Posted onMay 19, 2020|Comments Off on Back To Back Doctor Days (or At Least This Was A Virtual Appointment)
Last week, I was at urgent care on Monday. I hadn’t planned on being at the hospital for any doctor’s appointments any time soon, so that was something that broke up my routine a bit. But the next day, I had a scheduled appointment. This time, it was another appointment with my therapist. But it had already been planned to be a virtual one, so I knew I would be able to stay home for it.
When I scheduled the appointment, I was still working my normal hours. So I had a lot of free time before my appointment. Also, this appointment was originally about the new medication that I was put on, but I had already stopped that medication (after emailing with my therapist). So I had a lot of time to think about what we would discuss.
I was still in a lot of pain and discomfort from the cellulitis, but I knew that wasn’t something I necessarily had to discuss in my appointment. But it still made me laugh a bit when my therapist opened our appointment by asking how I was doing. My only response was that was a loaded question. I explained that mentally I was doing the best that could be expected and if I was not stressed or worried that maybe that would be concerning. Fortunately, she understood exactly what I meant. Her main concern was that I wasn’t having any symptoms that were concerning me or that I was doing significantly worse than before.
We did discuss the medication I was briefly on and I explained that the reaction I was having could have something to do with the state of the world, but I wasn’t sure. And I wasn’t willing to risk trying it because the symptoms were concerning (I was having some panic attacks and I felt my OCD getting worse). And I think she agreed with me that it would be very difficult to know if a new medication is helping me. And if I tried something new and it did help, maybe it only helped because of how crazy everything is and in normal circumstances, it wouldn’t be helping. It’s weird to feel like I’m putting things on hold, but that’s the best case right now. I want to try some other medications to see if they help, but I don’t feel ok doing it right now.
I’m glad that my therapist understood how I felt and didn’t think I needed to worry about trying anything new right now. She agrees that my focus should just be on being ok and feeling safe with how things are. And when things start to normalize a bit, then I can start working on seeing if another medication can benefit me or not. I have another virtual appointment in a few months, and maybe by then, we will be in a new phase of reopening. I’m guessing the appointment will stay virtual, which is fine with me because I do prefer those. But it would be nice to get to a point where I can start working on bettering myself and not just getting through this.
Posted onApril 21, 2020|Comments Off on 3 Years Of Being A Medical Miracle (or Just Enjoying Being Healthy)
I’ve said before how the date of when I became a medical miracle is a bit hard for me to determine. I’m not sure if I should consider the day I had the MRI that showed my tumors were shrinking as the day. Or maybe the day one of my doctors emailed me to say that it looked like the tumors were shrinking. Or when my liver surgeon called me to tell me for sure that my tumors were shrinking and that he recommended I cancel my surgery. So even though the date isn’t really a date that I got any information, I have considered the date that my surgery was supposed to happen as the marker for being a medical miracle. And yesterday, it marked 3 years since I was supposed to have surgery.
I don’t necessarily do anything to celebrate being a medical miracle, but I do acknowledge it and take time to remember how lucky I am. I know that if my tumors didn’t shrink, surgery was necessary. My tumors were big enough that they could be life-threatening. Not having surgery would have been a very dumb choice. But even though I knew that I needed that surgery, I wasn’t looking forward to it and I was scared about so much. I’m so glad that I didn’t have to have that surgery or deal with the recovery. I haven’t had abdominal surgery before, but I imagine the recovery would be worse than it was for my hip surgery. And there would other things during recovery that would have been tough for me.
One of the things about recovery that scared me was not being able to go to Orangetheory. I was worried that I would lose all momentum that I had been building in my workouts and that I would be so far back when I finally could work out again. Of course, right now I technically have no way to go to my workouts. I am working out at home, but it’s not the same. So it’s a bit funny that something that I was so worried about is a reality that I am dealing with right now. But I am lucky that there are OTF at Home workouts that I could do and that wouldn’t have been an option if I did have surgery.
I was worried about what the surgery might do for my mental health. I didn’t share this too much, but I was worried that having a big scar might make my body dysmorphia worse or that something about having surgery would trigger my panic/anxiety disorder or even my eating disorder. Surgery is a big unknown so there isn’t a way to know how you would react to it. I was hoping that surgery wouldn’t affect my mental health, but it was a big concern that I had about it.
And I was also worried that the surgery wouldn’t be the only one I needed. I knew that I might need another surgery in the future to get rid of one of the tumors if they couldn’t get all of them in one surgery. And I had been told that they could take my gallbladder out when doing the surgery, but I worried that something would happen where they couldn’t and I would need that surgery at another time. I’m actually very lucky when it comes to my gallbladder because it turns out that many of the issues I was having with it was related to the tumors and their size, so even though I didn’t have surgery I have had very few attacks in the past 3 years. I technically still need it out, but it’s not as necessary as it was before.
I am grateful every day that I didn’t have to have surgery. I’m grateful that I didn’t have to go through what could have been a big change in my life. I didn’t have to deal with as many unknowns (even though I do still deal with some unknowns now regarding my tumors). I was able to keep living my life as normal without a disruption. But even though I am grateful every day, I am always extra grateful when it’s my medical miracle anniversary. It’s been 3 years since I have known that my tumors are shrinking and there is still no medical explanation for it. But I feel so lucky that it happened to me.
I am supposed to have another MRI in about 6 months, and if the tumors continue to shrink, that will be my last one scheduled. I might have them every couple of years, but I won’t need annual ones any more if they are smaller. And if by some chance they grow, I will have surgery and I will be ok if that happens. But for now, I’m just focused on being grateful for what happened to me.
Posted onMarch 17, 2020|Comments Off on Doing At Least One Scheduled Thing (or The Last Normal Thing For A While)
When I was writing my posts about coronavirus before, I think I was hoping that it wouldn’t get as bad as it could. As I’m writing this, Los Angeles has pretty much shut down. Grocery stores and pharmacies are still open. We can order delivery food (but you can’t eat at a restaurant). And some other essential places are still open. But for the most part, things are closed. It’s weird and I’ll write more about that coming up.
Everything that I had scheduled for the next few weeks have been getting canceled one by one. The only thing that didn’t get canceled was a doctor appointment I had scheduled for yesterday to get my eyes checked. I am almost out of contact lenses and needed to get a new exam before I could order more. It took a while to get this appointment, so I didn’t want to cancel it. But I had no clue if it would still happen or not. I assumed it was still on because I didn’t hear otherwise, so I headed over there a bit early since the office is in the same shopping center as a few stores that I knew would be open and possibly very crowded.
Driving there was weird because there weren’t a ton of cars on the road. I know that’s a good thing because people need to be staying home, but it still felt eerie. And getting to the office for my appointment continued to make me feel uneasy. There was a checkpoint to get through before I could go inside (which I totally understood since they need to make sure people aren’t sick) and then it was empty in the waiting room. I’m used to having to sit and wait a long time for eye appointments, but I was the only one there. And in the waiting room, all the seats were moved to be on their own and apart.
I know this is all done for safety and health, but it doesn’t change that it just feels odd to me.
I was called back pretty quickly and got through every section of the appointment back to back. In the past, I’ve had to wait in a waiting area between different sections of the appointment. This was so fast. Before I knew it, I was seeing the doctor to see if I needed a new prescription (one eye got a bit worse so I am getting a stronger prescription) and we were discussing if I was happy with my brand of contact lenses. I said I was and I was brought over to where I could order some boxes. I got a year’s supply since that’s what I usually order when I get new contacts. And I was done after that. I was in and out in under 25 minutes which I think is a record for me.
After that appointment, I headed over to the main Kaiser building to make a stop at the pharmacy. I didn’t have any prescriptions to get, but there were a few over the counter items that I wasn’t able to find at a regular drugstore and thought I would give a hospital pharmacy a try. It was weird in there too because they had the seats blocked off so only one person could sit in each seating area. And just like at my eye appointment, it was empty inside. Even when I’ve gone at a weird hour, I’ve never seen it without at least a few people inside.
I was able to get almost everything I was looking for, so that was good. And then I headed back home to not be in public. I know that I’m lucky that I have a job that I already work from home, so I don’t have to worry about work. And I was able to get things at the grocery store so I have more than enough food for the next two weeks. I am going to try to go outside for walks and things if I can, but for the most part, I’m going to be inside my house for the next 2 weeks (or longer if things are closed longer). It’s weird to think that my appointment was my last normal thing for a while, but I know that it is for the best because we all have to work together to stop the spread of coronavirus.
Posted onMarch 12, 2020|Comments Off on Some More Virtual Therapy (or Trying Another Medication)
I’ve been doing my appointments with my therapist virtually for a while. It’s been a great setup for me because I don’t have to deal with driving in traffic or paying for parking. I know there are some rules about my therapist needing to see me every so often, but I believe that the video chat appointments fill that requirement.
But with all the issues with COVID-19, I was even more grateful for being able to do my appointment at home. I don’t want to be around people when I don’t need to. And it turns out that they have been converting all the in-person appointments to virtual ones, so even if I had a regular appointment originally scheduled I would have had a virtual one.
Most of my therapy appointments are about checking in with how I feel on my medications. It’s not as much about talking things out as it used to be (or as some people think therapy is all about). I’m not saying those things aren’t valuable or what therapy should be about, it’s just not what my current appointments are about. I’ve done a ton of talking things out, now we are working through finding a solution.
I’ve been doing pretty ok with Vyvanse for a long time, but lately, I’ve noticed it not taking the edge off the same way it used to. It’s something that I’ve become more aware of and I’ve been tracking it knowing I could discuss it at this appointment. And I did bring that up to my therapist this time. I said that I didn’t know if my body was getting used to the dosage but that I didn’t necessarily want to increase it. And she agreed with me because I am toward the top dosage that has been studied. There are people taking double what I take, but that’s not recommended nor are there a lot of things known about the long-term effects of doing that.
So my therapist recommended that I should consider trying adding another medication to my plan. I’m definitely open to doing that, but I also am hesitant about that. The last time I added a new medication, it didn’t go well. But I also know that I’ve added medications several times with no issues so I can’t just think about the rare times that it wasn’t so good. And we did go over some of the medications that I’ve taken before and how I reacted to them.
There have been a few studies about different medications that people take for anxiety or depression that can help with getting into recovery from an eating disorder. I have taken some of these medications with no success or causing some bad side effects. So those were immediately removed from consideration. What I will be adding will be a different medication that is also a mood stabilizer. The idea of taking a mood stabilizer is that it can increase patience and reduce impulsive behavior. Both of those things could be good in multiple aspects of my life, but it makes a lot of sense with my eating disorder. So I agreed to try out this medication to see if it helps.
I’m going to starting taking a half dose for a week before moving on to the full dose my therapist wants me to be on. And after 2 months, I’ll be doing another virtual appointment to check in and see if it’s helping me. Of course, if I have bad side effects as I did on the last medication, I can message her and we will create a plan for me to go off of it. But I’m trying to stay positive and hope for the best. I want there to be no bad side effects and only the positive side effects that I want to help me.
This medication isn’t as strong as the last one I tried so it might take a while for me to see any results or side effects. That’s why my appointment is set for 2 months from now. Most people don’t notice a change for almost a month, so that gives me a month to see any changes and a month to decide if I like those changes. I’m not thinking that this is going to be a miracle medication and make everything better, but anything that helps would be so amazing.
Posted onDecember 5, 2019|Comments Off on My Easiest Follow-Up So Far (or I Might Only Have One More Of These)
I’ve already posted an update about my liver tumor because my doctor emailed me my MRI results. I was grateful that he emailed me because there was a bit of a delay between my MRI and my follow-up appointment. Usually, those appointments are within a week of each other, but there were some delays in getting my appointment scheduled. So having that email so I didn’t have to worry or stress for all that time was nice. But I still had my regular appointment and I knew I’d get a bit more information then.
This appointment was so easy and simple. My doctor was happy as always that the tumors are shrinking and that only one can be seen now. He has another patient with the same tumors that I do and her tumors weren’t able to shrink at all, so she had the major surgery that I was supposed to have. I know that my doctor and I said that maybe delaying the surgery as I did would allow the tumors to shrink, but it seems like I’m still an oddity with this. I’ve heard from people on social media who have these tumors as well and none of them have been able to have theirs shrink. So I continue to be grateful for the medical miracle in my liver. And I know that it still baffles my doctor that it happened and he can’t really give me an explanation of why or what I did that others didn’t.
My remaining tumor is now in a place where surgery isn’t even an option anymore. Before, we discussed that he could remove the remaining tumor if I had my gallbladder out. But now, my tumor is in the middle of my liver (instead of on the side), so it can’t really come out no matter what. This is actually a good thing because having it inside my liver makes the risk of rupture lower. But I do still have to be aware if I have sudden and severe abdominal pain because that can be a sign of rupture and that’s always going to be a risk for me.
My doctor and I discussed things that may happen in my future that can affect the tumors. Pregnancy is no longer a huge risk (but I will always be high-risk if I’m pregnant) and I probably wouldn’t need a baseline MRI if I got pregnant. Fertility medications are still risky, but my doctor thinks now that they might be an option for me depending on what medications and how long I’d be on them. I hope I won’t need to go through fertility treatments, but I’m glad it’s more of an option now than it was before. And hormone replacement therapy is still one that my doctor isn’t sure about. Because they are replacing hormones (instead of adding them), they shouldn’t be risky. But you take them long-term which is risky. He said that for now, I shouldn’t worry about it and when it gets closer to that time in my life we can reevaluate and maybe there will be more research.
My doctor and I also discussed how he already ordered a repeat MRI in a year. I was a bit confused to see that because I thought after this MRI we were going to wait 2 years. But he said that at the rate my tumors have been shrinking, in one year there may be no tumors visible. 2 out of 3 are already there, it’s just this last one that can be seen. So if there are no visible tumors in a year when I have my next MRI, that will be my last one. Even if the last tumor is still visible, as long as it doesn’t get larger it’s small enough that I don’t need to be monitored. So assuming that everything continues going the way it’s been going, my MRI next year will be the last regular one. I may get them in the future if I am pregnant, use fertility medications, or hormone replacement therapy; but I won’t need another scan unless one of those things happens.
I’m equally excited and nervous that the MRI in a year will be the last one that is scheduled. I’m excited that I don’t have to do these appointments and that it will mean that I have essentially graduated from being monitored. But I’m nervous because I still have that disconnection with my body and I’m worried I will be scared that the tumors are growing and I don’t know it. But I already have those fears even with the annual MRIs so I don’t know if it would be that bad. I know that if I’m ever really worried I could get another scan, but I’d like to be in a place where I don’t think about it. And I’m not going to worry about not having regular scans until I’m told that I won’t be getting them anymore.
The last part of my appointment was getting to see what my MRI scans looked like. This time, it wasn’t as easy as it was before to see the tumor because it’s gotten so small. But it’s still there when you know what to look for and where to look. But compared to all my other MRIs, it’s tiny and I’m still shocked how much has changed between each scan.
And when you compare the tumor from 2016 to now without seeing the progression, it’s even crazier how much it has shrunk and the difference between then and now.
After looking at the scans with my doctor, the appointment was done. My doctor said to just keep doing what I’ve been doing because clearly it is working. But there’s still no medical explanation on why they shrink when other people doing the same things that I do don’t have those results. I’m definitely lucky and I’m grateful that for some reason I’m a rare case like this. And maybe in one more year, I’ll have nothing showing up in my scans and then I can consider the miracle to be complete!
Posted onNovember 13, 2019|Comments Off on A Quick MRI Turnaround (or At Least I Have Some Answers)
I know I just wrote about getting my MRI yesterday, but the actual scan was last week on Thursday. Typically, I have my scan and then within a week, I have my followup appointment with my liver surgeon. Occasionally, I will get my MRI results sent to me a bit sooner by one of my doctors, but I don’t expect to have answers until I have my appointment.
This time, when I was scheduling my MRI, I was told my liver surgeon was on vacation for 2 weeks after my scan. So the soonest I could get my followup appointment would be the week of Thanksgiving. While I didn’t love having a big gap between the scan and the followup, I didn’t really have an option unless I wanted to do the MRI later. So I booked those appointment times and tried not to think about it too much. Even though my scans always show the tumors smaller, I do worry a bit that for some reason they will be growing again. But I know that the chances of that happening are really tiny, especially with my history.
So after my scan was done last week, I tried to not think about the results at all. I knew that it wasn’t going to be anything horrible even if I was told that they were growing again. The worst case would be that they were growing and that I would have the surgery that I had planned for originally. And I’ve already put so much thought into that surgery so I wasn’t as scared about it as I was before.
I got a notification on Monday evening that I had a message from a doctor to read. I thought maybe it was one of my other doctors seeing the MRI report and just forwarding it to me. I wasn’t expecting my liver surgeon to be sending a message since I knew he was out of the office. But that’s exactly who emailed me with a really amazing message.
I will still be going in for my appointment in about a week and a half, but it’s so good to have some information now. I can think about other things and not have moments of wondering what is going on. And honestly, these results are so much better than what I expected them to be!
I knew that 1 of the 3 tumors was already so small that they basically couldn’t be found, but it was nice to have confirmation that it still is not seen anymore. I had it in my head that maybe the last time they missed it for one reason or another. At my last scan, I knew that the medium tumor had shrunk a tiny bit, but it was still visible. Now it has disappeared like the small one did before.
But to me, the best news was about the biggest tumor. That was the one that made things so dangerous for me when it was discovered. The placement and size of it both were risky. And that has been shrinking quite a bit. The biggest change was the scan I had right before I was supposed to have surgery when it went from 10cm to 4cm. And it’s slowly been getting smaller since then. Each year it has pretty much gone down another 1cm. The milestone I knew it needed to be under was 3cm, and 1 year after we discovered the tumors it had gotten there. And it just keeps going down.
Now, my biggest tumor (which I always say was the size of a newborn’s head even if that’s overestimating it a bit), is not smaller than the smallest one was when we discovered it. It’s no longer dangerous for me to have this tumor in my body (even though that has technically been the case for a little while now). The tumor is 90% smaller than it was just 3 years ago! That’s a huge reduction.
There are still a few things I’m going to go over with my surgeon when I see him, plus I want to see pictures of the tumor now. But from his message to me, I know I have nothing to worry about. I do have some questions about what things might trigger the tumors to grow again and what monitoring I will need to do under those circumstances, but none of those things should be happening soon for me. So it’s more that I just want an idea of what I’ll need to do in the future.
I think I’ll officially believe this news when I see the images since it’s hard for me to believe that it’s really going this well for me. But I’m so grateful that my luck with my health has gotten better and that I’m able to relax about things a bit more now.
Posted onNovember 12, 2019|Comments Off on Another Liver MRI (or Not As Routine As Always)
As I mentioned last week, I did my blood work to prep for my liver MRI. Even though I’ve only been doing liver MRIs for about 3 years, I’ve done enough of them that I’m used to the process and it doesn’t necessarily scare me anymore. There are elements of it that I don’t look forward to and am a bit fearful of, but I know that I can get through it and that I’ll be fine. I’ve learned different things I can do to help when I’m having a tough moment during the MRI and I’ve managed to be ok every time.
I know the hospital tries to keep things on schedule, but I’m aware that emergencies and other issues can come up that will push back the time of my scan. I schedule my MRIs when I have nothing else I have to get to that day so if I’m stuck there for a while it will be ok. So when I went for my scan this time, I was prepared to sit for a while and had my Kindle fully charged and loaded up with a new library book.
But there was someone in the waiting room who didn’t seem to know the common rules for waiting room etiquette. They started playing their music through their phone speakers and not using headphones. This was already starting to irritate me and I was trying to not let it affect me. I didn’t want to ask them to turn off the music because I didn’t know if anyone else in the waiting room was bothered by it. And then things got a bit more irritating when they started to sing along with their music. I was getting really close to the limit of my patience when I was called back for my MRI. I was so glad to get out of there and almost looked forward to the MRI to escape the noise in the waiting room.
When I got into the MRI room, I got changed into a gown since you can’t wear your clothes in there. They used to allow you to wear your clothes if they didn’t have metal, but the rules changed. Maybe someone claimed they weren’t wearing any metal but they had a button or something. But I don’t mind changing into the gowns. It’s not a big deal plus it gives me a chance for a good photo.
When I got onto the MRI table, the nurses got everything ready for my IV. I gave them the same warnings I give to everyone and I’m glad that it didn’t go too bad. I had a little bit of a blackout when the IV went in, but I was back to my normal self almost instantaneously. They taped down the IV tubes to get ready to have the long tubing attached and I was joking with the nurses about how I can feel when they flush it with saline and how it tastes like permanent markers smell. I think they thought that was pretty funny.
The way I am positioned for the MRIs requires me to have my arms above my head. In the hand that is on the arm with the IV, I have the tubing for the IV around my fingers since they have to go toward the other side of the room. And in my hand on the other side, I have the panic button in case something happens when I’m inside. I’ve never used the panic button, but I appreciate it. Everything was set the way it needed to be and they moved the table into the machine to get the scans started.
But as soon as I got into the machine, I noticed two things. First, my nose started itching like crazy and I couldn’t do anything about it. I really wanted to scratch, but there was no way to bring my hands to my face. So I just had to suck it up and try to ignore it. And the other thing I noticed was the IV in my arm was hurting me. It’s a hard type of pain to explain, but in my head, it felt like the needle was moving and wasn’t in the right spot. I know it didn’t move, but it was pinching and irritating my arm. I didn’t want to press the panic button for either issue because I knew I could tolerate it and I didn’t want to delay the MRI.
The first part of the scan is without the contrast dye. You listen to the prompts from the MRI machine and it tells you when to hold your breath or when you can breathe normally. When you have to hold your breath, it’s usually between 15-25 seconds. And I have to say that 25 seconds feels like forever and I’m always trying to find a way to make the time go by faster. I usually try to count the seconds in my head or count each of the noises the machine makes. I can’t always make it for 25 seconds, but I’ve gotten better each time I have to do it.
Before they remotely injected the contrast dye, there was a moment that I almost had a panic attack. Maybe I don’t remember the past MRIs properly, but I don’t remember the other scans having a long break randomly in the middle. So when things stopped this time, I thought at first that maybe it was when they were injecting the dye. But I didn’t feel the dye going into my arm and the techs hadn’t warned me that it was coming. Because of how I’m positioned in the machine, I can tilt my head far enough back that I can see the ceiling of the room behind me. I don’t know why that calms me down, but it does. I had a moment of panic that maybe there was some sort of emergency and I was stuck in the machine alone, but I tried not to think about that. And finally, the machine started making noise again so I knew everything was fine.
After the dye was injected, they pulled me out of the machine so they could remove the IV since I don’t need it for the last few scans. And when they did that, I was finally able to scratch my nose. It has never felt better to be able to scratch an itch. And I knew at that point that I only had a few more scans left and I was almost done. When those scans were done, I was pulled out of the machine so I could get dressed and head home.
When I was leaving, the techs that were in the control room area complimented me on being able to hold my breath as long as I did and for being really still. I guess all the images came out really clear, but I don’t think any of my past ones were really bad. I just know of one image once that had to be redone because I shifted in the middle of it. But normally I think they are fine.
And when I was walking past the waiting room (because you have to pass it to leave), that one person in the waiting room still had their music going and they were singing along! I feel so bad for anyone in the waiting room that wasn’t ok with the noise, but I also feel so grateful that I didn’t have to deal with it for too long.
I won’t see my liver surgeon for about 2 weeks, so I won’t have an official update until then. But I have no reason to think that my tumors aren’t continuing to shrink and that I’ll get a good report and update.
Posted onNovember 5, 2019|Comments Off on MRI Prep Work (or Vampire Victim and Nerves)
I’ve got my liver MRI coming up this week. I haven’t had an MRI in a year, and I’m glad that I decided to do one this year. My liver surgeon gave me the option of waiting 2 years instead of 1 after my last appointment, but I think that would have been too long to wait. I’m still wondering what is going on with my tumors and I couldn’t imagine how I’d feel if I still had to wait another year before I found out.
I’m trying to not be nervous about the MRI, but I can’t help it. I still am scared that for some reason my tumors will be bigger. I know that it’s a really tiny chance that could happen, but I know that I’m also the person who gets the 1 in a million situations. I’m nervous about the MRI itself. I know I’ve done so many of these by now, but they still aren’t routine for me yet. I have been very lucky that my claustrophobic hasn’t been an issue while in the MRI machine. I think it helps that I can tilt my head back and see the room behind me. If I was in head first, I think that would be much worse. I’m nervous about getting the IV as well. I hate needles and that is always something I struggle with.
But I did get one of the needles out of the way last week. Before getting an MRI where they use contrast, you have to get bloodwork done. Because of the contrast they use, they have to make sure that your kidneys can filter it out of your body. I’ve never had kidney issues (although I have been told that I have a small cyst on one kidney, that’s never been discussed more with me other than telling me it’s there), so I know that I shouldn’t worry when I get my kidneys checked before my MRI. But I do worry because you never know when things will change. And of course, because it’s bloodwork, I have the needle to worry about.
I decided to do my pre-MRI bloodwork on Halloween this year. I happened to have that afternoon free so the timing was good. Plus, I was able to make the joke that my costume was a vampire victim. I know that the needles don’t leave a huge mark, but I do usually have a bruise when it’s done.
The last time I had bloodwork, there was a huge line and a long wait from when I checked in until I was seen. That time it was also worse because I was nauseous that day. This time, I was feeling good so I wasn’t dealing with nausea. And when I checked in, I barely had enough time to take a photo of my number before I was called to one of the stations.
Since it was only one thing they were checking with the blood, they only had to collect one vial. I warned the nurse like I warn anyone putting a needle in my skin about my issues with them. I let her know I might pass out or get very tense but that it was ok and she didn’t have to call anyone to take me to urgent care or the ER. I think the warning freaked her out a bit, but I know when I don’t warn the nurses that things are worse. Even though the nurse decided not to warn me about when she was going to stick me, I did ok. I did have the blacking out/tensing up moment that I’m used to, but it wasn’t as bad as it’s been before. And only a few minutes after I got to the hospital, I was already on my way out.
I’ve been trying to not think too much about the MRI this week, but it’s hard not to. For some reason, it seems like I get another thing from the hospital every day to prepare me. I have gotten appointment reminders, text alerts, and paperwork with what to expect during an MRI. I didn’t review that paperwork since I’ve done this before and I know I still have to fill out a form confirming I know all this information when I go in for the MRI. I won’t find out for a while about the tumors due to when I could get an appointment, so I know the time between the scan and my appointment will also be nerve-racking. But soon I’ll be past this and hopefully, everything will either be the same or better and I won’t have to worry about it again for at least another year.
Posted onSeptember 12, 2019|Comments Off on Another Quick Therapy Appointment (or Video Appointments Make Things Easy)
When I had my last therapy appointment, I was put on a new medication that would hopefully help me with recovering from my eating disorder. The plan was that I would try the medication for 6 weeks with increasing the dose each week and then I would have an appointment with my therapist to discuss how things were going and see if the dosage was correct.
But things didn’t turn out that way. I tried the medication for about a month before the side effects just became too much for me to handle. I really was hoping I could keep going, but it was affecting my life too much and the benefits weren’t worth it. I emailed my therapist to let her know I wanted to stop the medication and we worked out a plan for me to ease off of it. I’ve been lucky and the side effects I was experiencing went away very quickly. I haven’t been dealing with vertigo or numbness for a while now. And I don’t know if my period is going to be affected again this cycle, but at least it should be normal again soon.
Even though I stopped the medication already, I kept my appointment with my therapist. I figured that it would be good to keep it in case she wanted to talk to me more about stopping the medication and see if I was ok. And since it was a video appointment, it was easy to keep it and not have to worry about if the appointment wouldn’t be worth my time. I figured it would end up being a fast check-in and I was doing work at home while I was waiting for my therapist to get online.
And as expected, it was a quick check-in. She wanted to confirm that I was off the medication and that I was doing better. I think she was relieved that most of the side effects went away almost immediately. Unfortunately, the medication is very strong and a lot of people have reactions like I did. But it was worth trying it to see if it would help. We had no way to know how I would react until I tried, and now we do. And it did make me feel a bit better to find out that so many people have side effects. Even though I don’t feel like a failure for having them, I still felt better knowing that it was so common and not one of my medical weirdo moments.
Going over the medication was the main reason for the appointment, and we didn’t have much to discuss since I was off of it. She did want to check in with me to make sure that I’m doing ok emotionally and with everything else, and I was honest that I’ve been exhausted and dealing with a lot lately. But nothing that seems unmanageable or that I needed extra help with. It’s mainly something for me to be aware of and make sure that I take care of myself. I think my therapist was understanding with everything going on in my life and she was ok with me having a few extra things to deal with as long as I was handling them.
The last thing we went over was how I’m doing on Vyvanse. I know that she typically doesn’t prescribe it to patients and she’s following the protocol that my last therapist had. But I appreciate that she understands why I’m on it and wants to make sure that we don’t have to adjust anything. She did mention that we could increase my dosage, but I don’t want to do that right now. I feel like it’s a good amount for me and I do feel it helps. And I don’t want to increase until I feel like I do need more to get the help that I’m used to.
And that was pretty much it for my therapy check-in. We did set up my next appointment for 6 months from now and it will be another video appointment. Because my appointments are mainly medication check-ins, I don’t have to go as often as I used to. And every 6 months is pretty standard now for making sure I’m still doing ok and I don’t need anything to change. And of course, if something changes in my life and I need to go in sooner, I know I can make another appointment and go in person. But for now, I continue to be grateful for video appointments because they are so easy for me to do. And considering this appointment ended up only being about 5 minutes, it was nice to not have to drive 30 minutes there and back to do it.
Posted onSeptember 10, 2019|Comments Off on Some Random Medical Tests (or At Least Getting Blood Work Was Entertaining)
Something I didn’t post about when it happened was having some extra medical tests done recently. It wasn’t anything urgent or needed, but I like to try to get as much done at one time as possible. And I knew that I would have blood work done after my annual appointment. So I figured that would be the perfect time to ask about doing a few other medical tests that I had been curious about.
Even though I don’t want to have kids right now, I’m aware of the biological limits of my body. And I don’t know if people are more open about infertility or there is more infertility out there now (I honestly feel that it is a mix of both), but I have dozens of friends who are struggling to get pregnant. Some of them are due to age, but some are because they didn’t know that they were in pre-menopause early or they had another fertility issue going on. And many of those friends have been telling everyone they know to try to test your fertility just to see if there is an issue you can be aware of before you spend money on fertility treatments that might not work.
For me, fertility treatments might not be an option because of my liver tumors. And even though being pregnant is a higher risk for me, my tumors are small enough that it wouldn’t be life-threatening. So if I get pregnant in the future, that is fine. But since fertility treatments aren’t necessarily an option for me, I know being aware of my fertility and what the realities are of my body is a good thing. So when I was at my annual appointment, I asked about some of the tests that my friends said they wished they had done sooner. Some of them aren’t really a good option for me right now (I could be fine now and in a month things would be different so the results don’t matter), but there were 2 tests we could add to my blood work that would at least give me a baseline idea of where my fertility is right now.
Because I was doing some fertility testing with my blood work, I couldn’t just do my blood work that day like I normally do. You have to do the tests on the 3rd day of your period. Of course, my period was late and I had to wait even longer, but I finally was able to do the tests 2 weeks ago.
The blood draw lab was being remodeled so it was temporarily in a weird place in the hospital. And they had fewer stations than normal so things were getting backed up. And because I hate needles and I already have issues with nausea during my period, I was pretty miserable while I was waiting. The staff noticed how sick I was looking (nausea makes me break out in a sweat and I guess my coloring was super pale), so they started to worry about me. I tried to tell them that I was fine and sadly this was normal, but I don’t know if they believed me. They kept giving me weird looks as I was waiting.
Finally, it was my turn for blood and I was really worried about how it would go. I was feeling light-headed and weird and I didn’t know what was causing it. I have been doing much better with needles lately so I was trying to tell myself that it had nothing to do with the blood. But I still let the nurse doing the blood draw know about all my issues so I didn’t scare them if I passed out. And I mentioned that I was dealing with some hormonal pain and nausea so that wasn’t a shock if I mentioned it after the blood work.
I guess I didn’t think about how it would sound when I said I was dealing with nausea because they started to worry that I had the flu, measles, or some other disease. They started to ask me about what immunizations I’ve had and if I had been exposed to anyone sick recently. I kept saying that this is normal for me during my period and explained I had to do day 3 blood work. Finally, they relaxed a bit but I could tell they were still a bit suspicious about what was making me sick. And when the blood was done (I didn’t faint which made me happy), they asked me how I was feeling and I just said the same as before so they wouldn’t worry. The nausea was awful while I was there and I was terrified I could need to throw up during the blood draw. I’m so glad that didn’t end up happening.
It took a bit of time to get the blood work back (I was warned it isn’t as fast as the normal blood tests I had to do), but I did get my results back last week. And everything with me is in the normal range. There is one fertility test where I am on the lower end of normal, but that’s actually normal for my age. If I was trying to get pregnant now, I should be fine. And I know that this can change rapidly because of my age, but it still was good to know a baseline for now.
And the fact that things can change quickly for me is something my doctor brought up when she gave me the results. But she understood I was doing the tests more to see if anything was really abnormal and that it’s good that everything is in the normal range. I’m trying not to keep my age and fertility in my head too much because I can’t do anything to change my situation. And I’m not going to date or marry someone that I don’t feel right about just so I can have a biological kid. I have to just hope that I will meet someone and my tests will still all be in the normal range. But for now, I’m just glad that there isn’t anything I should be worried about.
Some More Virtual Therapy (or Trying Another Medication)
