Tag Archives: health issues

My Eyes Had A Miracle Too (or I Wish I Knew What I Was Doing Right)

I had a doctor appointment to get my eyes checked this week. Originally, I had no plan of blogging about this. Eye appointments for me are pretty uneventful.

I’ve worn glasses or contacts my entire life. I think my first pair of glasses were when I was 3 or 4. I am pretty nearsighted (so I can only see things clearly that are close to my face) with a slight astigmatism. Nothing too fancy about my eyes other than my vision is pretty horrible and I have a strong correction in my contacts and glasses.

Honestly, the most exciting thing that happened regarding my vision in the recent past was when I broke my glasses. And even that story is pretty low-key. So when I knew I had my eye appointment this week I figured I’d go in, have them tell me everything this the same, and get some more contacts. I had been told that the brand of contacts I wear might have been discontinued, so that was the only thing that seemed like it might be interesting. Getting fitted for new contacts can be a pain and finding some that I like can take time. And the ones I have no are not tinted (I used to wear colored contacts) but have a slight tint to them so it doesn’t affect my eye color but allows me to find them if I drop them.

When I got to my appointment, everything started off pretty normally. They took my blood pressure (which was a bit higher than normal like it always is before a doctor appointment), the nurse took me back where I had to read the letters from the projection with my contact lenses in, and then I had to wait for the doctor. Once the doctor came in, she testing one eye and then the other before having my take out my contacts.

Next was the glaucoma test where they puff air into your eyes and then back to the exam room where the doctor tested different prescription strengths to see what made the letters on the wall look better. I always feel like it’s a trick when they ask you if version one or two look better. Sometimes they look equally as good and bad. And I don’t want to feel like I’m saying the wrong thing so I do take my time. But I know that there isn’t a right or wrong answer, just what I honestly see. And I tried to be honest, even when that means saying they both look good and bad.

When all the vision tests were done, I was expecting her to say that everything was still the same. That’s what I want because I’m hoping that in the future I can get laser eye surgery so I don’t need contacts forever. And you must have the same vision prescription for a bit of time before you can have laser eye surgery. But to my surprise, my vision is actually better now than it was the last time it was checked!

Both eyes are about 10% better now than they were before. And my old prescription is one that I’ve had for about a decade! I was used to my vision getting worse every year growing up, but it has been stable for so long. So to have my vision improve is not something I ever would have guessed.

My first question to the doctor was to find out what could have done this. I wanted to make sure that whatever I did is something that I keep doing. Maybe I can keep improving my vision! But she said that there isn’t really a reason that it could be getting better. She asked if I was using a computer less, but I’m actually using a computer more now. That was the only thing she could think of that would potentially help my vision.

I did talk to my mom after my appointment and she mentioned that maybe going off hormonal birth control improved my vision. Hormones can do funny things to you and I wouldn’t have really noticed my vision getting worse when I started the pill because I was used to my vision being worse every year at that time. I’ve done some research and that can sometimes be the case, but that seems to be a rare thing to have happen. But I’ve been getting all the rare and one-in-a-million medical scenarios lately so many this is just another one!

Because my vision is so significantly different, I had to get new contacts plus change my glasses prescription. They didn’t have any samples of the contacts for me to take home with me, so until the new ones get delivered I’ll be wearing the ones that overcorrect my eyes. It doesn’t feel too blurry, but after seeing how much clearer everything was with a weaker prescription I can’t wait until the new contacts get here.

And while I usually don’t update my glasses that often, because of how drastic this change is it was recommended that I change my glasses too. The day of the appointment, you get a discount on glasses. You get a better discount if you get new frames and lenses compared to just lenses, but even with the bigger discount it was still $20 to get the new frames. So I just decided to update my lenses. I placed an order for those and when they come in I just bring my glasses in and they will change out the lenses for me that day. I’m glad I don’t have to leave my glasses there since I do use them at nighttime.

With all the bad luck I had with medical stuff last year, it’s really nice that the good luck is continuing this year. I never thought my eyes could get better, but now that I know it’s possible I want to see if there is something I can do to try to help make this continue. I know that I will not be able to fully correct my vision on my own, but it’s always a good thing to have my vision better than it was before.

Another Therapy Check In (or Someone Sees Progress)

I only see my therapist every six months now, and my visit with him was this week. So much has happened in six months and I was trying to think about what I wanted to talk about with him before I went in for my appointment. I know that my time there is limited and I wanted to maximize my time. I knew that not everything was relevant to talk about, but I still took some mental notes on what I wanted to make sure we go over.

A lot of my appointments with my therapist are pretty basic check ins. He wants to make sure that I’m still making progress and doing ok on my medication. But there isn’t a lot for me to work through in therapy anymore. Coming to the realization that I just have bad luck genetically with getting an eating disorder has helped me a lot. I know that I didn’t do anything (or have something happen to me) that caused this and I just have to work on getting through it and figuring out good recovery tools for myself. Sometimes knowing that is tough, but it does make my therapy appointments easier.

The first update we discussed in my appointment was me not having the liver surgery. Even though my therapist has access to all my medical records, I knew he wouldn’t have reviewed everything that has happened lately. He was very excited about me not needing surgery and was asking what might have caused the tumors to shrink. There is really no medical explanation for it, but he agrees that my tumor visualization might have been a big part of it. Our minds are really powerful and can do miracles. He agrees that I should keep that up and see what happens when I have my next MRI in a few months.

We also talked about how I was struggling a bit with the idea of preparing for surgery for so long and then that just stopping. I told him how the unknowns unnerve me a bit and that I was finding it tough to reconnect to myself. I still struggle with a bit of disconnection with my body and I don’t know if that will ever be resolved because even if the tumors go away they could come back another time. My therapist understood why this is so tough for me, but he was encouraging me to work really hard to get through it.

He was talking about how we cannot set expectations for life and then fall apart when they don’t happen. Things can change and we have to be ok with going with the flow. And when something doesn’t go our way, we have to let go of the idea of what we thought would be and start thinking about what is. Obviously, those things are easier said than done, but I do need to work a lot on that idea. And to have him tell me that it’s ok that I struggle with this idea made me feel better because sometimes I wonder if it’s just me who seems so rigid in these ideas.

Even though there are things that I’m struggling with, the main things that my therapist was saying to me were all positive things. He said that he can really sense a change in me and sees that I’m so much happier. He can see that I’m figuring things out and I am making progress. I don’t always see the progress, but I know it’s easier for someone on the outside to see it. He knows that even if my eating disorder isn’t getting better right now, I’m building the skills and gaining the tools I’ll need to be in recovery. So eventually it will all connect and come together and I’ll be better equipped to be in recovery.

We also started to talk about the future and when I will be going off of Vyvanse. I cannot be on this medication my entire life (nor do I want to be on it forever). I am not in a place to be off of it just yet, and in fact we actually made a small increase to my dosage. But we went over how this is just a temporary tool and how I need to be preparing myself to eventually not have the crutch of the medication to help me through the day. It’s a bit scary to think about going off of it because when I don’t take it for a random day off, I notice that things aren’t as great. But to start working through an end plan is something that I know I need to do.

The biggest takeaway I had from this appointment was that I am making progress and improving even if I can’t see it yet. Getting to see myself through someone else’s eyes (and someone who has a critical viewpoint) is pretty powerful and really helped me feel more settled in what has been happening. My therapist wants me to focus on being more in the moment and accepting things as they come. If I am going to have a binge episode, he wants me to do it because I chose to do so and not because my eating disorder is putting me on auto-pilot. I’m getting much closer to that point so it’s good to know that that’s actually progress.

I won’t have my next appointment until December (6 months from now) unless something crazy happens and I feel like I need to be seen sooner. But I’m feeling much better about where things are now after this appointment. Some of the doubts I’ve been having have been reassured as good things and I’ve been given homework to try to work on over these next 6 months. Hopefully when I go back to see him again, he will continue to see progress and be happy with the steps I’ve made toward recovery.

Finding Some More Control (or How Medical Stuff and Dating Stuff Are Alike)

So many times in my life, things feel out of control. Even when it seems like it’s in control, there is always something that throws me off. Most of the time, it’s my food that is out of control and trying to control it seems to make it worse. And recently, it’s been my medical stuff that feels out of control and I can’t seem to get a handle on it. Even when I think that I know the plan, it seems like things are changing and I have to keep planning again.

One of the reasons many people have eating disorders is to find an element of control. I used to think this was crazy because I feel so out of control within my eating disorder. But it does make more sense the more I’ve researched eating disorders and have thought more about my situation. Eating what I want is an element of control. What is so horrible for me is having that control feel so out of control at the same time. I don’t like that I am subconsciously using food to control my life and I’m really trying to take a step back and think more than react.

I don’t find that my eating disorder is necessarily worse during times of feeling out of control, but I’m going to try to start tracking that now. Maybe I don’t realize that I am feeling that way when I have my binges because I am using food to mask it. It’s been interesting to reevaluate this lately because I’ve felt like I’ve known so much about my eating disorder in the past year or so. But I guess there is always more to rediscover and perhaps having this realization is a sign that recovery is on the way for me.

There’s not a ton I can do about feeling out of control with my medical stuff. There’s nothing I can do until my next MRI to see what is going on with my tumors. I’m still doing my daily visualizations and that’s pretty much all I can do. Whatever is going on inside my body is happening and I will have to wait a few months to see the results. It’s frustrating to not be able to know what’s happening inside of my body and it does make me feel a bit disconnected. But I am just trying to remind myself that I had no clue that the tumors were shrinking so maybe they are shrinking again now.

I am taking the few steps I can take with my medical stuff to feel more in control. I’m scheduling other doctor appointments that I know that I’ve needed to schedule but was putting off because I thought I’d be having surgery. I need to have some of the regular maintenance appointments like getting my eyes checked, seeing my dermatologist, and going for my annual exam. I can schedule all those and that at least gives me a bit of a sense of control in my life.

The other thing that is feeling so out of control is my dating life. I’m sure that everyone who is dating feels this way, but it’s been very different lately for me. I don’t know why all of a sudden I have more luck online and am finding more guys to meet. I don’t know what changed in my life, but I’m not complaining. But with dating more, there are more unknowns for me. I’ve been ghosted and stood up quite a bit lately. I’m not too upset but it does make me wonder why it’s happening to me. I know it happens to everyone, but of course my brain wants to tell me that it’s just me. And when I do go out with someone who I would like to see again, it can be frustrating to find out if I will see them again. I’m always on top of responding to texts and phone calls, but I know that everyone else isn’t like that. Again, I’m trying to not take it personally.

It’s so weird how my medical uncertainty and dating uncertainty seem to be so similar. But I guess when anything is out of control it can feel the same. And these are the two main things in my life that seem to be out of control right now and are taking up my thoughts quite a bit. And of course when I try to not think about them I only think about them more. I can only hope that even though these things are totally out of my control, I can go with the flow a bit more and enjoy whatever journey comes my way.

Time For Dental Work (or Maybe My MRIs Prepared Me For This)

When I went to the dentist recently, I found out that one of my fillings needs to be replaced. The filling has been in there for a long time and I knew that fillings (or crowns) aren’t forever and do need to be replaced over a lifetime. I’ve been pretty lucky the past few years. My teeth have always been a bit bad (it’s genetic) but I haven’t needed major work in a while. I’ve had lots of work done, but I’ve had a nice break and I guess that streak is over now.

As soon as I found out I needed work, my panic started. Part of that panic is because this time while they are hoping that this is just going to be a filling replacement there is a chance I will need a crown. It’s one of those situations where they weren’t going to know until they started the work and I had having unknowns in my life. But there was no way to find out what it was going to be until I had my next appointment so I tried to just deal with the sense of panic I had.

Fortunately for me, the panic wasn’t too horrible between my cleaning and the appointment to have the work done. I was panicking the day of my cleaning when I found out that there was work I needed done because that’s not what I was expecting. But I didn’t really feel panic again until the day before my appointment (and then it got pretty bad the day of my appointment). I know how bad things have been for me in the past and I just didn’t want that to happen again.

But I was trying to think about all the changes that have happened in my life since my last appointment for major dental work. I’ve been meditating for over a year now and that has been helping me stay calm in the moment (although it doesn’t seem to help the panic from building up before). That has seemed to help before with my MRIs.

And speaking of MRIs, I’ve had so many MRIs since my last dentist appointment and each of those have involved 2 needles (the blood work and then the IV for the contrast). I have been hoping that with all of those needles over the past few months that maybe my issues with needles has become less of a thing. I know that I’ve still been having blackout moments with needles in my recent blood work and IVs, but it has gotten significantly better. And since my incidents at the dentist were usually less than what I dealt with at the hospital, I was hopeful that this appointment and the needle would go a lot smoother than I feared it would go.

The day of my appointment was pretty tough. My appointment was right after I was done with work and I spent my entire shift in a panic and feeling sick. It was a sense of impending doom that I used to feel before a regular cleaning. I hadn’t had to deal with this feeling for a while, so it threw me off a bit. Fortunately, right now is the slower season for my day job so I didn’t have to help too many customers. I was still able to work, but I know that I wasn’t at my best while worrying about my dental appointment.

Once I got to the dentist, the panic was feeling pretty unbearable. I didn’t take my panic meds since they don’t really work that well when I take my eating disorder medication. And to me, right now it’s more important to manage my eating disorder than it was to stop some temporary panic. And I knew that as soon as the work started, the panic was going to go away and I would be fine.

The staff there tried to keep me distracted and calm while we waited for the dentist. They were asking me about what was happening in my life (I was telling them some of my crazy online dating stories), but I was still just anxious that the shots were coming and I wanted to get it over with. Everything in the dentist office looks so scary even though I know most things there aren’t anything that could hurt me.

Once the dentist came back, we got to the shots quickly. He does numb my cheek up with some gel before the shots so it does help a lot. And with the first shot I didn’t totally black out. But with the second shot (which I couldn’t actually feel because I was already pretty numb), I did black out like I have with my recent IVs. But it’s still a huge improvement over the last time I had to get shots at the dentist.

The last few times I’ve needed shots like this, it was for major dental work. Those appointments last quite a while and you have the option to watch a movie while they work. I should have known this would be easy when I wasn’t given the option to watch a movie but instead just had to wear protective eyewear. And this appointment ended up taking no time at all!

The drilling of the part of the old filling that had to come out took less than 5 minutes. Then they filled it back it and had to use the tools to dry it. Then it was only some checking of my bite and before I knew it I was sitting back up and rinsing my mouth out with mouthwash. The entire procedure (not counting waiting to get numb) was under 10 minutes.

I felt so silly when it was done for freaking out as much as I did. Then again, I had no clue it was going to be this simple since it seems like whenever I have more than just a cleaning it is pretty extreme. And I’m lucky that I have a dentist that is super on top of things since this could have been much worse if we didn’t catch it as soon as we did.

I still think I’m going to always have my panic issues at the dentist, but I’m glad that they are getting better. I’ve proven to myself for a while that I am doing much better with the cleanings. Now I’ve proven to myself that I can do ok with shots and bigger dental work. Hopefully I won’t need more major dental work for a while, but I know that there will be more in the future and I feel more prepared for it after this successful appointment.

Explaining Myself (or It’s Not Disappointment)

It’s been over a month since I was supposed to have surgery. By now, pretty much everyone in my life knows that my surgery was cancelled and the situation around that. I tried to email and text most of my friends as soon as I knew and many other people found out though here or social media. But every so often, I’ll run into someone who had no clue that I didn’t have surgery. Sometimes they are surprised to see that I’m looking so good or out and about and sometimes they are just assuming everything went fine and I forgot to tell them about it.

Each time I run into someone who didn’t know (or I meet someone new who is finding out about the situation), I feel like I have to explain the entire thing. I have tumors, they aren’t supposed to shrink, somehow they did shrink, we don’t know how it happened because I didn’t change anything in my life, I don’t know what’s next for me. And so often people tell me that I sound disappointed that I didn’t have surgery and I should be grateful that somehow I beat the odds.

It’s not easy to explain that I am grateful. I didn’t want surgery. I was stressing about surgery from the day I found out I would be having it. But at the same time, I spent 6 months knowing that I have tumors inside of my body and was excited to get them out of me. Now I only have 2 tumors so at least there aren’t 3, but I still have to be ok with the idea that there are 2 tumors just hanging out in my liver.

But even though I’m grateful, I’m still a bit skittish about this all. I am supposed to have my next MRI in about 4 months to see what’s going on (as long as there’s nothing that causes me to need a MRI sooner). Once that happens, I’ll meet with the surgery to make a new game plan. We have already discussed a bit of a plan where if the tumors are bigger I’m having surgery and if they are smaller we are going to keep waiting. But if they stay the same size as they are now, it’s a bit of a gray area.

My tumors are small enough and in a position in my liver that they aren’t as risky for me to keep as they were before. But there are still potential risks for me later in life if they stay in there. So there is this great unknown of what the next step will be or if I will be having surgery in the future. One thing I love about my OB/GYN and my liver surgeon is that neither of them are afraid to tell me that they don’t know the answer to something. But it’s a bit frustrating when neither of them know what the long-term plan for me will be.

And if I do sound disappointed about any of this, it’s because I had a plan in place. I was going to have surgery, the tumors were going to come out, and that was going to be that. Now I’m in another situation where I don’t know what my future will be and I don’t like that. I don’t know if in the fall we will have to plan for surgery and then I’ll need to do a lot of the same prep work that I had just done. Or maybe I’ll continue to be a miracle, the tumors will be smaller, and they will be small enough that there are pretty much no risks for me anymore.

The other weird feeling I’ve been dealing with is wondering at times if I totally imagined this all. Maybe I needed the surgery to make it feel real? I’ve had this feeling with some pretty intense news in the past. When I found out my mom had cancer or my grandpa died, I was almost wondering if I dreamt it and it wasn’t real. I was almost scared to talk to a friend to get support because I wondered if somehow I’d find out that it wasn’t true and would feel silly. And that’s a bit of what I’ve been feeling about my tumors. I made a huge deal about them and then it became almost nothing. I feel like I shouldn’t have made such a fuss about them (even though there was no way for me to know they would shrink). But nobody has been making me feel bad about things, only myself.

I know that most of you reading this understand my feelings. I’ve had several friends who have dealt with medical issues totally get what I’m talking about. It’s a weird feeling to want to be grateful but be worried at the same time. And hopefully as time goes by this feeling will be less intense and less often. It’s gotten so much better over the past month and hopefully the next month will make it less of an issue. And eventually, this will maybe just be a weird story that I can share from time to time without having any feelings attached to it.

Feeling Normal Again (or Happy To Be Back In Control)

My last few posts have been about getting back to my usual self. While I haven’t been writing about that too much, I think this is something that I’ve been struggling with for a while. It’s easiest to say that I’ve been struggling since I found out about the tumors because it seems like I’m splitting my life into before tumors and after tumors.

As soon as I knew about the tumors, my life got crazy. There was the scheduling of tests and planning for surgery, but that wasn’t what really got to me as much. It was the disconnect I felt with my body and life because I couldn’t understand how I could have massive tumors and not know about them. I felt out of control and not in charge of my own body and life. It’s such an odd feeling and I wasn’t able to express myself properly.

Control is a weird thing for me. Eating disorders are usually all about control. I question if mine is a control thing since I’ve likely had my eating disorder since I was a kid, but maybe it has a little to do with that. I control what I eat, how much I eat, and when I eat. While I do feel like I’m in a trace while I’m having a binge episode, maybe there is an element of control in that. So to feel out of control isn’t the best thing for my eating disorder.

And when I found out the surgery was cancelled, my first feeling wasn’t one of relief but one of feeling out of control even more. Now, not only did I have tumors and not know about them but they were able to shrink and there’s no way to know why and I can’t control the shrinking. Also, I didn’t know my tumors were shrinking so I was not able to control anything about that.

I really do feel like my soul and body have healed a lot in the past few days. I don’t know what triggered it, but getting back to my regular life is probably a lot of it. I’m a creature of habit and routine and being able to get back into my routine from pre-tumor time is nice. I haven’t had that since October (when we found out there was something wrong with me) and now that I’ve had a few days in my old routine it’s been very reassuring for me. There are still tumor related things in my life (no birth control pill, needing more medical tests, the possibility of surgery in the future), but this is the closest I’ve been to my old routine in a long time.

I’ve been having such a feeling of calm while doing things that I’m used to doing. Being back to a normal work schedule (and not having to work extra hours to bank them for time off) is so nice. I have free time 2 work mornings a week so I can do errands or just take my time getting ready for the day. I’m adding fun things back into my calendar and not stressing about how I’m spending my time after work (before, I was worried if I should be doing something to prepare for surgery instead of having fun). I’m able to get back to auditioning when opportunities come up and not worry about when the shoot dates are. And I can put the idea of my tumors in the back of my mind when I can.

I’m sure that the tumors are going to be something I worry about the rest of my life. Even if at my next MRI they appear to be completely gone, I will still be at risk for them to come back with any hormonal changes I will have in my life (pregnancy and menopause are the two biggest ones I’ll have to worry about). And if I am pregnant in the future, I will have to be monitored a bit more than most women. But I’m lucky that I have an awesome OB/GYN who has been doing so much research on the tumors and how to take care of patients with them. So I think I’m going to be fine as long as I have her as my doctor.

It’s weird how nice it is to feel like I have control again in my life, but I’m glad that I figured out what was making me feel off and how I could fix it. I’ve been wanting to feel normal again for so long and I guess it just took some self-discovery to figure out what it would take to make that happen.

MRI Time (or I Think Being Calm Is Helping)

I had what should be my last pre-surgery MRI this week. I needed this MRI so that we could see if any of my tumors have shrunk in the past few months. If they have shrunk, that will help me keep more of my liver during the surgery. It’s ok if they have to take some out since it does regenerate. But it would be nice to need less of my liver to regenerate because the tumors are smaller.

I previously had a monthly challenge to work on visualization to help my tumors shrink. I won’t know if this worked until I see my surgeon for my pre-op day, but I’m feeling happy with the work that I had done. I don’t feel like there is anything else I could have to help them shrink. And if they don’t shrink, that’s ok too because it wasn’t a guarantee they would get smaller after I stopped hormonal birth control. I’m prepared for anything when I see the MRI results.

Before a year ago, I had only had 1 MRI in the past and that was for my hip. But since then I’ve had 1 breast MRI and 2 liver MRIs before this most recent one. So this one was my 4th MRI in under a year. And all of those MRIs involve contrast which means I had to have an IV put in (which isn’t fun since I still don’t do well with needles). And while I’m not super claustrophobic, being inside the MRI tube isn’t fun and it can feel like the sides of the tube are closing in on me. I’m lucky because my head is toward the outside of the tube so I can tilt my head back and see a bit of the room behind me, but it can still feel very closed in.

For the MRI this week, I was feeling a bit stressed about it. Some of the stress was unnecessary (like feeling guilty that this was during work time but I had already banked the hours to cover it) but I also know that I’ve done well in past MRIs and just wanted to make sure that I would be the same this time. I’m always worried that for some reason things will be different this time (I’m like that with the dentist) and I just wanted to have a smooth MRI day.

Things started off rough with me getting there 4o minutes early because I had put it in my calendar at the wrong time, but I figured that is better than being late. And when I checked in, they let me know that they were running 30 minutes behind so I was worried I wouldn’t be home to start work when I told my manager I would be. But somehow, they ended up getting back on time quickly and I was brought back to the MRI area only 5 minutes after my appointment time.

I feel like a pro at MRIs now. I know not to wear things with metal on it so all I had to take off when I was going in was my sweatshirt and my shoes (the tech there was impressed that I wore a sports bra with no metal clasps and knew to do so). I got onto the table and the techs got everything set up with the various pillows to have me in the right position for the MRI. And then I got my IV in (I had warned them that I pass out but I came back very quickly and it wasn’t too bad) and got into the MRI tube.

Since this was my 3rd abdominal MRI, I knew that I would hear prompts to hold my breath at various times. The first time I had to do this, I wasn’t really prepared and since I was nervous it was tough for me to hold my breath when I needed to. This time, I focused on taking steady deep breaths when I didn’t have to worry about holding my breath. When I had to hold my breath, I tried to count in my head to distract myself. And I tried to zone out while the machine was going since it is so loud and can make it seem more claustrophobic for me somehow.

I have to say that this MRI was the easiest one that I’ve done. It does help that I knew what to prepare for, but I could have said that for my second liver MRI and that one still wasn’t as easy as this one was. When it was done, I was actually very surprised it was over. I thought that maybe we were only halfway through or something. But it had gone really easily and I never felt too panicky or anxious while in the MRI tube. The worst part was when the dye went in my IV, but it was not bad at all and more just a weird sensation in my arm.

I really wished I could have looked at the computer to look at my tumors. I know I couldn’t read it properly, but I am curious what things look like now. I did get a little glance at one image from my MRI where you could see the 2 smaller tumors. But since I’m more familiar with the big tumor, I can’t tell too much from looking at the image of the other ones.

In about a week, I meet with the surgeon to go over all of this and to do what should be the final pre-op step. I’m a bit anxious to hear what he will say, but I know whatever he says that things will be ok. I’m going to continue to focus on being calm and taking deep breaths since that worked so well for me in the MRI. I never expected that test to go as smoothly as it did so clearly this plan is working for me. Hopefully it works for me while in pre-op appointments, surgery, and recovery too!

Surgery Shopping (or How To Prep For The Unexpected)

I know I’ve posted a lot about my liver surgery lately (and I will be posting more about it over the next few weeks). I’m now 2 weeks away from surgery and there is so much that I’ve been trying to get done or need to do. I’m still trying to have a lot of fun, but surgery stuff is taking up a lot of my time.

I have the stuff I expected like various doctor appointments and tests. I’ve already done some blood work and today is my MRI. I’ve got my official pre-op appointment next week and that will consist of multiple doctor appointments at one time so I can meet with the surgeon, the anesthesia team, and possibly the inpatient team. I’ve also been working more than normal because I’m banking hours at work. I can’t afford to take time off (I don’t get paid time off at any of my jobs), so I’ve been working extra hours unpaid to cover the time I won’t be working coming up. I’ve got all the hours banked that I think I’ll need, but that has taken a lot of time in the mornings that I usually do other work.

I’ve also been trying to get things ready to be in the hospital for a while. I’ve been getting ideas of things to have with me from friends who have been in the hospital for a while before. I’m hoping the hospital has decent wifi because I have a feeling I’ll be watching a lot of Netflix or Hulu there (also, if I feel up for it then I could even work from the hospital). I’ve also gotten some dresses that are easy to put on and are cheap to wear after surgery. There’s a chance that things with waistbands won’t work for a little bit for me so dresses seemed to be the easiest solution. I also know I might have surgical drains when I go home, so I found these awesome sticky pockets to put in my clothes if I need them.

I still have a pretty decent list of things I still need to get for my time in the hospital and while I’m recovering with my parents. Some things I expected to be easy, like getting some slippers to have with me, but somehow they haven’t been easy to find in stores. I’m guessing I’ll be doing a big Amazon order soon. I might wait until after my pre-op appointment so I know what else I might need. Thank goodness for fast shipping with Amazon Prime! I’ve been told I might get a list when I go in for the pre-op appointment, but if any of you have been through any type of abdominal surgery and have suggestions for things I should have please let me know!

And then of course there is getting my house ready for this all. I will be doing some big cleaning because I don’t want things cluttered when my parents are here and I don’t want things to feel dirty when I am back home. After I’m out of the hospital, I will be recovering with my parents so they can help me out with things or buy things I forgot about. But I still want to try to get as much done now as I can. One thing I was trying to do but have been slacking on is getting some food made and frozen so it’s easy for me to eat at home even if I’m tired. I don’t want to go back to ordering delivery food (plus I’m guessing I’ll be on a restricted diet so I want to have food that I made and know what’s in it).

I know it sounds like I’ve got a handle on things and seem really prepared, but I don’t feel that way at all. There are still so many unknowns with this entire thing and a lot of the answers won’t be things I can really know in advance. I have no idea how my body will react to this all and I can’t prepare for what I don’t know will happen. It has been giving me a pretty steady level of anxiety lately, but nothing as bad as a regular panic attack. And I have had a few minor attacks but fortunately my friends and family have been able to calm me down.

When things were 2 months away or even 1 month away it seemed like I had unlimited time to get ready and that it wasn’t going to be soon. I think it really hit me when I had 3 weeks left how soon this was all going to be. I’m very lucky that I’ve had time to prep for this and it wasn’t an emergency surgery where nothing could be done ahead of time. But sometimes having prep time is the worst because I can analyze things to death. I’m trying to stay as calm as I can be which is why I set my monthly challenge to be being calm and taking more deep breaths.

Over the next 2 weeks, there will be posts about preparing for surgery but I will also have some fun posts in there too. And I am hoping to keep this blog going regularly while I’m recovering, but of course I don’t know how I’ll feel. But I do promise that if there are some days I can’t blog I will get back to writing regularly. I’ve been doing this every weekday for so long, and the idea that I might miss a day does stress me out a bit. But I hope that you all will stick with me while I get through all of this and hopefully I can find some fun things to write about while I’m recovering!

I’ve Got A Surgery Date (or Almost The 2 Month Countdown)

When I found out I needed liver surgery, I knew I would be waiting a little bit before having surgery. First, I want my parents to come take care of me when I have surgery and waiting until at least April was best for their schedules (this isn’t an urgent surgery so there is no rush for them to get here). Also, waiting does give my body a bit of time to hopefully shrink the tumors. And finally, I am hoping to lose a bit more weight before having surgery.

I had things set on being the middle to the end of April (I have a 5K in the beginning of April that I don’t want to miss), but when I saw my surgeon the last time the April schedule wasn’t open yet. So I was waiting on the surgery schedule to have April up so that my surgeon could pick the best day for it. He knew that I was looking at the week after Easter and had my permission to just give me whatever date he could that week as soon as the schedule was up. My surgery is possibly going to be an all day thing, so I might be the only patient he operates on that day.

I had been waiting and waiting for the schedule to open up and finally at the end of last week I got a phone call from the surgery scheduling assistant. My surgery has been booked and I’ve got just over 2 months to go before the tumor (or tumors) will be out!

Even though I’ve known about this for a while, having an actual surgery date makes everything seem real now. I have almost all my doctor appointments leading up to surgery booked (I just need to have my final MRI scheduled) and I know the timeline of when everything will be happening. I’ve let my agents know I will be unable to audition or work then and I’ve figured out exactly how much longer I have to bank hours at my box office job. I’m hoping I can still work while I’m recovering, especially in the hospital when I’m scared I’ll be bored, but I am banking enough hours to cover me if I cannot work the week and a half I’ll be recovering with my parents.

During my pre-op appointments, I know that someone will go over with me some of the things I’ll need to bring with me for surgery and my hospital stay. I’ve never had inpatient surgery before, so I am a bit nervous about staying at the hospital. I’m a bit set in my ways and in my routine, and I know this will throw me off. I’m looking online at things that people recommend to have for overnight hospital stays or abdominal surgery recovery. If any of you have been through either, I would love some suggestions.

This have been moving pretty quickly after I got my surgery date. I have several appointments scheduled now, my parents have planned their trip down here, they have found a place to stay, and I’ve got a ticking clock in my head of how much longer I have. I’m sure that since I’ve got about 2 months to go that soon I won’t think about it as each day counts down. Eventually I’ll just have it in the back of my mind instead of the front of my mind.

The only downside with having some time to get ready is that I have time to get ready. I have the time think about what I want to do before surgery or to have with me in the hospital. I have time to do a lot of research and read the good recovery stories along with the bad ones. I have time to think about what this will mean for the rest of my life. Since they are taking out my gallbladder, my diet will need to change a bit. And for the time that my liver regenerates, I’m sure I’ll have a restricted diet too. And after surgery, I will have scars on my stomach for the rest of my life. The scars on my hip have faded to the point you can’t see them anymore, so maybe the ones on my stomach will do the same. But I will always know that they will be there.

I’m going to try to limit the number of posts I do about the upcoming surgery. I’ll do posts when I have updates or appointments so you all know what is happening with me. But this surgery is just a minor roadblock in my life. Once I get through it, things will be different but I will be fine. This is just another crazy story that I will be able to tell one day at a party (I’m sure saying I had a tumor the size of a baby’s head taken out of my liver will be a good cocktail party story one day).

I’ve got about 2 months to go before this is all pretty much behind me and I can just focus on recovering from surgery, getting back to my normal life, and moving forward.

Adventures In Healthcare (or Trying Not To Be Too Political)

Today is the inauguration of President Trump. Those of you who follow me on social media probably know how I feel about this, but I don’t want this post to be all about political parties. But with a new president coming in, there are some things that do concern me as a citizen of this country.

Almost all of the things that concern me are related to healthcare. Mainly, the idea that the Affordable Care Act will be repealed (and potentially replaced with something to be determined later). While I always have had healthcare, it wasn’t easy for me before the Affordable Care Act. And now with the threats that it will be taken away, I’m worried for me and the millions of other people who are in a better situation because of it. And so on inauguration day, I want to share my story of why the ACA matters to me. Maybe you don’t care if it goes away, but hopefully you can at least understand why it is something that scares me.

I was born into having amazing health insurance. Thanks to my dad, I had great coverage through Kaiser growing up. My insurance was covered under his job and we didn’t have to pay a monthly bill and almost everything I needed was covered under my insurance. I was totally spoiled with my awesome insurance and didn’t realize it wasn’t like that for everyone. I just assumed everyone could go to the doctor and it would be taken care of. Even with my hip surgery and all the craziness around that, it was completely covered and all of my bills said that the patient responsibility was $0.

When I aged out of my dad’s insurance coverage (which fortunately was right after my hip surgery), I applied for regular Kaiser insurance. All of my doctors are with Kaiser so there was no question to me that I would continue using them for my healthcare. I applied and assumed that while it wouldn’t be free anymore, I would get insurance and everything would be fine. But it wasn’t.

I got a rejection letter from Kaiser saying that they would not cover me because of my pre-existing conditions. Among my pre-existing conditions were my hip issues, my eating disorder, my weight, having a history of strep throat/tonsil issues, and having a history of gallstones. I was not a desirable person to insure and Kaiser didn’t want to cover me. Being rejected for pre-existing conditions sucked. I had an option to get COBRA for a year or so, but it would have been something like $3,000 a month to be covered.

Fortunately, I talked to someone at member services at Kaiser who explained that there was something called conversion insurance. Basically it was insurance for patients with pre-existing conditions that are considered too high risk to insure but previously had Kaiser insurance so Kaiser didn’t want to reject them completely. I was eligible for conversion, but instead of being about $100 a month (which is what it would cost for a woman to have regular Kaiser insurance), it was over $500 a month. That’s a lot of money, but because I needed health insurance my parents helped me out so I could get insurance.

I didn’t have as amazing of insurance as I did before, but it covered most of the things I needed. When I had my tonsils out, it cost $250. When I needed birth control refills, it was $30 a month. The out-of-pocket costs without insurance would have been insane, so having expensive insurance with higher deductibles and costs was worth it.

Then the ACA passed and I became eligible for regular insurance again! Not only that, Kaiser could no longer charge me more because I am a woman so things would be even cheaper than I thought. My new insurance is about $250 a month (I’m also eligible for subsidies because my income level is below the limit) because I got a silver level plan knowing that I would have more doctor appointments than the standard patient. And this was before the liver tumors so I’m more grateful now that I’m covered.

When I recently had my breast MRI, there was a debate if it would be fully covered by Kaiser. With my dad’s insurance, it would have been totally free. With my conversion insurance, MRIs were not a covered benefit so I would have paid full price. With my ACA coverage, MRIs are $250 but cancer screenings are free so it wasn’t known what my MRI would be classified under. I didn’t pay that day, but the other day I got a bill.

I got charged the $250 that is my standard MRI deductible. But you can see that if I had my old conversion insurance, it would have cost almost $2,700 to get this cancer screening that my mom’s geneticist recommended that I do. To know that a test that doctors felt I needed could cost more than my rent is ridiculous. I don’t know how people could afford that if they had to pay the full rate. That’s so expensive and it made me even more grateful for my ACA coverage.

With my upcoming liver surgery, I know I’ll hit my out-of-pocket maximum for the year. That maximum is about $8,000 (much lower than the $50,000 maximum my conversion insurance had) and while that is still a lot of money, it is a necessary cost and a fraction of what it would cost if I wasn’t insured. I’m not going to worry about the money now because I know I will get help to pay for it and my health is more important than money. Plus, on the positive side, I believe that once I hit my out-of-pocket maximum that I won’t have to pay for doctor appointments for the rest of the year!

I know I will be ok for 2017, but I’m scared what will happen to me after the year is done. If the ACA is gone, can Kaiser tell me that they don’t want to insure me anymore? I’m even more high risk with my pre-existing conditions now. If an insurance company could reject me, I totally understand why they would want to. But for me, I know I need to have insurance because of my pre-existing conditions. I will always have my hip issues, I will be considered high risk if I ever get pregnant because of the tumors (even if they are taken out, there is a risk of them coming back with pregnancy), until I stop getting treatment for my eating disorder that will always work against me if an insurance company can reject me, and I’m assuming that having to have part of my liver removed will make me even more high risk.

I know a lot of people get insurance through their employers and they are mad that their premiums have been going up. But that doesn’t have anything to do with the ACA. Premiums have been going up for decades every single year because health insurance companies can do that. It’s the same as car insurance premiums going up or home or renters insurance going up. And for those people who will have nothing change with their health insurance if the ACA is repealed, I can understand why they don’t care too much either way. But for me and millions of other people, losing the ACA can be horrible. For me I know it won’t be a death sentence, but I have friends who could have their lives at risk if they can’t get insurance to help pay for life-saving medication. Hoping that you can afford to live shouldn’t be something that people think about.

I know that there has been a lot of backlash from the threat of repealing the ACA, especially with no replacement in mind yet. I’m hoping that politicians will listen to how scared their constituents are about this. Maybe President Trump will worry about being popular and liked and realize the majority of people do not want the ACA to go away (or go away before we know what the replacement will be so we know we won’t be uninsured). I can only hope that next year, I will not be worried about this and I will still be able to get the healthcare that I need to stay healthy.