I realize that I left you hanging with that last post. I guess that’s what happens when you write blog posts at 4 am. Short Story: I’m fine. Long story:…
I haven’t been sleeping very well because I’ve been a lot of pain. (I guess so much for telling the doctors that I’d been in much less pain.) Anyhow, I woke up because I really couldn’t sleep, and I was in a really bad mood. I couldn’t decide if I was just hungry or actually in pain, so I tried eating some stuff which made things worse. In debating over whether or not to go to the ER, things got WAY worse. So I wrote a note to the family, put it on my bedroom door, and grabbed some stuff & Molly and headed to the ER. Fortunately, I’d done my research before and figured out which ER made the most sense for me. (There are three ERs that are basically the same distance from my house.) That was about 3:15 am.
The whole trip was kind of surreal. I was SO exhausted that I wasn’t thinking clearly most of the time, but I was feeling bad enough to know that I couldn’t leave. I spent at least two hours in the waiting room with a young couple and their 14 month old daughter. She was really cute, and we managed to lean on each other a little bit emotionally, so that was nice. Both the dad and I had a lot of abdominal pain but were trying to be really saintly about it. (Not sure how much we succeeded on that point.) So I was grateful for the company, and Molly made a new friend.
I would have to say that it was the one time in my life that I was jealous of someone with appendicitis and was heading to emergency surgery. It sounds bad, but I saw the dad in the hallway right when he was getting diagnosed (and then word travels around the ER pretty easily since there aren’t exactly real walls.) I felt bad for him and for what they were going through and was praying for them and everything. I was just jealous of the fact that his middle-of-the-night ER trip was totally justified, that he had an answer, and that he was given a solution. Unfortunately, I had none of those.
They were able to confirm that I do not have appendicitis nor an infection nor anything else life threatening. It wasn’t even immediately obvious if it justified an ER visit anyways. It could have been an entire waste of $700 and a whole bunch of “sleep”. But talking it over with Alana, I realized that there were some serious red flags. Like I measured my heartrate with my phone app and it was 136 beats/minute. (My resting heart rate is generally under 70 bpm.) I was so scared and so tense because of the pain that I was having a hard time breathing. So perhaps even if the ER doctor was confused why I went in, I think it’s a good thing that I got things checked out and that I got a few things ruled out right away. Otherwise, this girl who has to take care of herself all the time would have maxed out capacity-wise.
So yeah, I didn’t get back to my house until 9 am. And I taught two classes and tutored for an hour all after that.
Just another day in the life,
I just got the patient itinerary for my first week at the Clinic of St. Jude. I’m really nervous now. Actually, I’m freaking out. My coordinating physician down there already has me booked for the first five days with lots of testing and consultation. (Well, I knew that was going to happen but now it’s in solid print.) I can’t believe that I’m going down there all by myself and am going to have to deal with this 24/7 for days on end. I can’t believe that I’m going to be in a new place with new doctors doing all this stuff. I feel overwhelmed already.
I’m trying to remember that I have friends there that will support me. Alana lives there, and so does Bethany and her husband. Other friends live close by. One of my best friends from elementary school(!) is doing her medical school rotation in town just for those three weeks!! And I know my coordinating physician personally.
I can do things like tell them that fasting from midnight to 4:00pm two days in a row is just not going to happen. I can make people actually read my records and not just endlessly rerun tests that have already been done (just for the sake of doing them again.) I can (and I will) decline certain treatment “options”.
The thing is though that all of that takes a lot of energy: physical, emotional, and mental. I’m not even there yet, and I’m already overwhelmed.
It’s so ironic that I have to be this involved in the management of something that’s out of my control.
Please pray. A lot.
I’ve been dealing with a swollen breast for the past 15 months. It’s been incredibly annoying. And it gets in the way of everything. When you have people at the grocery store pointing out that your clothing hangs weird, you know that things have gone too far.
The problem is I’ve seen a lot of health professionals about this. In between many, many episodes of the XXXXL gown, Dr. Mark and I tried to sort through what the condition could be and how to fix it. When I saw him last week, we lamented how I had already tried (1) steroids, (2) non-steroid anti-inflammatory drugs (NSAIDs), (3) topical NSAIDs, and (4) antibiotics. He didn’t have anything left to offer. And the problem is that no one besides him had ever taken me seriously.
First, there was Dr. Voluble who was absolutely no help whatsoever. (I still wished I had walked out on him.) Then I saw a bunch of other specialists, all to no avail. They told me that I was young and skinny and female. And that things fluctuated. Of course, I also got a lot of lectures about not drinking caffeine, but I don’t anyways because (1) I never have and (2) that’s bad for my sleep architecture. And I also got lectures about wearing sports bras, which seemed to only magnify the problem & are terribly impractical for someone who’s trying to be a professional. Mostly, I’d gotten thrown out of a lot of practices.
Of course, Drs. Leo & Samuel were sympathetic and made various suggestions, but it is WAY outside their scope of practice. Dr. Harold and Mr. Eric also made observations and kept track of how things were progressing. But all my doctor allies keep reiterating how much this needed to be brought under control, especially since I was having to buy a new wardrobe and was really self-conscious about going out. Plus, as Joseph pointed out, it was anything but normal, so it needed to be addressed. That’s a great consensus but what’s a girl to do?
So today, I finally saw a specialist in my new area. After 2.5 hours in her office (!!), she said that yes, there definitely is a lot of swelling on that one side. Unfortunately, given everything that I had already tried with Dr. Mark and given the fact that the imaging came out totally normal, she had nothing to offer me.
Finally, someone who deals with this didn’t just kick me out in the first five minutes. But still. She didn’t have any solutions for me. She just said to keep an eye on it and to come back in three months if it wasn’t better. She said that sometimes people with fibromyalgia get this kind of thing and that it takes forever to clear up. (At least that’s what she’s seen from her patients.)
I’m not sure what Dr. Mark is going to think. I kind of wish I was back in that area already, so we can rehash everything. I also just realized that the medication that I had been taking recently and had seemingly helped a lot is probably also responsible for the massive nausea that I’ve been feeling. So, it’s all back in one massive circle. And I still have to buy asymmetrical winter clothes.
So I’m vindicated, yet so very, very frustrated.
This month, Leslie at Getting Closer to Myself asks, What do you do when you feel like giving up?? Funny you should ask Leslie. That’s come up a lot lately.
Like Leslie, I’ve just moved to a new state and left graduate school to start a new chapter in my life. It’s been a really hard transition. Aaron asked me earlier this week how my life is going, and I could only think of one response: hard. I’m pretty sure that someone else in the chapel scoffed when I said that, but I don’t care. It’s true. It hasn’t been easy. It’s been hard.
So Leslie, I feel like giving up a lot more than I did before I got sick. In fact, I prided myself on never giving up before I got sick. Now I’m much, much more aware of my own limitations and my own mortality. Here are a few things that have been helpful to me:
1) Being honest with myself. I’ve found that it’s been helpful to own up that things are hard or that I feel like giving up. They say that acceptance is the first step to recovery, and I think in a real sense, it’s a prerequisite to all the other things. Be careful that you don’t fall into the trap of self-pity or making excuses. You’re being honest, not giving yourself a get-out-of-jail-free card.
2) Lean on friends. Seriously, that’s what friends are for. When God told Adam in the Garden of Eden that it’s not good for man to be alone, He was on to something. Reach out to people who can sympathize. Reach out to other people who can empathize. Allow people to be with you in your hardship. Ask your doctors for support, especially if they know they can’t really help you.
3) Cut yourself some slack. Ask for help with the little things: laundry, meals, returning books to library, checking the mail, taking out the trash, delivering gifts to people. Allow people to pray for you. Tell God how difficult it is for you and how you hate how things are.
4) Make me-time even if it means not doing the little things or taking days off work or skipping chapel. (That’s what #3 helps with.) Sometimes this means sleeping. Or watching lots of TV. Or picking up a new hobby. I’ve made quilts. I’ve read lots and lots of Christian fiction and Jane Austen fan fiction. Sometimes I even go on virtual shopping trips. It doesn’t really matter what it is. Just take some time to take care of yourself, to take the phone off the hook, to check out of all the problems of life, and just tune in to yourself and what you really need. Most of the time I feel like giving up, it’s because my needs aren’t being addressed by other people. Well, step #1 means that you need to take time to address them or even listen to them. It’s hard to do that when you’re tutoring your baby sister in calculus or unloading the dishwasher or whatever. (And then, of course, step #0 is acceptance.)
5) Think about your life’s purpose. I decided a long time ago that I wanted every day of my life to count before God, and I wanted to bring a smile to someone’s face almost every day. (Some days I never get out of bed and therefore never encounter anyone. I cut myself some slack.) Some days it’s something big like volunteering in a local community or helping someone with their homework. Other times, it’s just smiling to the person in the car next to me or saying “thank you” to the clerk at the post office or making a friend smile over the phone. (I think I’ve become adept at hearing someone smile.)
I’ve found that hardship has little to no correlation with purpose. When things get hard or seem impossible, there’s always still a reason to press forward. I know that it matters to someone every single day that I’m here. And that makes it all worth it.
A few things that I’ve also learned not to do:
1) People who are worse off than you: This is incredibly subjective and isn’t that helpful. It’s true that there are people who are “worse off” than you. For example, I ran into someone after prayers yesterday who was asking for a sleeping bag because he was sleeping outside in near freezing temperatures. Those are definitely shoes that I don’t want to fill. But, you know, I think hardship isn’t a one-dimensional scale. Just because our hardships are different doesn’t mean that they aren’t exactly that: hard. I’ve learned not to discount my own reality.
2) Spending time figuring out what you did wrong or how you deserved this reality: This also isn’t helpful. It becomes a trap and a vicious cycle. Not everything in life is this straightforward. Plus God doesn’t work this way. His ways are mysterious and are not always straightforward and simple. We shouldn’t presume to understand what He’s doing.
3) Letting other people tell you that you’re sick (or your life is difficult) because of _____: Again, not helpful. When I was struggling very much with depression, one group of people told me that I was sick because I didn’t pray enough and another group told me that it was because I wasn’t making a sufficient effort to be well. It took me a long time and the insight of a very astute friend to help me realize that those comments weren’t helpful. Even if those comments were true (which is debatable), they don’t help someone get out of a funk. Now when people tell me that I should pray more, I ask them to pray that God would give me the strength and desire to do that. I know that God only answers prayers that match His heart. I’ve learned to say “no” to some people. The people who tell me that if only I exercised more I would stronger? I tell them that that’s how I got to be as sick as I am now. Sometimes I ask people to help me out with their own suggestions. The former classmate who wanted me to sue the ravenous lion? I asked him to figure out what steps I would need to take to make that happen because, while that makes sense (maybe), I didn’t have the energy to do it AND be in graduate school all at the same time. Then he understood. And sometimes I just smile and nod. Like the guy who pulled me aside after church to tell me that I needed to try protein shakes because I was unhealthily skinny. I used my former professor’s advice. Just smile and nod and say that you’ll think about it, you’ll consider their suggestion. Then walk away and forget about it. You just spent the past five seconds thinking about it.
These are just some notes on what has worked for me. I would never presume that these would work for everybody. But I hope they might be helpful or encouraging to someone.
All the best,
you arrive at the grocery store hungry and you leave only having purchased less than $10 of items. And these are the items:
- can of peanuts
- bag of candy corn
- can of sports drink powder
- 2 cans of tuna
Seriously? This eternal nausea thing is getting old. Plus I’m hungry. And have no energy. I wonder why.
So, my left ear has been killing me. For. No. Good. Reason. And I’ve been working on a new quilt but apparently I can’t add any more. (When your queen size quilt is 35% smaller than it should be, we have issues.) And so life has been exciting.
But this ear thing? Seriously. It’s driving me crazy.
Half the time I think it’s a jaw thing. Because my 13-year molars are still emerging on the left side, and the gum is swollen. Plus if I don’t open my mouth for a while, it hurts more.
But the other half of the time it feels like an ear thing. Like WAY deep inside the left ear. And it hurts to hear. And to think. And to sleep.
The ENT I saw removed a bunch of ear wax from that ear, which relieved a bunch of the pressure, but it still hurts a lot.
I’m secretly convinced that there’s something wrong with the left side of my body. Okay, it’s not really a secret. And it doesn’t take all that much convincing. It’s more of an observation.
Anyhow, I remember having bad TMJ pain when I started graduate school two years ago. But somehow this feels different. Maybe I need to go find the notes from the doctor that I saw back then.
So much to do. Somewhat overwhelmed. And out of spoons. Do you think reading The Ear Book would just make this all better? Because I used to love that book. And it would be so much easier.
Just another day in the life,
Just a quick update to give you a glimpse of my life and to ask for some prayers.
I’m settling in to life at my parents’ house. I never imagined that I would stay here, but I’m grateful to just be in one place for more than two weeks at a time. The last few months have been kind of crazy, including three week-long “visits” to friends’ houses.
I’m having a hard time transferring my medical care down here. Part of the issue is that the medical landscape here is just different and because it’s so much bigger, it’s more confusing. But another part of the problem is that I’m having a hard time explaining to someone why I’m sick and why it’s important that I need help. I’ve spent so much time and effort accepting my illness for what it is and learning to live life in spite of it that it’s hard to convince someone that I do actually need help and that there is something majorly wrong going on.
I hurt my left hip somehow in the move to my parents’ place. I’ve been in and out of chiropractic appointments, but I’m not convinced that anything besides the first visit really helped. It’s really bothering me a lot though and keeping me up at night. (It’s super painful and also kind of wobbly.)
I’ve been having pretty intense inner ear pain in my left ear. It’s been going along with headaches and toothaches, which are immensely hard. I tend to want to sleep on the left side of my face, which is tricky since I can’t sleep on my left hip. All in all, falling asleep is hard and when I wake up, my body feels all twisted. I’ve already been screened for an ear infection and for other obvious stuff. We’re not really sure what’s wrong, but now that I’m starting to hear ringing (only) in that ear, I think I’m going to have to go down the investigative route.
Good news is that the breast pain is bothering me a lot less. Part of it might have to do with the fact that I’ve been home a lot and just lounging around in sleepwear. But a former chiropractor of mine is graciously allowing me to undergo cold laser therapy at her office, and I think it’s actually helping with the pain & inflammation. I’m skeptical, but I’m fitting into more clothes now, so something is actually changing.
I’ve got some freelance work coming up, but honestly finding a job has kind of taken a second place to getting medical stuff sorted out. It would be nice to have some pseudostable though. Plus, when I’m not resting or unpacking or dealing with health stuff, I’ve had to do the whole run around of getting a new driver’s license and changing my car insurance and hassling the credit card company, etc.
Prayer requests: that I would get adjusted to living in this new place, that the medical stuff would get under control & that I would have the strength/the help/the support I need to get what I so desperately need, that things would stabilize so that I can focus on more meaningful (to me) stuff like going to church, and that somehow I’d continue to have the energy to live with my family.
I’m back in my apartment from visiting friends, and it seems like my to-do list never ends. I’m applying for jobs. I’m cleaning the apartment/unpacking (shhh, only a little). I’m catching up on emails. I’m planning my move back to my hometown. I’m trying to catch up on sleep. I’m going to doctor’s appointments. (Four appointments in three days?? I need to stop doing that to myself!)
Yesterday, I was trying to eat dinner. (I still have to do that too.) But then one of my friends called. So we talked for about an hour. While we were talking on noticed this huge stain on our living room ceiling. When Gretchen came home, I showed her and discovered that the stain is about twice as big as I thought. And there’s another stain in her bedroom. We’ve actually found a stain in her bedroom before.
Since I spend way more time staring at the ceiling (at least in comparison to other sane people), I suppose it was bound to happen that I would notice the ceiling leaks. Gretchen never has time to stare at the ceiling. Thank you chronic illness.
The maintenance guy told me that unfortunately, our building roof is shot. All the wood is rotted up there. They’ve been patching it, and he’ll make sure that it’s patched above our unit. But other than that, the owners can’t be convinced to replace our roof until next year!
Add that to the list of reasons why staying in this “paradise” is no longer an option. I can’t wait to see the look on Gretchen’s face when she realizes that the sky is falling. Literally. Ok, maybe I’m being dramatic. A little. Or maybe not.
A short update because some of you expressed concern after my last post. (Thank you.)
So, I don’t want to put all my eggs in one basket or count my chickens before they hatch, but here are a few things I’m at peace about putting out in public:
- I (temporarily) am back at my apartment. After breaking down in Mr. Eric‘s office, I concluded that not being in the house was more pertinent than I had thought. I’m just back for the weekend and then will figure things out from there.
- I made some phone calls and started praying about moving back to my hometown.
- I made definite plans to visit a good friend and her husband for a week in early July. In a totally different town.
- I talked to Grace about what had happened and about the things that stressed me out about the community. She said, Us too. Her week has also been exceptionally stressful… but she said that the silver lining is that I may be able to move into her house immediately. And she said that it would help her a lot to have me closer to her.
- A couple employers called me to discuss potential jobs, here, there, and everywhere (aka remote employment).
- I have appointments/conversations scheduled with Drs. Leo & Samuel this coming week where we intend to discuss plan of care for the next six months and what to do if I stay or go.
A lot is up in the air. I am kind of confused as to what God’s doing and preparing in my life. But I’m trying to remain open to what He has in store. And keep praying.
Someone shared with me this week that FAITH stands for Fantastic Adventures In Trusting Him. I’m trying to remember that. It’s better than swearing. Or pacing. Or wringing my hands. Plus, I’ve finally found some peace to sleep and heal.
Please pray. Pray for clarity. Pray for wisdom. Pray that the enemy would be bound. Pray that the right housing and employment opportunity would open up. And pray for conversations with the doctors, with Aaron and Timothy & Grace, and with friends. (I’m not sure what the secular equivalent is to praying, but as long as it doesn’t involve black magic, I appreciate all good thoughts and support and well wishes and whatever else seems appropriate.)
Growing in faith through faith in Christ,