’t getting smaller and they were sore so I knew I needed to make an appointment to see my dermatologist. Unfortunately, this time of year seems to be very popular with all dermatologists and the doctor I have been working with for a while wasn’t available for at least a month. I didn’t want to wait that long, so I asked if I could see a new doctor and I was able to get an appointment for earlier this week.

By the time I had my appointment, the bumps on my neck were almost gone. But I still wanted to get them checked out along with a few other skin issues I wanted to ask about. I don’t like to stack up medical issues, but this time that’s just what happened naturally.

Fortunately, the bumps I had on the back of my neck were nothing bad. It was more to do with my hair follicles than my skin and I got a recommendation for a new soap I could use that would help prevent them and make them go away if they return. I also asked if my recent hair loss in the spot that I had the bumps was related, but they weren’t. I just happened to have a bald spot in the same spot and that may have been the reason I noticed the bumps. If they had been covered by my hair, while I might have still had a bit of pain I wouldn’t have noticed them or realized they were bumps instead of a bruise.

And since I was seeing a new dermatologist, I also wanted to ask about the wart that I’ve had for over a decade. My last dermatologist considered doing a biopsy because she questioned if it could be a wart (typically even without treatment they will go away within 6 months), but it got postponed and I honestly forgot to do a follow-up to schedule it. I haven’t done anything to treat it recently and it’s been bothering me just as much as it always has.

This new dermatologist had the same hesitation as the last one about whether or not I have a wart on my face, but he didn’t hesitate on what we should do. He suggested that I come back for an in-office surgical removal. This is what I had discussed with a plastic surgeon a long time ago and that doctor made it seem like it would be a very difficult process with a very horrible scar. I didn’t want to disfigure my face, so I didn’t pursue the surgery with the plastic surgeon further.

And my last dermatologist never felt like it was the right option to take. I don’t know why I didn’t push the issue further and see what she felt would help this go away since all the treatments she had been trying had failed, but I know what hasn’t worked for over a decade. And while there are a few other options that I know I could ask to try, I also know the success rate of those other options are usually under 50% and most of them are painful.

This surgery is super minor and will be done with just a numbing shot. I will have stitches in my chin for about a week before they are removed and I will have a scar. The scar might be very obvious at first, but the dermatologist feels like it should be faded within 6 months and it will be easy to cover with makeup. And even with having a scar there, it will be less noticeable than what I have now. But to me, it’s not about how I will look. This wart has been painful for years and I want that pain gone.

I know it sounds like a rash decision and that I’m just hurrying things along. But this is something I have considered for a very long time and every doctor I have brought it up to has hesitated and told me that they didn’t feel this was a good option. This doctor was very confident in being able to make it work and to make the scar as small as possible. And for me it is so important to work with doctors who feel confident. I don’t always need my doctors to have all the answers, but they need to be confident in what they say even if they are saying they don’t know the answer at the moment. And I like the confidence of this doctor and I am ready to take the leap and finally get rid of something that has bothered me for years!

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A Week Of Tough Workouts (or Frustration As Motivation)

Posted on December 10, 2018 | Comments Off on A Week Of Tough Workouts (or Frustration As Motivation)

This past week of workouts weren’t my best. I had issues with the weather affecting how I was feeling plus I had to deal with nausea. These issues are frustrating to me, but I really tried my best to not let it get to me too much.

Monday’s workout was an endurance day, but it felt a bit like a power day with how the treadmill section was formatted. I was on the treadmill, but my hips were a bit off so I was power walking the entire time. I tried not to be frustrated since the format would have been a great running day, but I am struggling with feeling ok with not being able to run sometimes.

On the treadmill, the first block was a 1 minute all out pace followed by a walking recovery. Then we had 3 rounds of a 30 second push to 1 minute all out pace. The next block was 2 rounds of a 2 minute push pace followed by a 30 second all out pace with a walking recovery in the middle. And the last block was a 4 minute progressive push followed by a 30 second all out pace. And we ended with a walking recovery and one more 1 minute all out pace. I was keeping my inclines on the treadmill at the inclines I usually do, but I was having to take more breaks than I normally do. My hips were just feeling tight and off and I wasn’t sure how to fix that.

On the floor we had 3 blocks and each of those blocks included a 1 minute all out row. I was able to get better every time I did the row so that made me feel a bit better after the treadmill. In the first block we also had lateral lunges and squats, in the second block we had lateral lunges and regular lunges, and the last block was a core blast. The core blast included plank work, push ups, and sit ups.

Wednesday’s workout was a power day. And I thought I had been frustrated to not run on Monday, but Wednesday was even worse for me. We had rainy weather and that always makes me hurt. So I had to use the bike and it was hard because this was another perfect workout to work on my running if I could have done it.

On the cardio side, it was a timed run/row format. All of the runs were 90 seconds long with a 30 second push pace, 30 second base pace, and 30 second all out pace. For the bike, I tried to go 1 or 2 resistance levels higher than I normally use since it was so quick. And after those 90 seconds we switched to the rower where we had 3 rounds of 30 second all out rows with 15 seconds to recover between for a total of 2 minutes. We did the treadmill/bike part 5 times and the row 4 times before switching to the floor.

On the floor, it was timed as well and it matched the cardio side. Whenever it was a 90 second round, we were doing a form of burpees. Whenever it was 2 minutes we had ab work following the same pattern as the rower with 3 rounds of 30 seconds of work and 15 seconds to recover. I pulled the bench down to use it for my burpees, but I still had to do some of my burpees stepping back instead of jumping back. The burpees started basic and we added on every round to include things like using weights, doing bicep curls, doing shoulder presses, and doing ultimate burpees. The ab work switched between sit ups and weighted double crunches.

Friday’s workout was a 3 group workout and I was starting to deal with nausea that morning. I used the bike for my cardio to keep the nausea to a minimum. It wasn’t that bad when I started class, but I knew it was probably going to get worse as the morning went on.

We switched between the blocks so I had 2 rounds on the bike, 2 rounds on the rower, and 2 rounds on the floor. On the bike, I wasn’t thinking too much about what I was doing. I just didn’t want to feel sick. I used my normal resistance levels for my push and all outs, but I wasn’t pedaling as fast as I know I can go.

On the rower, we had sprint rows with half squats between each row for the first block and slightly longer rows with calf raises between each row for the second block. My speed on my rows was within the time we were supposed to be at, but they weren’t my best. But I was able to get through my half squats and calf raises quickly so I got a lot of rounds on the rower done.

And on the floor, we had mini-blocks within the blocks. The first block had push ups and plank reaches as a mini-block, pull ups on the straps and triceps on the straps as a mini-block, and plank low rows and pop jacks as a mini-block. And the mini-blocks in the second block were the same but we had them in the reverse order so we didn’t miss out on doing any exercises. I struggled a bit with some of the plank work, but it was much better than I expected I could do.

Saturday was a strength day and a day that my nausea was a bit worse. I was pretty happy to be on the bike because I do know that even with my nausea being bad sometimes I can do some great things with my resistance levels.

And that’s exactly what I did. I was usually higher resistance levels for almost all of my hill work on the bike. I was trying to push myself more than I normally do and there were a few moments that I could do exactly that. And when I was using the resistance levels that I’m used to, I was working on pedaling faster than normal to make up for it. I did have to take breaks to let the nausea pass, but I used those as my regular breaks and then tried to go harder when I was working.

On the floor, we had 2 blocks and the big focus was on doing single arm clean to presses. We had so many of those to do and then we had other exercises between. In the first block, we had 3 rounds of single arm clean to presses with bench overhead extensions, bench sit-ups to jump squats, and a 200 meter row. I had to split up my bench sit-ups to jump squats to crunches and then doing squats because I couldn’t take going from laying down to standing that much. And the second block had single arm chest presses, plank work, and a 200 meter row between the single arm clean to presses. I had to do my plank work using the bench, but it wasn’t the worst workout for me to deal with my nausea.

I know that I probably sound like a broken record because I am always trying to figure out how to tolerate my nausea in my workouts. It’s not something that is easy to figure out, even 2 years into the process. But I am trying to use the 1-2 weeks a month that I have it as a motivation to try to find where I can do better work. I think I accomplished that a bit this past week and I’m looking forward to trying to do that even more this week.

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Having To Defend Myself (or My Eating Disorder Isn’t Taken Seriously By Others)

Posted on November 29, 2018 | Comments Off on Having To Defend Myself (or My Eating Disorder Isn’t Taken Seriously By Others)

My eating disorder is still a big part of my life. I don’t think about it as often as I used to, but it’s still a major factor in multiple aspects of my life. I’m so grateful that I’m on medication that does help make things easier to manage at times, but it’s not a cure. But I do still have to do a lot of work on my own and it’s not easy. I struggle most days at least for a part of the day and there are days where I struggle the entire day. I often wish that this wasn’t how my life had to be, but it is the way it is and I can’t change it about myself. I feel very certain that I was genetically disposed to have an eating disorder and all I can do is work on managing it and trying to get into recovery.

I’m very open about having an eating disorder (possibly too open at times), but I find that being open is helpful to me. I don’t have to hide something about myself and when I try to explain things that my eating disorder affects it’s much easier than just speaking around it. One thing that is easier to explain is why I look the way I do when I workout 4 days a week.

If I didn’t have an eating disorder, I’m sure that I would look amazing. I don’t know if I’d be as thin and muscular as I’d like to be, but I would be in normal sized clothing and nobody would question me if I worked out or have other people in my workout class who don’t know me treat me like it was my first class ever and come congratulate me on starting to work on my health. I know that I’m much stronger than I look and I’m probably in better cardiovascular health than people who are naturally thin and don’t work out, I just don’t look like that.

And I’ve had people question me about if I really work out or if my workouts are worth it lately. Whenever I go to the doctor they do the intake questions which includes if I work out. I always say I do 4 days a week at Orangetheory and the person doing my intake usually looks shocked and tells me they are proud of me. I hate being talked down to like that, but it’s not worth me saying anything back. They don’t know me and I don’t need to explain myself because it will just happen again the next time.

But more recently I had someone who I know well ask me if my workouts were worth it because I look like I had gained weight (I haven’t, but maybe I look like I have?). They didn’t question if I was working out, but they questioned if I was wasting my time and money on something that they felt was not worth it for me.

I was speechless when that happened and I could only mumble that it’s hard to show progress when I still am battling my eating disorder and quickly changed the subject. I really couldn’t think of anything to say or a good comeback and just wanted to move past that discussion. I knew that if I had to hear them dismiss my workouts or effort any longer that I would probably start crying and I didn’t want to deal with it.

But the more I think about it, the more that conversation angers me. Beyond it just being rude, it’s disrespectful and if I was in a worse mental state it could be harmful to me. If I wasn’t feeling so good about my workouts, maybe hearing from someone else that I am wasting my time would make me stop working out because it isn’t making me lose weight right now. I might have a binge episode because I felt like all my work wasn’t worth it. Fortunately, I didn’t have either of those reactions and I almost used it as motivation to just keep trucking along.

I know that binge eating disorder isn’t as well understood as other eating disorders, but that doesn’t give anyone who knows I have an eating disorder an excuse to downplay the seriousness of it. Imagine if I was someone with anorexia and was trying to get into recovery but was still very thin and unhealthy looking. And if the person who talked to me said that clearly I was still sick looking so working on eating food is a waste of my time and effort. I don’t think anyone would ever say that to someone battling anorexia, but binge eating disorder isn’t taken as seriously by many people. They see it as a lack of self-control, lack of willpower, or just being lazy. And that’s not the case at all.

I think if this was all about willpower that I would probably have already gotten into recovery and this wouldn’t be anything I would need to worry about. But there are so many factors that make this so tough to get over and it’s not just eating less and eating healthier. Whenever I have a binge episode, it’s not something I want to do. And I always regret it immediately. Sometimes that regret happens in the middle of an episode so I can stop myself, but sometimes it’s not until it’s over and it’s too late to make it less severe.

I know that I can’t expect others to change how they treat me and that when people treat me and my eating disorder with this lack of respect that it has nothing to do with me and everything to do with them. But it does still hurt because I work so hard every day to get into recovery. I hate having my efforts being dismissed like this and I have to remind myself that they don’t know my life or my situation. I’m just grateful that I am surrounded by so many people who treat me the way I should be treated and they have helped me realize that I am working hard. They show me that they are proud of me and I use that when I am feeling down. I’m lucky that most of the people in my life are people who work to help me and it’s only a few people who seem to want to bring me down.

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Posted in Food, Health, Tough Stuff

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Being Social and Nauseous (or Taking Some Inspiration From My Workouts)

Posted on November 20, 2018 | Comments Off on Being Social and Nauseous (or Taking Some Inspiration From My Workouts)

I write about dealing with nausea in my workouts quite a bit. It’s usually about a week or two every month so I have a lot of workouts where I am nauseous. Last week was one of those weeks. And I think that I really do well when it comes to not letting that set me back too much. I do have to make several modifications to my workouts when I feel that way, but I still go. And it’s a point of pride with me that I still make it to my workouts no matter how bad the nausea gets. While I have missed class before when I’m sick, it’s never because of nausea.

But for some reason, I can’t seem to take that idea and apply it to the rest of my life. When I have my bad nausea days, I want to just hibernate in my house. I rarely will leave the house beyond my workouts and I will go out of my way to not have to leave. If I was planning on going to the grocery store, I will order delivery food so I don’t have to be outside the comfort of my own home. I will go do things if I have no alternative or if it is time sensitive, but I really do prefer to be home when I feel like that. I don’t always throw up when I’m nauseous, but I’m always terrified that I will and I’d rather be sick at home.

I do miss out on some fun things because I want to stay at home, but it’s only been lately that it’s really upsetting me that I do that. I have missed a few really fun events that I wanted to go to, including 2 different goodbye parties for friends who are moving away from LA. Fortunately, both of those friends still have time before they each leave for the cities that they are moving to, but it still sucked to miss an event that I had been excited to attend. I know that they both understood why I didn’t make it to their parties and for both of their parties they had a lot of other friends there. But that doesn’t make me feel any better about letting my nausea stop me from going.

I don’t know why I have the ability to push through the nausea to go to workouts when I don’t have the same ability to push through to go to something fun. Maybe it’s because I know a workout is only an hour long and going to a party might be longer? Maybe it’s because in a workout I don’t have to do much with other people and at a party or event I need to be social and have fun? I’m not exactly sure what the reasons could be but I know that it’s something. And I really want to figure out how to get beyond this.

I’ve been lucky that I haven’t had to miss a lot of events due to the nausea, but I know that this isn’t necessarily going to get better. I have several more years of these weeks of nausea each month ahead of me and I don’t want to have to plan my life around those weeks. I need to work on some skills that I can use to help myself not feel as awful or to hide how I do feel. I have my various medications and homeopathic options to try to make myself feel better, but I guess it’s time to explore more options beyond what I have. And I also know that being as open about this struggle as I have been has helpful as my friends don’t seem too upset if I’m at a party and not feeling my best. They understand why I might not be chatty and they don’t bug me about why I’m not acting like my normal self.

And maybe I can use the fact that I can go to my workouts while nauseous as inspiration for how I can be out and doing fun things while nauseous. I should pay more attention to my body and what I use to make it through my workouts and use that for the rest of my life. I don’t know why I haven’t done that yet, but maybe I needed something to be the inspiration for wanting to work on this even more than I have. I still have the small hope that there will be something that will end up working for me every month to either not feel nauseous or to make it tolerable. But I also have to be realistic and plan for that to not happen. So I have to figure out my own solution to work through this to stop letting it affect my life as much as it does.

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A Boring Tumor Check In (or Still A Miracle)

Posted on October 24, 2018 | Comments Off on A Boring Tumor Check In (or Still A Miracle)

This week I had my appointment with my liver surgeon. I had my MRI about a week ago and this appointment was mainly just to confirm that everything is still ok with me. When I saw my surgeon a year ago, I was just so grateful to know that the shrinking tumors wasn’t a fluke. I was pretty nervous about things leading up to the appointment because I felt like things kept changing every appointment. But now, things seem almost routine (or as routine as they can be when you have multiple non-cancerous tumors in your liver).

Before my appointment with my surgeon, I had the text copy of my MRI report. When I first learned about my tumors, there were 3 of them. Last year, they could only see 2 of them. These tumors will never go away completely, but they can get so small that they aren’t seen on a scan anymore. And this time, I still only had 2 tumors in my report and they were even smaller! Last year, my surgeon mentioned that getting all my tumors under 3cm was a goal to have in mind because it makes some things less risky for me. And at that appointment last year the biggest one was just over 3cm. But according to this new MRI report, it was under that! So I was pretty excited to see my surgeon and hear what he had to say.

I’ve said this before, but I am so lucky with my liver surgeon. He is very upfront and honest about things with me, but my appointments also feel very casual and almost like a novelty. He’s not used to having patients who have shrinking tumors, so I think he is entertained by my case. And that’s fine with me because I’m pretty entertained by it too! And I think having these appointments feel so calm and casual has helped me relax about a medical situation that could be very scary.

He knew that I already saw the text to my MRI report so he confirmed what I read. My largest tumor, which started at about 10cm, was now 2.2cm. My smallest tumor is still not seen on the scan. And the medium-sized tumor had a little decrease in size from 1.1cm to 1cm (but that one started at 3cm). When we watched the images from my MRI, the biggest tumor looks so tiny in my liver now!

It’s also still completely inside my liver which is a good thing. When we discovered it, the tumor was half inside and half outside my liver. It was hanging off (as my surgeon likes to put it, it was hanging off like a bunch of grapes) and that was a very risky and dangerous thing. If the tumor broke off my liver, I could have had massive internal bleeding. It’s a big relief to know that not only is the tumor smaller, but that it is still completely inside my liver.

After looking at the images, we discussed the plan. There isn’t a big plan since this is still an unknown situation for my surgeon, but this is all good news. We discussed my future and what things can be riskier for me and what is now safe that the tumors are smaller. If in the future I need fertility treatments, they are an option for me now but I will need to be monitored. The same goes for if I’m pregnant in the future. I will still be high-risk, but it’s not as dangerous as it would have been before. Unfortunately, hormonal birth control is still too risky for me so I can’t go back to how things were before. But if that’s the only thing that is too risky for me, that’s not that bad.

We also discussed my future monitoring. My surgeon said if I wanted to have MRIs every other year instead of every year, we could do that. While I don’t love having MRIs, they aren’t the worst thing for me anymore. So I told him that if he wanted to do annual scans I would be ok with that. So he decided that I would have another MRI in a year and then we would reevaluate the plan in a year. And of course if anything changes or I have something happen, I can let him know and I can have a scan and appointment sooner. But I don’t expect anything to happen that would make me need to go in sooner than a year.

This seriously was such a normal and almost boring appointment. Nothing that big was said beyond confirming my tumors are shrinking. It’s so weird to think about how 2 years ago when I learned about the tumors everything seemed so crazy and hectic. I felt like a lot of things were happening quickly and was just trying to stay calm. Now, only 2 years later, seeing my liver surgeon was one of the easiest and least stressful doctor appointments I’ve had. The only weird thing we went over in my appointment was about the gallstone I currently have. It’s one large gallstone that is bigger than any of my tumors. But it’s better to have one big stone compared to a bunch of little ones. But we discussed that if I do have gallbladder issues again that he can take it out for me and take out the largest tumor as well. But I’m not expecting to need that soon. I haven’t had a gallbladder attack since the tumors shrank and that’s probably because the tumor was distorting my liver and pressing on my gallbladder. Now that the tumors are smaller, my gallbladder isn’t affected the same way.

So that’s really it from my appointment. There weren’t any big things discussed and the plan is to do another scan in a year. But there is no reason to expect that my tumors will grow again in the next year. I know there is a chance they won’t shrink anymore, but we aren’t expecting them to grow since they haven’t done that in any of my scans. Since discovering them 2 years ago, every scan has shown them getting smaller.

It’s been a crazy 2 year journey so far! I went from discovering I had tumors and needing surgery in October 2016, to finding out the tumors shrank in April 2017, to having them continue to shrink in my October 2017 scan, and now they’ve gotten even smaller!

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Default ThumbnailA Quick MRI Turnaround (or At Least I Have Some Answers) Default ThumbnailMy Easiest Follow-Up So Far (or I Might Only Have One More Of These) Default ThumbnailA Tumor Miracle (or I Wasn’t Expecting This) Default ThumbnailTumor Update Time! (or Guess I Won’t Have Another Of These For A While) Default ThumbnailTumor Updates (or I’ve Got A Plan For My Liver) Default ThumbnailAnother Story About A Tumor (or I Guess I Was Misdiagnosed For Over 15 Years)

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Getting Ready To See My Liver Surgeon Again (or My Annual MRI)

Posted on October 18, 2018 | Comments Off on Getting Ready To See My Liver Surgeon Again (or My Annual MRI)

It’s crazy to think that it’s been a year since my last liver MRI. It seems like it wasn’t that long ago, but that might be because I do think about my liver tumors from time to time. I don’t dwell on them, but they are in my mind and I try to make choices that are good for my liver. I know that drinking and eating certain foods can’t hurt or help my tumors, but I have no idea why my liver is able to shrink these tumors on its own. So I try not to do anything that will stress my liver out so it can work the best it can.

At the same time, tomorrow marks 2 years since I learned there was something potentially wrong with my liver. It feels like I’ve been dealing with my liver story for much longer than 2 years! But I guess it’s just because it was such a huge focus of my life for 6 months before my miracle. And for my 2 year anniversary of discovering the tumors, I had another MRI to check in on them.

While I’ve had issues before with needles, things went better than expected when I had my blood drawn to check my kidneys before the MRI. But I was still nervous about the needle for the IV as well as how I would feel being in the MRI machine if I wasn’t feeling my best. The morning of the MRI I was having lower nausea than the days before, but I still took some medication to make sure I wouldn’t get nauseous or have too painful of cramps when the tests were being done. I know that staying still is so important in an MRI and for most of the images I need to hold my breath. So I wanted to be in the least about of pain and nausea possible.

The MRI was running behind (which I expected so I had my book with me), so while I was waiting I tried to stay hydrated so the IV would be easier to get in and just relax. I wasn’t focusing on what was coming up, just on what was happening in that moment so that I could stay calm. They ended up not running as behind as they thought so before I knew it I was in my hospital gown and ready to go.

They did the IV in my arm after I was already settled on the bed of the MRI machine. That was fine with me since I would already be laying down in case I passed out. I had a feeling I wouldn’t faint because it’s been so long since I actually fainted (versus blacking out where I can still hear things around me), but I like to be prepared.

Even with all the issues I’ve had with needles, it’s usually a quick process. I can’t remember the last time I needed multiple attempts at an IV or blood draw. I know that several years ago it too multiple shots to numb me before dental work, but that’s different. And for some reason, it took 3 tries to get my IV in. I tried not to be annoyed by it, but it was painful and by the third try I was feeling a bit off. But it finally worked and they were ready to get me into the machine for the MRI.

I’ve had enough MRIs over the past few years to know what to expect. It’s not the most fun thing to do, but it’s not bad. I know things could be much worse so I feel lucky that my MRIs are usually a quick process. Since we are only doing a check to see the size of the tumor (when I had my first ones it was to diagnose what it was), it’s usually only about 30 minutes inside the machine. I’ve got random things I think about to pass the time and I usually count the weird noises when I have to hold my breath. Some of the scans seem to take forever and I can’t hold my breath that long, but I really try my best to wait until I am instructed to relax.

A majority of my MRI is done with no contrast in my body. The last 2 or 3 scans are done after the contrast is put into my IV. In the past, the technicians have warned me when they were going to start the contrast. It’s not painful, but it’s cold and a very weird feeling. I can feel it in my toes even though it starts in my arm. And you do feel it moving in your body. It’s just an uncomfortable feeling for a few seconds, but nothing I can’t tolerate. I don’t know why they didn’t warn me this time, but they didn’t. So I was a bit surprised when the contrast started but I also was grateful that meant that the MRI was almost done.

When they got me out of the machine, they got my IV out which was again painful. I don’t know why my skin was so sensitive, but it was. I ended up having a bruise in my arm where the IV was, but it faded after a few days and it wasn’t as sore as a normal bruise. I guess it’s just my battle scar from the MRI. I think I was trying so hard to not feel nauseous in the machine that it did come at me when I was getting dressed and ready to leave, but I knew I’d be home soon enough and could do more things to feel better.

I see my liver surgeon next week, but I’m not expecting it to be that exciting of an appointment. As long as my tumors aren’t growing, we aren’t going to do anything. I still may get them out one day even if they don’t grow, but that would be in combination with me getting my gallbladder out in the future. But since I haven’t had a gallbladder attack in a few years, I have no idea if I even need to do that anymore!

Even though last year I got great news and was told I didn’t need to worry about anything for a year, it still felt so connected to the stress of learning about the tumors and planning for surgery. Now that I’ve had another year removed from it, I finally feel like I might be back to normal again. I know that I will likely need to be checked from time to time, but it now feels like a check and not preparation for something big.

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Some Highs And Lows Of My Body (or I Found One Possible Benefit To My Nausea)

Posted on October 12, 2018 | 2 comments

I feel like a broken record writing about my nausea on here. And my body feels like a broken record too because this just keeps happening over and over again. Fortunately, it’s decreased in length a bit. When this started up again 2 years ago, the nausea was about 2 weeks a month so it was 2 weeks on and 2 weeks off. Now, its between 7-10 days long so sometimes it’s 1 week on and 3 weeks off. And I’m always grateful for the time that I’m not feeling poorly, even if it is limited.

But while the length has gotten better the actual symptoms feel like they are getting worse each month. I need to be better about tracking this because I know it hasn’t been a steady increase in pain, but I think overall it is much worse. And this cycle things are worse than they ever have been for me. I hate complaining, but with the way my body feels right now that’s just where my head is.

As I am typing this, I am using so many different things to try to keep the nausea and pain low. I am wearing my anti-nausea bands, I have a heat pack on my stomach, I have KT tape on my stomach (a newer thing I learned that helps with the cramps), I’m staying as hydrated as possible, I have taken painkillers, I took anti-nausea meds, I look menstrual pain relief medications, and I’m keeping anti-nausea lozenges in my mouth. I don’t know what else I can do and I know my doctor and I have been working on any other options for me.

Normally, I am in pain and nauseous but it is lessened by just a few of these treatment options. This time, it doesn’t even feel like the edge has been taken off. I’m so glad I work from home because I want to have all my things around me, but I also know I’m not working at my best right now. I did get some new suggestions from people online for things to try (if anyone has personal experience with a TENS device I’d love to know about it!) but I also know that without hormonal treatments I am limited.

I have been telling myself that in 2 years this is the first time it’s as bad as it is. So many it will never be this bad again for another 2 years. I still would prefer to never feel like this again, but I also know that I need to be realistic and prepare for when this does happen again. I don’t want to be caught off guard and not have things in my home to make this better. I don’t feel safe driving when I’m in this much pain (some of the cramps are giving me white outs in my vision) so I don’t want to have to leave my home for any remedies.

I know this all sounds really horrible and awful, but I also know that there are so many people who have things worse than I do. At least I have options that work most of the time and have a doctor who is more than willing to help me find something that works. My doctor believes my pain which sadly isn’t the case for so many people. I couldn’t imagine what I would have to do if my doctor thought the pain couldn’t be this bad or that it was all in my head. She knows it’s real and she wishes she could make it stop for me.

I did randomly find one possible benefit to my nausea this week though. I had to get blood work done because I am having a liver MRI this weekend. Before any MRI that uses contrast dye, you have to get blood drawn so they can test kidney function. This makes sure that your body will be ok with the dye. The dye can cause issues for people with kidney problems so they always check before every MRI. I got mine done on Wednesday after work and was wondering how getting blood work done while feeling horrible would be.

I don’t really faint the same way that I used to with needles, but I still have these weird blackout moments. When a needle goes under my skin, my entire body tenses up and I hold my breath. It’s weird and I can’t seem to stop that part, but I’m just glad I’m not passing out completely. And when I have these blackout moments, I’m still conscious and aware so I always hear medical staff talking to me and telling me to relax or breathe. I can’t in the moment, but when it passes I relax and my breathing is normal again. While I do always warn any medical staff that I do this, I think they are always surprised by it. But I feel glad that this is a minor reaction to a needle and I feel totally fine when it’s over. I’m not shaky or light-headed. I can just go on with my day. It was a little different when I got Botox, but I think that was because the needle was only a part of it and feeling the Botox go into my skin also freaked me out a bit.

When I went in for my blood work on Wednesday, I warned the lab tech the same way that I always warn people. I don’t want them to be scared when it happens or think that I need medical help when it’s done because I’m sure it looks scary in the moment for them. Most people don’t tense up or hold their breath when getting blood drawn, so they aren’t used to it. I didn’t say anything about already being in pain or nauseous because I didn’t want to worry them more nor did I know what it would be like this time.

To my surprise, somehow things were actually a little easier for me! I still tensed up and held my breath, but it was much shorter than normal and it didn’t feel the same way it had in the past. Usually I can feel a bit of soreness from where my muscles tensed up, but this time I didn’t have any feeling after I relaxed. It was a nice surprise and I was glad that it wasn’t worse than expected. The blood draw is only for one test so it’s super fast. Pretty much right after I was back to normal the needle was out of my arm and I was on my way to do other things I needed to do after work.

Of course, I don’t want to wish to be more nauseous whenever I need to do blood work. While it was easier this time, it was not that much of a difference so the added pain and annoyance of the nausea didn’t outweigh the benefit. But it did make me feel a bit better about how my MRI will go this weekend. I am not looking forward to the IV being put into my arm, but maybe it won’t be as bad as all the other times because of the nausea. I would prefer for the nausea to be gone today so I don’t have to worry about it during the MRI. I’m still nervous about being in the machine for all that time without being able to move if I have a bad cramp or if I feel like I need to throw up. But I’m trying to stay optimist about it all.

Ideally I won’t have to deal with this pain and nausea every month for that much longer, but realistically that’s not going to happen. But at least I found a small silver lining to the cloud of all this stuff I deal with every month.

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World Mental Health Day (or Seeing So Many People Be So Open)

Posted on October 11, 2018 | Comments Off on World Mental Health Day (or Seeing So Many People Be So Open)

Yesterday was World Mental Health Day. Throughout the day, I saw a lot of posts on social media with people sharing their stories of mental health struggles or trying to get treatment. And for the friends who don’t have personal experiences with mental health issues, they were sharing notes of support or saying that they could be there for anyone who needed it. It was really amazing to see it all.

For so many years, it seemed like nobody was talking about mental health. It was a private thing someone dealt with and a lot of time that also meant that there was shame as well. But people have been more and more open about their own issues and I feel like the stigma of mental health issues is not nearly what it used to be years ago. I know that some people still are embarrassed that they need help with something that others don’t think twice about, but almost everyone I know has said that things felt more normal when they shared their story and realized that so many people have the same issue.

I haven’t been shy to share my issues with mental health. I went through a long time of being misdiagnosed and I think that made my situation worse than what it was on its own. And now that I’m in a better place with treatment and working on self-care, I’m doing better than I ever remember feeling. But I also remember how dark it can feel when you feel alone or misunderstood. Or when you are being told you should be feeling better and you aren’t. I remember wondering what was wrong with me when I was being told that a medication would make me feel better but in fact it made me feel worse and more upset about the little things in life.

I try to be there for as many of my friends as possible. Sometimes that means just being a supportive ear and listening and sometimes that means forcing a friend to get help. I have learned that I can’t be there for my friends 24/7 because that actually makes things harder on me, but I try to be there as much as I can. My phone is always near me and I’ll pick it up in the middle of the night if someone calls and I hear my phone vibrating (I don’t leave it on to ring since that means all other notifications would make noise too). And if someone needed to come over to not be alone, I wouldn’t hesitate to tell them to come over.

I have put a bit too much pressure on myself to be there as much as I can be for others, but just like with other mental health issues as soon as I was public about that others told me that they had the same problem. That’s why I’ve been doing more self-care things and trying to prioritize myself. I’m still working on finding the balance between being there for those who need it and being there for myself, but it’s getting there. But I’ve also learned to help my friends find others who can be there just like I can and so many of them have created their own mini-support groups with different friends so they have a bunch of people they can reach out to when they need support of any kind.

I think that while it is still important to have a day like World Mental Health Day so that people are sharing their stories, since so many people talk about mental health year round that it feels like it’s just World Mental Health Day every day! And that’s the way it should be. People need help and support every day and it’s important that when that happens they don’t have to feel alone. So by sharing stories year round when they happen it will be helping someone out there who needs to hear that story that particular day.

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