Calling all chronic patients, spoonies, caregivers, medical professionals, and human beings!!! I’m hosting this month’s Patients for Moment carnival, and I want YOU to participate!!!
Each month, Patients for Moments hosts a blog carnival where we ask each participant to write a short blog post (or even a comment to someone else’s blog post), contributing their thoughts on a given topic. The more thoughts (and perspectives) the better, so come on in and join the party. Loyal participants, novice writer, or long-time silent reader: you are welcome.
In the spirit of reflection and gearing up for the holidays, this month’s topic is your holiday message. What is it that you would tell your Aunt Sally when she says, I really wish there was something I could do to make your life better? Is there something you wish you could say to that friend who says Call me if you need anything?
If you didn’t have to worry about hurting anyone’s feelings or being prim and proper, what is that you would ask for or want people to know? Do you have a message of encouragement for our community? A request for support or encouragement or even basic understanding?
To participate, please email me at abigail.cashelle (at) gmail (dot) com with the title and blog url of your post by December 12. Please include PFAM in your subject line. OR if you don’t have a blog, feel free to comment directly on this post.
The final edition will be showcased here on December 15.
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.
I think I’m really burned out. I’ve noticed that I’ve been extremely mopey lately. And I’ve started swearing a lot. Which is extremely unusual. Usually I’m allergic to swearing.
Anyhow, I’ve determined that while living with Aaron and Timothy & Grace’s friends is quite an opportunity, I think it’s stressing me out more than it’s helping. I don’t really know the people that I live with. The community is also incredibly unpredictable. Most of the time I’m one of the only people home, but sometimes (and with almost no notice) someone(s) will just show up and be there to stay. Last night, after a terrible, terrible day, I came home to just rest and chill and try to forget everything that happened. But, lo and behold, a bunch of people showed up at the house for dinner. Which I’m all about dinner and fellowship and community. But really? When I wandered out (in my pajamas) to figure out why there was so much noise, I didn’t expect 20 people in my living room and a toddler running around the whole house. As the night wore on, it just got to be too much.
I love the ministry. I love what they’re doing here. But it’s times like these that I really miss Timothy & Grace (because they don’t come to these impromptu shin-digs. They retreat to the serenity of their house.)
I’ve come to the conclusion that the whole point of being here is to rest and recover. It’s hard to heal and think if I’m always stressed out and can’t hear the sound of my own voice.
I think, for my own sanity and for the sanity of those around me, I’m moving on. I don’t have a job yet. I don’t have a place to live. We still have no idea what is wrong with this most recent (and annoying) source of inflammation. But part of figuring that out will have to include transitioning out of this community, at least living here. I think part of my heart will always be here.
It was an interesting experiment. I’m really glad I did it. I’ll be here for a little while longer (and probably longer than I’ve been here already.) But I’m not going to linger here forever trying to make this work. Because all of this directly counters why I’m here in the first place. And, since I’m doing this for me, taking care of me entails doing something else.
I talked to Aaron about it already. He encouraged me to pray about it all. He also promised to pray for me. But he urged me to start looking into options to move back to where I was before I started graduate school. And we’ll touch base in a week to reassess.
Praying for clarity and for all the pieces to fall into place. Praying for strength for the next few weeks. Praying about all the conversations that will occur in the next week or so.
Sometimes being a spoonie really is annoying. Don’t know what the Spoon Theory is? Go ahead. Follow the link. Read the story. Come back. We spoonies will wait. (We’re good at that.)
you did follow the link, right?
Case in point: these are some recent problems that have come up in my life:
— no running water in my apartment in the middle of 2-3 days of a given week for the past two months
— approval to take a reduced course load is approved but full-time status does not show in the system which means that I now owe money for this term’s tuition and my paycheck won’t come at the end of the month and I lose my health insurance… (aka bad things happen)
— my car has decided that drifting to the right is the normal thing to do, especially when going fast
— my closet has thrown a fit because I haven’t put my clean clothes away consistently for the past few months and now it refuses to have enough hangers for everything
— one pharmacy only has bank hours and only stocks “common” meds
— elite pharmacy doesn’t always keep things in stock that are uncommon and expensive
— someone writes me and says, now, I know you signed up to do x but we had some people drop out, so please do an additional x
— compile (and acquire) book lists for the exams
— listen to my roommate talk about her life (aka be a good roommate)
— go to the class I’m allegedly grading (but currently not being paid for)
If we use a low estimate and say that every one of those problems demands a 2 spoon solution (1 spoon problems like answering the front door don’t qualify for the list above), we now have a demand of 20 spoons. Let’s say that I have 20 spoons per day but 10 of them are reserved for every day necessary activities (like answering the front door or going to the bathroom). That gives me 70 flexible spoons a week. And, I don’t always have the energy to use a spoon. Or to know that I have them. It’s not like someone gives me 70 spoons at the beginning of the week and says use wisely. You pick them up here and there; and you lose them here and there. Think video game of spoons.
To go to prayers with Aaron, Timothy, and Grace? 5 spoons
To email my doctors and say in no uncertain terms that no, I’m not open to this treatment plan; what about these options? 2 spoons
To think up of a meal, prepare it, and eat it? 5 spoons
To take a shower? 2 spoons
To work on my dissertation proposal? at least 3 spoons simultaneously
To actually get out of my apartment and go to class? 2 spoons for putting on street clothes, 2 spoons for getting to campus, and 1 spoon for remembering where I’m supposed to go after that = 5 spoons
Herein lies the problem. There are simply not enough spoons in a week to do everything I absolutely need to do in order to survive. Which means… there aren’t spoons left to solve problems with. Except some of these problems are major problems. Like I can’t get any reading done if I don’t know what books I’m reading. Or my roommate will never be there to support me if I become the world’s flakiest roommate. Or I might be on the street in a few weeks if I don’t get my enrollment status straightened out.
Folks: this is why those who have encountered me have heard rants about the lack of running water. And how I had to call all my friends with showers to find one I could borrow, put all my shower stuff in my car, and drive to someone’s house to shower so that I could go to prayers.
I’m sorry but the following responses demonstrate that you have no idea what my life is like: well, you should have showered when the water was on (aka in the early morning): ummm, no, that requires an addition 3-5 spoons; you had advance notice so the fact that you didn’t take a shower the day before shows your lack of responsibility: ummm, no, it shows that I know how to conserve spoons; couldn’t you just have waited until the water came back on? ummm, no, I would have missed my window of opportunity when I actually had the energy to use multiple spoons.
The school stuff? Umm, the whole point of taking a lighter course load is so that I didn’t have to use as many spoons.
The pharmacy? Seriously??? Especially since bank pharmacy only fills prescriptions you bring in in-person; refills can be called ahead, but otherwise you have to wait 30 minutes in the crowded basement to talk to a pharmacist who will answer any questions you have with “read the info sheet”. And they’re closed on evenings and weekends.
The other pharmacy? It’s great and I love the pharmacist but it’s annoying to have to go to two pharmacies and everything here is so much more expensive. I can’t afford to fill all my prescriptions here. (I could but then I wouldn’t have money to drive to campus or something else. Money is kind of like spoons as well.) And if they have to order stuff and I have to come back again and again, those spoons add up quickly.
Oh, and the medical stuff? The newest antibiotic regimen? It consumes spoons like there’s no tomorrow.
Please forgive me if I’ve been slow to write email responses or if I’ve seemed bitter at the world. I’m dealing with a major spoon deficit that does not appear to be going away and is seriously unfair. Please forgive me for not being kind and understanding or for being the world’s most unreliable friend/sister/classmate/employee. This is a crisis. My priorities are in crisis mode. Pray for things to settle down, for peace and rest to enter in, and for more spoons to arrive.
I’m truly thankful for all that God has done in my life, particularly this year. But sometimes, I can’t help it. I wish it would all just go away.
Having a chronic illness is hard, folks. You can’t take a vacation from it. You can’t say, This is beyond the scope of my practice (or interest or time). You can’t even protest and throw things at the person or thing responsible for it all starting because (at least for me), there isn’t really a solid cause or moment it all started.
When people ask me what I want for the holidays (or my birthday or graduation or any occasion for that matter), slaying of the monster of illness still tops my list. Here’s the beginning of my wish list for the year:
0. feel soooooo much better permanently
1. get answers as to the root cause of what I have and make headway on a treatment plan
2. to be surrounded by good friends and amazing support through everything, the good and the bad