Category Archives: Health

Requiring Masks Again (or This Doesn’t Change Too Much For Me)

Posted on July 20, 2021 | Comments Off on Requiring Masks Again (or This Doesn’t Change Too Much For Me)

Over the weekend, LA County put their mask mandate back. It’s been about a month since the mandate ended and things were looking much better as far as daily cases go. So many people were getting vaccinated and I was celebrating each time I heard of a friend getting an appointment for a vaccine. When I set up my vaccine appointment earlier this year, I had heard so many stories of friends trying for so long to finally get through to a person. So I was so grateful when I was vaccinated and it seemed like we were getting closer and closer to all eligible people being vaccinated.

I knew that kids still weren’t able to get the vaccine, but at least with all people over the age of 12 being protected, things should have been getting better. And they were for so long. When things returned to normal, I was so hopeful about the world starting to return to normal. The end of the mandate last month didn’t change too much for me, but it did allow me to feel like things were better and I stopped stressing out as much as I had before.

But shortly after the mandate ended, daily cases started to increase. I knew this could happen, but I don’t think anybody expected it to happen the same way it did. We went from having under 200 cases a day to over 1,000 cases a day within about a week. And even though 99% of the new cases, hospitalizations, and deaths were from unvaccinated people; things were looking a bit out of control. And if it was only unvaccinated adults who made the choice to not be vaccinated, maybe it would seem different. But children have no choice and cannot be vaccinated and things were getting more dangerous for them. So even though I think everyone didn’t want to have to wear masks again in all situations, I understand why they put the mandate back. We need to stop this surge before it gets worse.

It’s frustrating and upsetting to see things get worse, but I’m grateful that they took action quickly and hopefully the surge won’t get much better. And maybe this will motivate more eligible people to be vaccinated. I know not every state is going to have the same push that CA might have, but things have been so patchwork for so long and I don’t know if there could be a way to hope for some policies to be nationwide.

I don’t hate wearing a mask, but I don’t love it either. I have had multiple panic attacks while wearing a mask. None of the attacks have been horrible, but they are never fun to deal with. It’s not about having something on my face necessarily, but more of a constant reminder of the state of the world. It’s why I have mainly been doing online and delivery shopping, even for groceries. But I understand why they are necessary and how they help. And I feel like I will wear a mask during cold and flu season in the future to protect myself. And compared to the sacrifices so many others have to make to be safe, wearing a simple mask is a small thing to do.

Even when the mask mandate ended, I still wore a mask in almost all public places. There were signs at the grocery store that fully vaccinated people didn’t have to, but I did since they didn’t ask for proof and I felt it was something respectful I could do for the employees. I’ve only been to restaurants a few times since the pandemic hit, and I would wear my mask unless I was eating or drinking. But I haven’t gone to a lot of shops or out to many public things like movies. So even though I didn’t change too much when the mandate ended, it still felt like a step forward. I’m trying to not look at the mandate coming back as a step back, but it’s hard not to be a bit pessimistic about it.

Hopefully, the cases will drop again soon and more people will be vaccinated so we can end this mandate and not take a step back again. We are so close to being over the pandemic and we can’t give up so close to the finish line. And until we are done, I will be doing what I can to keep myself safe as well as others. I just hope that more people feel the same way and get vaccinated soon.

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Almost Forgot My Hip Surgery Anniversary Again (or 15 Years Down)

Posted on July 9, 2021 | Comments Off on Almost Forgot My Hip Surgery Anniversary Again (or 15 Years Down)

Every year since my hip surgery, I try to remember to celebrate the anniversary of my surgery. The first few years were a little less celebratory because I was still worried that each year that passed meant I was one year closer to the next surgery that was supposed to be necessary soon. But once I surpassed what my hip surgeon predicted I started to celebrate more and more and I didn’t worry about when the next surgeries would be. Even though I know I will still need a few more surgeries, they don’t seem like they are looming over my head as something I will need to do soon.

I rarely forget my hip surgery anniversary, but it does happen sometimes. And this year was one year that I almost forgot. I didn’t remember it until the day was half over and I realized what the day was. And this was a big anniversary because it marks 15 years since I had my hip surgery!

Almost forgetting about my surgery anniversary is a sign that this isn’t as big of a deal in my life as it used to be. But I don’t think I will ever stop thinking about each year being something to be excited about. And 15 years is a big one. In a few years, my hip surgery will be half a lifetime ago for me! But for now, it is a significant chunk of my life ago. And just like any other surgery anniversary, I’m still impressed by how much I have been able to do since surgery.

I’m so happy that I don’t have to deal with as much pain as I had in the past. I do still have pain every day, but most of the time I don’t have to take anything to deal with it from day to day. Compare that to before my surgery when I was maxed out on 2 different painkillers and still in intense pain. Even though I do have to take a painkiller when things get really bad, those moments are rare and I’m not taking something regularly. Sometimes, I can even go several weeks without needing a painkiller. That would have been impossible to think about before my surgery.

I have accomplished so much that I was told may not be possible after having surgery. I know that sometimes I take a few more risks than I should, but I also have decided to not live in as much fear as I used to. I don’t do the things I was warned about the most, such as things that are real fall risks for me, but I do take chances with things that I was told aren’t the best for me to do but also not super dangerous. And this has allowed me to live life a lot fuller than I thought I would be able to.

I do still spend time every day to make sure that I’m taking care of both the hip that was operated on and the other side which will likely be the next surgery. I stretch almost every day (I’m working on being better about doing it every day). I use foam roller balls to help with my muscles since I depend on them to help support my hip joint. I try to move around during the day when I can so I don’t get too stiff. And I make sure that any shoes I get won’t be too hard on my hips. This means I can’t always wear the shoes I want to and I have to be a bit more practical at times, but after dealing with several days of pain from wearing unsupportive shoes, I know that is something important.

With all the issues I have regarding my health and body, I don’t have a ton I celebrate. But this is one that I should celebrate and be proud of. My hips have been able to do things that I didn’t think I could do. Even with all the medical issues and things I was warned about, somehow my body has overcome that and I haven’t had to focus too much on the negative over the past 15 years.

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And Another Dermatologist Check-In (or Having Changes Be Routine)

Posted on July 2, 2021 | Comments Off on And Another Dermatologist Check-In (or Having Changes Be Routine)

I’ve been working with my dermatologist on my autoimmune condition since the beginning of this year. It’s not the first time I’ve worked on it, but it’s the first time I’ve had a doctor who understands the condition and is really working on a plan with me. And while I’m so grateful to have someone working with me on it, it’s frustrating when it’s not a simple solution. You don’t just take one medication to make it get better. It’s not even one type of medication. It’s testing out a lot of different options that can improve things, but not necessarily cure them. And I know it can be a long process, but I still wish it wasn’t like this.

So far, I have tried one medication I’ve been on a lot that is usually used as an antibiotic and I actually took after getting cellulitis. Then at my last appointment, another medication was added that can help make things better and is usually prescribed for blood pressure issues. The antibiotic one does bother my stomach, but it’s not that bad and I have figured out ways to make it more tolerable. So I was fine with that one. But the new one that was added last time was a bit of a wild card. I naturally have low blood pressure, so taking something that could lower it more had the potential to cause some side effects.

And it did do just that. I stuck it out for the past 2 months, but I’ve been dealing with having lightheadedness and some dizziness. And I would usually feel it more when I was working out. There are other things that I thought could be side effects, but I wasn’t too bothered by them. But I really wanted to try this new medication out the entire time to see if it got better.

So when I had my follow-up with my dermatologist this week, I told him what I was experiencing and he wanted me to stop taking it. He actually said I probably should have emailed in and he would have told me to stop sooner, but I really wanted to give it a chance. But I’m also glad to be no longer taking it since it was annoying to have side effects that felt so similar to the vertigo that I had a few months ago.

Since the new medication didn’t work, I’m now trying another one. This one is usually given to regulate blood sugar (something I don’t need to worry about) but it has shown to also help the condition I have. Just like any other medication, it does have side effects, but most of them seem to be things I already deal with such as nausea. I just have to be careful with timing when I take the medication so that I’m taking it with food. Not too hard of a thing to do and I’m already decent at doing that with the other medication I take.

But then, I got some news I wasn’t expecting at my appointment. The antibiotic that I’ve been on (that I do see helping now) can’t be taken for a long time. I’m already close to the limit of taking it and when I go for my next follow-up, I will need to stop. While I knew the medication wasn’t a permanent fix, I guess I didn’t think about when I would have to stop taking it. And there is a chance that this new medication will work (and it can be something I take for a long time) so it won’t matter. Or maybe I’ll hit a level of remission and I’ll be fine in a few months. You never know.

Before I left my appointment, my dermatologist went over a few of the other issues we discussed last time (everything is fine and I’m looking like I’m having progress). And we discussed a bit about the surgery I can get for my autoimmune condition. Right now, I don’t want to do surgery. There are still other medications I can try and surgery would have a long recovery time. It is the only permanent solution, but if I can be in remission that works for me too. I just have to see if that’s possible. So I have to continue testing out medications until I’m out of options, then I’ll think more about surgery.

I guess I’ll see in about 3 months what the new plan is. The only thing I know for sure is that the plan I’m doing now will be changing then since it has to. But as long as I’m working on it and have a doctor who is willing to do that too, then I’m finding ways to be ok with this frustration in not having answers just yet.

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Mental Health Lessons From The Pandemic (or I’ve Gained New Empathy Over The Past Year)

Posted on June 23, 2021 | Comments Off on Mental Health Lessons From The Pandemic (or I’ve Gained New Empathy Over The Past Year)

I think most of us around the world have an odd time regarding mental health since March 2020. Some gained new anxieties and fears. Some learned how we really are introverts or extroverts. Some gained new coping mechanisms (both healthy and unhealthy). And some learned to prioritize their mental health for the first time. Even though I have been very aware of my mental health and mental health issues, so many things have changed how I think about things because of what we all went through.

I have had some real low points, and I have learned to appreciate the little things that make me happy. And yes, I have picked up some coping mechanisms that aren’t the healthiest and I’m working to fix things so I don’t rely on those as much. And while I do wish we didn’t have to go through all this, it has been interesting to see what things I have learned regarding mental health for myself and for what others experienced.

For example, when things shut down and so many of us were numb, I learned a lot about how our brains protect us when things are too overwhelming and that’s why we might be numb. We might not understand how bad things are even if we have the information and facts. Some people might have been acting like things weren’t as bad as they were because of this. But some people just refused to believe it and were defiant. Most of the people who were numb didn’t speak out too much about feeling that way because they didn’t know that’s what they were experiencing.

And right now, with so many of us hesitating about going back out in the world, there have been discussions and posts online about how some trauma takes time to show in our lives and we might be reacting to the trauma of the shutdown now. Some of the fear and anxiety might have not been felt before if we were numb and now we are seeing how serious things really are. And when you see so many people out there not caring about wearing a mask or being vaccinated, it can make things worse when there are so many unknowns about what happens there is a new surge.

And besides learning about current mental health issues and how they connect with me, I have learned a lot about how this experience relates to things that I had no clue about before. The best example I saw was discussing how the time we are in right now is only a fraction of what people who were in prison and getting out experience.

For a while, we have lived condensed lives. We haven’t seen many people, had to make that many choices about what to do, and we have stopped being social. When someone is leaving prison, they experience so much of the same but also so much more. And I know that I never gave too much thought about how long it might take someone to reenter the world after prison. I know I’ve thought about things from a technology standpoint and thinking how overwhelming it might be if someone went to prison when cell phones were basic and now they are handed an iPhone. But also, now I can understand wanting to stay isolated even when that’s what they’ve been experiencing for so long. Not wanting to be in big groups or around a lot of people makes a lot more sense. When you go from such a limited life to a full life, everything seems like a lot.

And I don’t think I could have truly understood this feeling without experiencing it a bit myself. Even though I do get burnout and overwhelmed, this is a different level of it. It’s almost like sometimes I can’t focus on things because there are so many possibilities for me. There aren’t things I’m necessarily trying to do to overcome this feeling besides be gentle with myself and not feel like I have to go out to do things just because I can.

I’m sure that one day, looking back at this time I will have more lessons I’ve learned and things I appreciate. But for now, I’m just grateful for the little bits that I’ve learned, the new skills I have, and being more aware of situations others may be experiencing.

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Thoughts About The Reopening (or Feeling Safe And Scared At Once)

Posted on June 17, 2021 | Comments Off on Thoughts About The Reopening (or Feeling Safe And Scared At Once)

This week, California officially reopened after being shut down for over a year. This has been a process happening over the past few months, but it drastically changed this week. Now, there are no occupancy restrictions anymore and it is not required for everywhere to require masks. There are a few places that still require masks like on public transportation and at medical centers, plus businesses can decide they are going to require them, but for the most part, masks aren’t needed anymore.

This is what we were all waiting for. This is what I’ve been wanting for so long. But now that it’s here, it makes me so incredibly nervous. I know when things shut down at first, I couldn’t wait for them to be normal again. But the longer the shutdown happened, the less I felt like I was ready to be back. I don’t want to wear a mask forever, but I have gotten used to it. And the few times I’ve been maskless recently (like when I have been out to dinner) have felt like I’ve been doing something illegal even though it was allowed.

I know that I am pretty safe. I am fully vaccinated. Even though medically I am higher risk, being vaccinated helps a lot and I don’t spend time around a lot of people who aren’t vaccinated. I don’t spend a lot of time around anyone even if they are vaccinated. I do take some risks that others don’t, like going to Orangetheory, but in general, I do not take many risks and still spend a lot of my time isolated.

With things reopening, I am a bit nervous to go out and about and do things like errands. I know I can still wear my own mask and will probably do that for a little longer. I want to see how things look in a few weeks after we’ve had some time without masks before I feel more comfortable being maskless all the time. I don’t know if my grocery store requires them right now or not, but I would hope that people in my neighborhood are either vaccinated or wear masks if they are not. I know that unvaccinated people might not wear masks since people aren’t confirming anyone has been vaccinated, but I hope that it’s a very small minority of the people that I would encounter.

Despite being nervous and scared about how things will go from now on, I’m also so excited to keep getting parts of my life back. I want to go to stores to shop instead of ordering online. I want to go out to see movies. I want to enjoy more meals out. I want to feel like I can be safe doing things that I used to do all the time without thinking twice about them. I just don’t feel ready quite yet to jump into all of that yet.

I know that for a while, my nerves were stronger than my want to go out and enjoy my life again. Now, I would say things are 50/50. And I bet soon, wanting to go out again will be more than my nerves and I will feel much better about joining the real world again. I will still probably be cautious for a while since I know things aren’t over and I don’t want to take a risk I will regret. But every time things move a bit more toward normal, I do have hope that it will continue that way and soon this will all be in the past.

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Really Tired of Feeling Awful (or For Some Reason This Month Is The Worst)

Posted on May 28, 2021 | Comments Off on Really Tired of Feeling Awful (or For Some Reason This Month Is The Worst)

I write about having monthly pain and nausea on here all the time. It’s an unfortunate and annoying occurrence in my life that I deal with every single month. Sometimes I will have a better month, but I haven’t had a month without dealing with this since I had to stop taking continuous birth control. And while I have medications and other things to make me feel better, sometimes it’s just not enough. And this month, it’s one of those months where things just aren’t getting better.

Most months, I deal with this for about 10 days. Sometimes it’s a little less because I feel almost normal earlier than I expect. When I first got off the pill, it would occasionally last for 2 weeks, but that rarely happened and almost never happens now. But of course, this month looks like it may be a month I have pain and nausea for at least 2 weeks.

I’m still in the middle of things, so there is a chance it will get better sooner. But honestly, I’ve been pretty miserable since the middle of last week. The pain can be unbearable at times, even with being on constant painkillers. The nausea isn’t as unbearable, but it is more annoying because I never can tell if I will end up throwing up or not. I’m lucky that my body seems to know when I am in public and not able to be sick, but that’s still a fear I have all the time.

But besides the pain and nausea, I just hate not feeling like me. The bloating is bad, but it’s worse when none of my clothes fit and I have to convince my brain that it’s not because I really gained a ton of weight. Being crabby and irritated isn’t my natural state and I sometimes have to work hard to not take that out on other people. I’m trying to be more social now that it’s possible, but right now I just want to curl up on my bed and nap. I try to force myself to not do that, but sometimes I just can’t find the motivation to do anything else.

And even though this is my blog and I can write about whatever I want to, I hate that I’m complaining about this. I know that things can be better (and they were for so long and I miss that time), but I also know that things could be worse. Having regular cycles is a sign that my body is still working the way it should. I know there are a lot of issues that I might not know about even with a regular cycle, but it is still a good sign. It would be worse if I was constantly going through medical tests to figure out what is wrong with my hormones or body, and I have several friends who have to do that. Hearing their stories of various tests and procedures does make me grateful that my issues can be planned and scheduled around.

As much as I try to be positive and think that maybe I’m being dramatic and my body will surprise me, I have to be prepared for it not to be that way. And even if I felt completely normal again tomorrow (unlikely, but you never know), the past week has still been one of the worst times I’ve had and it’s been a real issue in my life and trying to be able to do anything.

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Some New Medication Side Effects (or At Least I Know How To Handle This)

Posted on May 21, 2021 | Comments Off on Some New Medication Side Effects (or At Least I Know How To Handle This)

When I saw my dermatologist recently, I added another medication to my regular routine to help get my autoimmune condition into remission or a lower stage. Just like any medication, if you are taking something for the first time, there can be side effects. And sometimes these aren’t a big deal and sometimes they are a reason to stop taking the medication. I’ve been pretty lucky, I don’t usually get bad side effects from medications. I have had a few reactions that made me stop taking something, but those are rare cases.

And usually for me, if I have any side effects, I notice them quickly. Sometimes they start immediately and sometimes they take a few days. But they usually happen quickly so I know what will happen. And I assumed if I had any side effects to this new medication, it would be the same.

But I guess this one had delayed side effects or my body had to get used to this medication to start reacting because I only started to feel side effects this past week. Fortunately, they aren’t that bad and I was told to prepare for them. I also have a friend taking the same medication who warned me. I thought I would be one of the lucky ones that didn’t react, but it’s not horrible that I did have a reaction.

The side effect that I started to feel this week is dehydration. And considering this medication is sometimes prescribed to people who are retaining water, it makes sense. It can also cause dry skin and hair, but I haven’t had that happen yet. All I’m noticing is that I’m thirsty a lot throughout the day.

I tend to be someone who overhydrates, so to feel thirsty isn’t something I usually experience. But because I typically overhydrates, at least this is easy for me to deal with. I do have to be careful and not drink too much water because that can make me sick. But increasing my water intake is very easy for me to do and not a huge change to my routine. I have to make sure that I am tracking my water because being thirsty can make me forget how much I’ve already had. And I know that some of the thirst that I’m feeling is just the medication and not really thirst.

I am grateful that staying hydrated is something I’m used to doing. I don’t drink a lot of things other than water, so I don’t have to worry about drinking things that actually dehydrate me. I also am not someone who struggles to drink water, so I don’t feel like I’m forcing myself to drink. It’s been a part of my regular routine for as long as I can remember, so increasing things a bit isn’t a huge change for me.

I’m hoping this is the only side effect I get from this medication. There are a few others that are common that I do worry about getting. And even though I’m experiencing dehydration now, that doesn’t mean that more side effects can’t come later. I’m a bit more paranoid now about side effects happening later since it took some time for the dehydration to hit me. But I also know that I will either be able to get through whatever side effects happen or I will let my doctor know and we can stop the medication.

I know this isn’t that big of a deal, but it is an annoyance to add to my life. But at least a lot of other things are going better in my life so one annoyance isn’t too bad.

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Mental Health Month (or There Is No Shame In Therapy)

Posted on May 14, 2021 | Comments Off on Mental Health Month (or There Is No Shame In Therapy)

May is Mental Health Month. Mental Health Month is all about sharing how help with mental health can be for everyone and that there is nothing wrong with getting help. And I strongly agree that mental health help and therapy are for everyone. I feel even stronger about this now because I have seen how my own mental health has fluctuated during the pandemic. Even someone who was completely stable before could be having worries now that they could get help with. And there are so many ways to get help these days.

I don’t know how many therapists are doing in-person appointments unless someone is having severe issues. But those will be coming back if they aren’t back just yet. But there are other ways to get help. I personally have used phone and video chat visits with my therapist, even before the pandemic. And those visits are so easy to do and require less time than going to an in-person appointment.

I’ve been in therapy for quite a while. While I haven’t continuously been in therapy since I was a teen, that is when I did start going. And I’m pretty open and honest about being in therapy for various issues. I have no shame in the fact that I’m working on getting help and I’m always happy to share what I’m going through.

So when I saw my friend Amir post this tweet, I knew I would have to tweet about it and wanted to go further in sharing my therapy journey.

When I started going to therapy when I was a teenager, I was a little embarrassed that I was going, but I also didn’t necessarily hide it. I also wasn’t as outspoken as I am now. I went mainly for issues like mild depression and anxiety, but I also know now that there is a chance that I was misdiagnosed. This isn’t the fault of the therapist I saw, I know I was misdiagnosed by more than one therapist. But I think it was how I presented at the time and what I was willing to share. I also didn’t go to that first therapist that much, so they really didn’t get to know me.

When I was in college, I had a different therapist that I started to see the summer between my freshman and sophomore years. That was the second therapist that looking back misdiagnosed me. But I know why I was misdiagnosed and I think I gave up on that therapy sooner than I should have because I wanted more immediate results.

I did group therapy for my eating disorder in my early 20’s for a few years. That group was great and I learned a lot about myself and what coping skills I could use. And I still stay in contact with many of the people from that group through social media. I might have stuck with that group longer, but life got in the way and I couldn’t attend. I’ve thought about maybe going back, but I also know the people I knew from the group aren’t there anymore and I don’t know if I want to start with a different group. At least not right now (or when it would be safe to go to a group therapy thing again).

There were several years I wasn’t in any form of therapy until I started again to more specifically discuss my eating disorder. And while I specifically started therapy again to get on Vyvanse (since you had to be seen by a doctor to get it), I also discussed other issues with that therapist. That’s where I really learned more about the mental health issues I have and why I might have been misdiagnosed in the past. I know now that my mild depression and panic issues are related to other things like having OCD. I also understand why some of the medications I was taking in the past might not have worked for me and why sometimes it made me feel worse. And while I didn’t go on any medications besides Vyvanse (I actually stopped taking some), I felt like I was getting much better.

That therapist that I saw to get on Vyvanse moved away, so I have a new therapist working with me on things. But we also both understand in a way that I have reached a stopping point with getting mental help with my eating disorder. Now, it’s more about managing my reactions to setbacks or other tough moments. And I am working on a few other things still, such as managing my OCD and overcoming emotional abuse in my past. But even as I work through these things and feel at times that I’m stuck, I know that I’ve made a lot of progress.

But one of the biggest things that I think has helped me over the years is being open and honest about getting help. Having others in my life know what I’m struggling with allows them to be there for me when I need it. I don’t feel like I have to hide a part of myself or watch everything I say or do. And being open about therapy has also helped to connect me with others going through the same thing. Having people who understand some of the quirks with a specific mental health issue is so helpful. Being able to share resources or have a sounding board is something I know I needed. And while my friends are great about supporting me, sometimes you just want to talk to someone who is going through the same situation. But I wouldn’t have that support from anyone if I wasn’t getting help myself or being open about it.

If you are struggling with any mental health issues, please find someone to talk to. Even if you don’t think things are that bad, you have a chance to make them better. There is no shame in getting help. If you had a broken leg, would you feel shame if you had to go to a doctor and couldn’t fix it yourself? No. Getting help for physical health issues is accepted by everyone. And hopefully, soon enough help for mental health issues will be viewed the same way by anyone and everyone.

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Default ThumbnailMental Health Month (or Better Late Than Never) Default ThumbnailWorld Mental Health Day (or Seeing So Many People Be So Open) Default ThumbnailA Super Easy Therapy Appointment (or Just Doing A Check-In) Default ThumbnailAnother Pandemic Therapy Check-In (or Hanging In There) Default ThumbnailAnother Therapy Check In (or Someone Sees Progress) Default ThumbnailA New/Old Challenge (or Using An Idea From Therapy This Month)

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A Dermatologist Follow-Up (or I’m Not Always The Best Judge Of Progress)

Posted on May 5, 2021 | Comments Off on A Dermatologist Follow-Up (or I’m Not Always The Best Judge Of Progress)

3 months ago, I saw my dermatologist to discuss a really bad flare-up with my autoimmune condition. Of course, at the time I finally got to my appointment, my flare-up wasn’t as bad as it had been. But even when it’s not bad, it’s still seen on my skin. So even though I had been previously diagnosed and done some one-off treatments in the past, the appointment earlier this year was the first time my current dermatologist had confirmed the diagnosis and started to help create a plan to see what will work for me.

There are a lot of options to try to treat this condition, but none of them are guaranteed to work. Some people react well to one medication or another. Some people need surgery. Sometimes one medication will work well for a while and then it won’t work anymore. And some of these medications can make you immunocompromised. That’s something to worry about in normal times, but now it’s even scarier. Even with me being fully vaccinated, I don’t want to be on anything that would make me at a higher risk for being a breakthrough case.

So at my last appointment, I was put on 2 different medications. One was a broad-spectrum antibiotic that I’ve been put on before. When I went to urgent care about a year ago for a bad flare, that’s what they put me on to make things better. But I usually have only been on that antibiotic for maybe a week or two. And this time, I was going to take a higher dose and take it twice a day. The other medication I was put on was to help with some side effects that the antibiotic can cause, so even though it wasn’t something that would necessarily help my autoimmune condition, it was something new to add to my medication routine.

And I’ve been following my dermatologist’s instructions to the letter these past 3 months. I wanted to give this the best chance I could because it would be the easiest solution for me. And it would be amazing if it ended up being the first thing we tried that got me into remission or as close to remission.

Over the past 3 months, I’ve stayed hopeful but I really didn’t think things were getting better. It’s not easy to tell, but I didn’t notice a huge difference in the flares I was getting. And the pain caused by the flares seem to stay at the same level no matter how bad things are, so I can’t really judge by the pain.

So when I went into my follow-up last week, I told my dermatologist that I didn’t think things were that much better for me. He asked me to guess how much better, and I said I thought it was maybe 5% better. But he took a look at the area that has the worst flare-ups and he said that it looked significantly better than that. He said he would guess maybe 25-30% improvement! The worst area isn’t the easiest for me to look at (it’s on my upper thighs) and I didn’t think of taking photos to see progress so I really had no clue it was improving that much! But because of how this antibiotic works, a lot of the improvement would have been right away so if that was all I needed to take I should have seen much better results.

But since this medication is helping, my dermatologist wanted me to stay on it (plus the medication I take for the side effects). And he said he wanted to add another medication to the plan. The new medication is usually used for very different issues like high blood pressure (I actually have very low blood pressure) or kidney issues. But it can also affect some hormones in your body that can make the flares not as bad (different hormones than regular female hormones that fluctuate every month). Just like any medication, there are side effects, but from what I have been able to look up they aren’t too bad. The biggest one is that you can get dehydrated easier than normal because it can pull water from your body. I used to overhydrate myself, so I think this might not be too much of an issue for me.

The only downside to this new medication is that it will take a while to know if it helps me. It usually will take 3-6 months before you know if it’s working. That’s a long time, but at least I’m already able to manage the flares a bit with the antibiotic that I’m on. So I’m not as desperate to see results. So the plan is for me to come back in another 3 months for another follow-up to see if there are any results and to make sure that any side effects I’m having aren’t causing me too many issues.

While I would have loved a better result, I think this is still a pretty good step in the right direction. And hopefully, it’s just a matter of time before things get even better. There is still a surgery that my dermatologist feels is a very good option for me, but if I can get things under control a bit more I might have a better result. And I’m not in any rush to get surgery. The only reason I would want to do it soon would be if I was told that was the only thing that would help me. But for now, I’m just continuing to take the medications I was prescribed and hope that my next follow-up will have even better results.

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Default ThumbnailGoing In For A Doctor Appointment (or Making A Plan With My Dermatologist) Default ThumbnailPushing Through Feeling Off (or Hopefully This Doesn’t Last For 3 Months) Default ThumbnailAvoiding Something I Should Be Doing (or Scared Of What I’ll Find Out) Default ThumbnailFeeling Sick Just Isn’t Fun (or I Was Already Doing Nothing) Default ThumbnailSome More Virtual Therapy (or Trying Another Medication) Default ThumbnailAlmost Giving It A Full Try (or Ending Things Early)

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Almost Missing My Tumor Anniversary (or This Seems Like A Lifetime Ago)

Posted on April 21, 2021 | Comments Off on Almost Missing My Tumor Anniversary (or This Seems Like A Lifetime Ago)

On Monday, I was talking to my mom about something random (I honestly don’t remember what our conversation was about) and something made me think of my liver tumors and being a medical miracle. And then it hit me. On the 20th, it was the anniversary of me not having surgery! My medical miracle anniversary date is a weird one to figure out since it occurred over multiple days. But in my head, I usually think of the date I was supposed to have surgery as the official date marker. And for some reason, I just didn’t think about it happening this week.

This isn’t the first time I forgot an anniversary regarding my tumors. But I think remembering my surgery date is easier than the date I was diagnosed since it’s a date that sticks out much more in my memory. The date I found out about the tumors was not something I expected to have happened. The surgery date was something I prepared for and had in my calendar. But either way, sometimes it’s nice to know that I don’t have to think about my tumors as much as I used to.

So as of yesterday, it marked 4 years since I didn’t have to have surgery. Thinking about the surgery now is kind of a funny thing. There were a lot of things that made me worry about the surgery, but one of the ones that sticks out in my memory is how worried I was about having to miss Orangetheory for a month or two. I knew it would be ok and I’d figure out how to get back into my workouts, but the idea of not being at my regular workouts for a few weeks really worried me. Of course, now I’ve spent 13 months away from Orangetheory. I have continued my workouts which is something I couldn’t have done if I had surgery, but it is interesting to realize that concern isn’t as bad as I imagined it would be. If I had surgery, I know I would have gotten back to my workouts now. I have enough faith and belief in myself to not let something take away my workout motivation.

4 years ago, before I knew that my tumors shrank, I had no clue that I was going to be a medical miracle. My doctor had no idea it would happen since this is not what normally happens with these tumors. But it did and it’s been nice to see how my tumors have shrunk over time.

At my last check-in, they were so small that my doctor thought I might only need 1 more MRI and check in. That MRI was supposed to be this past October, but because of the pandemic, I decided to wait on it. It’s not urgent for me to get the MRI and originally I wasn’t supposed to have one this past October but wait until this October instead. So after confirming it was ok to wait, I did just that. And my plan is to probably have another MRI around October this year (I need to check in with my liver surgeon to confirm it can be scheduled since the original order was to go last year).

I do hope that when I go in for the next MRI, the one remaining tumor that can be seen will be so small that it’s gone from the scan as well. My other tumors have done that and the only one remaining is the one that was the largest to start with. Since my other tumors have disappeared, I have every hope that this one will as well. It was so small at my last scan that it was almost as close to gone as you can be.

Thinking back to my last MRI, it seems like this occurred so long ago. Yes, it’s been about a year and a half since my last MRI and over 4 years since I learned I had these tumors. So it has been quite a while ago. And knowing I don’t have to be as worried about the tumors as I was before is good for my mental health, especially in a year when we’ve all had so many things stressing us out.

Hopefully, whenever I am able to get my next MRI, I will be celebrating that it will be the last (unless anything crazy happens in my life). These tumors will always be a part of my medical history and something I have to be aware of for future medical decisions, but I’m ready for them to be fully a part of my past. And 4 years after being a medical miracle, I’m almost to that point.

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Default Thumbnail3 Years Of Being A Medical Miracle (or Just Enjoying Being Healthy) Default ThumbnailMedical Miracle Anniversary (or A Year Of My Liver Being A Badass) Default ThumbnailA Non-Surgery Anniversary (or Another Year Of Being A Medical Miracle) Default Thumbnail3 Years Knowing About The Tumors (or I Forgot An Anniversary) Default ThumbnailA Tumor Miracle (or I Wasn’t Expecting This) Default ThumbnailA Boring Tumor Check In (or Still A Miracle)

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