This post is part of a Patients For A Moment blog carnival that Duncan is hosting. More specifically, it’s part of Duncan’s “ILLiteracy Project” carnival.
Category Archives: rant
During the two years that I was studying for my masters degree, I would meet two of my closest friends every Sunday morning at a local coffee shop. We’d spend an hour chatting, venting, gossiping, and catching up on our lives (or lack thereof) over bagels and coffee, before the conversations would inevitably tangent off onto random topics. I miss those chats – and the insights into my friends I’d gain through them. So I thought I’d try to restart something along those lines on my blog. A chance to hear more from my readers… at first, I was trying to decide if I wanted something consistent: quotes/sayings, song lyrics, random current or pop culture events…. But I think it will be more fun, more free to mix it up. Just whatever I’m dwelling on at the moment. Hope you all have as much fun with it as I do.
No matter what you’re accustomed to during a “normal” winter, Winter has been pretty brutal across a large chunk of the USA this year. I live in the upper Midwest where we have had some really nasty wind chills and such. We expect cold winters, but not like this. It’s been miserable, and the extreme cold plus the snow have had my body in hysterics. The occasional warm spells didn’t really even help, because the sudden jumps from way-below-zero highs to highs in the teens or 20s (F) back to way-below-zero highs again confused my body even more. Meanwhile, I’m trying to walk or drive on the ice rinks we are currently calling streets. It’s been the kind of winter that starts to make me feel like maybe this year will be the year when Spring just forgets to show up…
There’s a bit of poetry that popped into my head during one of our especially cold spells, and has been providing a bit of solace ever since. It’s part of a much longer poem, and is taken rather out of context, but part of the appeal that art and poetry hold for me is that I don’t necessarily have to interpret them the way they were intended to be interpreted.
For winter’s rains and ruins are over,
And all the seasons of snows, and sins;
The days dividing lover and lover,
The light that loses, the night that wins;
And time remembered is grief forgotten,
And frosts are slain and flowers begotten,
And in green underwood and cover
Blossom by blossom the spring begins.
-Algernon Charles Swinburne, Atalanta in Calydon
I’ve been reciting these lines in my head as a reminder that eventually Spring will return, even if it doesn’t feel that way right now. I may not be able to see it, but daylight hours should be getting slowly longer. I try to remind myself that Spring starts to develop deep in the Earth and trees long before the buds start to show on the branches. Besides, the line “frosts are slain” has a splendid sort of vindictiveness to it that fills me with a rather unkind glee…
The thing about this concept of not always seeing the early signs of something is that it applies to more than just the Spring. It also applies to my flares. Just like I usually get a warning of their impending doom, they have usually started to gently ebb away before I realize that there is some relief coming my way. Of course, since I don’t see the signs, I’m busy cursing the flare in the meantime. The point is, really, that I’m so miserable, be it from a flare or the winter cold, that I can’t, or won’t, see the signs that relief is coming. Albeit slowly.
So while my body continues to flare in anger at the weather, and Winter marches interminably on, I try to put some faith and hope in the invisible signs of better days.
What inspires you to hope for better days?
*Disclaimer: As I stated above, I have taken these lines out of their greater context and applied the meaning as I am choosing to interpret it. To the people who never feel satisfied until they have mocked someone else: should you feel an absolutely redundant but inescapable need to point this out to me, please send me an email rather than leaving a comment. Preferably with a subject line with something along the lines of “mocking your interpretation of the poetry” or something so I know what I’m walking into when I open it. Thanks 😉
Chronic diseases affect just about every aspect of a person’s life, but which aspects are most painfully affected varies from person to person. Many people struggle with maintaining friendships and feeling like an active, contributing member of society. I have been very lucky in those two areas lately, but I find that the dating and romantic relationships prove to be the hardest part for me to deal with. Dating can be a pretty difficult process to begin with sometimes, but chronic illness just adds another level of messiness.
With both full-time work and part-time school, the amount of time that I can potentially spend with someone is already limited. This is then compounded by the fact that trying to manage my schedule with my illnesses means that by the weekend I really just want to collapse into bed and stay there. I’m exhausted and pretty much useless company by Friday night. … and that’s just on the regular days. The problem is, I can never predict which days will be regular days and which days will be “OMG I’m so exhausted I can’t see straight” or “OMG I’m in so much pain that the idea of even trying to get out of bed is excruciating.” So I could potentially plan a date that fits into my ridiculous schedule…. and then wake up that day and say “yeah…no.” Which really sucks, and makes it hard to convince a guy that I’m actually interested. This, of course, applies througout a relationship. I can never truly guarantee that I’ll feel up to doing something. Then there’s the fact that as a vegetarian with gastroparesis, dinner dates are hard. Yes, I can usually find something that’s vegetarian, but I can usually only finish maybe 1/3 of it. It’s uncomfortable sitting a table and picking at my food. It seems like a minor thing, but it makes my dinner dates all the more awkward.
Of course, those are only the initial issues. The major elephant hiding under the rug, of course, is the reality of my chronic illnesses themselves. I never really know how or when to let the elephant out of hiding. Trying to hide that something is going on with me is about as easy as trying to hide an elephant under a rug. The big lump under the rug shows in the aforementioned issues with scheduling a date in the first place, it shows when I can barely manage to eat a child-portion meal, it shows when I wince as I try to stand up after sitting at the dinner table for so long, and it definitely shows in my limitations in terms of activities for dates. Hikes? Ummmmm yeah. Not so much. The end result is that people either think I’m not interested, or see the bump under the rug, but can’t figure out what it is. But most of the time they don’t seem to care whether it’s an elephant or maybe a hippo or a rhinoceros? The reality is, most of the guys feel uncomfortable and don’t really want to get into any kind of relationship with someone with this much baggage. Now, granted, a friend reminded me awhile back that most everyone has baggage of some kind. My friend, in her infinite wisdom, said that the trick is finding someone who can accept your baggage and whose baggage you can accept. Well, getting someone to accept it seems to be the issue.
I think part of the problem is that I never know when to bring it up. I don’t like to bring it up too early because then I feel like it’s casting a shadow over me and who I really am. I want to at least stand a chance of a guy being interested in ME before I mention my illnesses. On the flip side, if I wait too long I’ve had guys say that they feel cheated and that I should have ‘fessed up earlier. It’s hard to judge the right moment when every guy is obviously different. More than one guy has been put off by my timing, and one even said that he had thought I just wasn’t that into it, but this reality was “way worse.” I once had a guy catch sight of my medical ID bracelet in the middle of asking me out. He faked a page and left without even finishing his sentence. Which just begs the question “Is there truly even a good time?” It’s nice to weed out the guys who don’t want to deal with the realities of my life early, but sometimes I feel like maybe if they got to know me a little first they might be interested in at least giving it a try.
Watching my friends move forward with their lives is hard too. One of my best friends got marrried last summer, another one around Christmas, and I’m pretty my sister is headed in that direction in the very near future. Sometimes it’s hard to deal with the dual-ing feelings of joy for their happiness and my own loneliness. Dating isn’t easy even without chronic illnesses, and a lot of my friend are still single right now. This sort of helps, of course. Still, certain times are hard. Valentine’s Day. (Last year my sister bought me a bag of chocolate. Which she later announced – in front of a group of people, mind you – was “pity chocolate” that she bought me because she “felt bad that I was home alone when she was out on a date.” This was supposedly a joke. I don’t think I’ll ever find that kind of cruelty funny, and it certainly didn’t make it any easier.) Summer wedding season is rough too. I try to remind myself that days like Valentine’s Day don’t actually matter in the grand scheme of things. I know this in a logical frame of mind, but sometimes my emotions overrule the logic. This of course leads back to my acceptance theme for this year. Trying to just accept that it’s probably going to be harder to find an accepting guy. Trying to accept that this is only partially in my control. Most of all, I’m struggling with trying to accept that it’s ok for me to feel both overjoyed at someone’s luck and happiness AND miserable about my own love life (cough. lack there-of).
Whenever I post something about dating, I invariably get comments or emails from the people who have been lucky in this arena. Generally, when one or both members of a happy couple start to lecture, grating feelings of resentment and annoyance tend to be induced. However, there is some solace in knowing that there are people out there who can be accepting of illnesses like this. Honestly, I get the most reassurance from people who started dating someone after they already had their illnesses. I think this is because, at least to me, asking someone to accept me part and parcel with my illnesses is different from asking someone who is already in a committed relationship with me to accept that I’m being diagnosed with a new illness. I’m sure that that situation has its challenges too, though, and I’d love to hear from people about what they did to get through either of these situations. Have you found any good ways of getting around these issues? Or in explaining your illnesses? How do you judge when the right time to “‘fess up” is? I know that some of this is just a matter of finding the “right guy,” but if anyone has any tips or tricks I’d be grateful…
This post is part of a Patients For A Moment blog carnival that Leslie is hosting. This month’s PFAM blog carnival topic is “What do you do when you can’t keep up?”
Keeping my head above water? Almost impossible right now, but it’s gotten a little better. In order to explain why, I need to do a quick (and very, very long overdue) life update: I have been working full time for about a year and a half now. In September, I started a part-time MBA as well, in an attempt to figure out a new career direction. I’m taking 8 credits at a time. This means that in addition to 8 hours a day at work, I have class Mondays and Thursdays from 6.20-8.20 and on Saturdays from 8-11.30. Oh and I have homework. Lots and lots of homework.
I spiraled into a flare right before classes started. I think this was mainly due to too many weeks of the constant chaos involved in summer weddings, weekend trips to visit friends in other towns, and hosting family who came to visit us. Well, all that mixed with the ridiculously hot summer weather we had this year. Then my parents were out of town the first couple weeks of school which meant that I was left to do a lot more of the driving, plus all the cooking, cleaning, and laundry chores that my mom and I usually split. It was nuts. The first few weeks of school were miserable. My counts were really off, and I didn’t think to mention the new school thing to my rheumatologist when she called to check in on me. She was really displeased about that, because she said she would have liked to put me on low-dose prednisone for a few weeks to get me through the flare. On the plus side, she does seem to think that I can manage this MBA from a medical standpoint now that I’m through the flare, so that’s reassuring to say the least. I probably should have discussed adding part-time school with her first… whoops?
Part of the problem I’m having is that going to class at all these times limits my exercise regimen. I don’t get to the gym enough to get my cardio in anymore. Also, the yoga classes that I’ve been going to for years are Monday/Thursday evenings and Saturday mornings, so I can’t go to any of them. This is seriously problematic. Not enough exercise means that my pain levels spike. Without the cardio, my muscles cramp up more. The lack of yoga is not doing my joints any kind of favors. Oh and my stress levels don’t get managed properly, which is never good for my health. Especially since I have even more stress now. I’ve been trying to compensate by doing yoga at home. This is helping my joints, but it doesn’t seem to have the same beneficial effect on my stress levels that an instructor-led class does.
Unfortunately, the exercise can’t be cut any more than it already is…. And I really can’t afford to get any less sleep than I’m getting which is already slightly less than the ideal minimum. This means that, unfortunately, my social life gets cut because it’s the one thing that can go. It isn’t great for my mental health, but there isn’t much else that I can cut. I’ve stopped watching most of the shows that I used to watch, which has helped. I’ve also barely read anything. Now, those of you who know me in real life, or via twitter, know that without my reading time I basically lose it. So this not reading is not so good. Plus, I feel completely out of touch with my twitter friends and I haven’t been posting to this blog nearly as much as I wish I were able to. This month, I’ve been trying for a better balance. I cut another TV show so that I can read more. I run 15 minutes less every run so that I can have coffee or dinner with friends once a week. Dating is out of the question right now without majorly cutting something else. Believe me, I tried. (But that’s a story for another post…)
It’s hard to do everything, and there isn’t really any perfect way to do it all because there just aren’t enough hours in a day. I can’t say I’m satisfied with the balance that I’ve struck. I don’t have enough time to keep up with anything, and I feel like I’ve been doing a mediocre job of everything as a result. I’ve been trying to keep my head above water by balancing everything, but it isn’t working. I think I’m going to try being content with swimming just under the surface for a while and see how that goes.
This post is part of a Patients For A Moment blog carnival that Lorna is hosting. This month’s PFAM blog carnival topic is “change.”
When I first got diagnosed with lupus at 16, after 6 months or so of testing, I got really lucky and the first round of prednisone pushed it into remission. The doctors were surprised, but obviously really pleased. As a result, though, I didn’t really have to learn to live with the condition until it flared back into existence 5 years later. For the purposes of this post, I’m going to focus on the changes that have occurred in my life from that point forward.
To say “everything has changed” might sound a little melodramatic, but the truth is that very few things are the same as they were before. Every hour of waking time is different from what waking time was like before. Sleeping hours, when I manage to sleep in the first place, are also a whole different situation. My relationships – with friends, family, and potential partners – have all changed too. People think that dealing with a chronic illness means just dealing with the physical illness and maybe its mental effects like the frustrating brain fog that makes me forgetful. Oh and maybe the inconvenience of swallowing lots of medications.. but there’s a lot more to it than that.
First there are all the things that I can’t do because they’re too physically challenging. Contact sports are out, and I can’t run because it makes my knees swell so anything that requires running is out too. I get tired too easily to be on my feet all day, but sitting in one place for hours is rough too which makes long distance travel difficult. This means travel is hard in general (for many reasons, of which this is only one). This impacts hobbies and outings with friends as well as travel and family events.
Changes in weather prove to be a huge problem too. I think sudden changes in weather are a problem for everyone to an extent.. outdoor plans get cancelled, you suddenly need an umbrella, or a hat, or a sundress, etc. However, changes in weather for me can be debilitating. Rainy days make my joints achey. Extreme heat or cold also leave my body aching and often drain my energy. Plus, sudden changes in temperature have similar effects.
Then there are the changes to life plans. When I went into that flare, I was in medical school. I was forced to leave that program, and won’t be able to go back to medical school. So now I’ve had to reassess the rest of my life from a career standpoint. There are some careers, like medicine, that I can’t manage not only because the rigors of the education required to get there are more than I can handle, but also because the hours and time on my feet involved in the career itself wouldn’t be possible.
Even eating isn’t easy anymore. With all the meds that I take, I have to arrange appropriate food at appropriate times to coincide with not only the timings of my medications doses but any requirements for what they need to be taken with. I also have a lot of trouble with nausea, which makes eating hard. Sometimes my pain levels contribute to the nausea too. Then there’s the fact that gastroparesis makes it difficult to eat much in the first place, and end up throwing things up fairly often. Plus there are eating restrictions – like I can’t have soy milk.
It’s changed my relationships with my family members too. Dealing with a child’s illness is an awful lot for a parent to deal with, and my parents sometimes deal with denial or denouncement. My sister tries to help when she can, but sometimes too many offers of help can be frustrating too. I feel like a burden on my family, which is something I never had to deal with before.
Making plans with friends is hard, because there are a lot of things that I just can’t do anymore. Oftentimes, I don’t know for sure that I can make it until the last minute which means that I flake out without much warning. While most of my closest friends are understanding overall, it still strains the relationships. I feel unreliable, and it’s hard to make plans very far ahead.
Having a chronic illness also has a huge impact on my love life, or lack thereof. Dealing with all the ins and outs of a chronic illness is a lot to ask of a person who doesn’t know you all that well yet. It makes dating hard (see plans with friends above). It also makes it hard when you start talking about what a life together would be like. I’ve found that it’s a deal breaker for a lot of people. And while I know I should be holding out hope for that one person who won’t care, it’s a frustrating experience all around in the meanitme.
All in all, pretty much everything has changed.
I think almost everyone who has been diagnosed with a chronic illness has at least one horrifying story of how something has gone majorly wrong. If we spend that much time getting complex medical care is it statistically inevitable that something is bound to go wrong at some point? I hope not, but with diseases that require a lot of juggling and refuse to follow a standard pattern…. That being said, many of our experiences, like mine, can be chalked up to nothing more than negligence or disrespect for patients.
When I first became ill, my lupus completely failed to present like a textbook case. This is a common occurrence, which is why so many people are not diagnosed for years on end. In any case, one day I found myself so intensely dizzy that I couldn’t stand up on my own without tipping over. My mom freaked out when this wouldn’t stop, and as it was after hours by then, rushed me off to the Emergency Room.
We waited for hours to be seen, but were eventually led back to a room. A doctor came in and asked a few perfunctory questions. Then she said she needed to do a lumbar puncture to see if the spinal fluid could give us any answers. I thought she’d tell us to go see someone in the clinic the next day, but she said that she didn’t want us to wait that long so she would do the procedure herself – immediately.
I don’t know if you’ve ever had a lumbar puncture before. I was told to basically curl up into a fetal position. The first step was to numb my skin. Then more anesthetic was injected along the path that the needle would go. As that anesthetic went in, I informed them that my skin hadn’t numbed since I could feel that needle. I was told that sometimes it takes awhile for the numbness to set in. I had to wait a bit for the numbing agent to work, and then the doctor came in to do the procedure.
That anesthetic didn’t do a damned thing. I felt that huge needle boring into my spine.
It hurt. Like hell. A needle going into the spine is a completely indescribable feeling. As I write this, I can still feel that needle going in and I’ve gotten all squirmy. I’ll never forget that feeling as long as I live. The doctor just told me shush and that I couldn’t actually feel it. Apparently, I was just scared and so I thought I could feel it. Right. I was awfully tired of this “it’s in your head” sentiment as I heard it often in the days leading up to my diagnosis. I told her very firmly this was not the case, and that I really could feel the needle going in. She told my mom that was I was just scared. She asked my mom to hold me still and quiet me down so the doctor could focus on the procedure.
Now, I am a strange person who can’t scream on command. I’ve never been able to scream on command, and as far as I know I have never before or after screamed at all. Oh but at that moment I was screaming bloody murder. To be fair, it kind of felt like I really was being murdered. Another doctor came rushing into the room to see what was happening. I managed to tell him in between sobs and whimpers. It was not pretty.
It turned out that the doctor who had been treating me was a resident. The new doctor, who turned out the be an attending, had me checked into the hospital to do the puncture the next day.
When I was checked in, I told the attending on that floor that I didn’t want that resident anywhere near my room. She worked in the ER, so there wasn’t really any reason why she should be treating me once I was checked in but I wasn’t taking any chances. I guess this attending (and perhaps the one in the ER) must have logged my complaint somewhere. The resident showed up the next day absolutely livid. She informed me, in a tone that belied her words, how sorry she was that the procedure had not gone well. The anesthetic had been given properly, so she wasn’t to blame. However, it was a hard procedure, and I shouldn’t have made such a fuss, because now she was in big trouble. Didn’t I know that a student has to learn?
I informed her that learning to do something on a patient shouldn’t mean torturing the patient. Moreover, if she wants to learn to treat patients, she ought to learn the basics first: listen to your patient, damnit! She should have listened to me when I told her that I could feel it, instead of just shushing me. My complaint wasn’t about how she did the procedure, it was that she had no respect for me as a patient. She ought to learn that first. I didn’t mince words. She flounced out of the room in a huff. Sometimes I wonder whether she ever got anything out of that experience or she just wrote me off as a horrid patient that got her in trouble for no good reason. One can only hope..
In any case, they finally did the procedure under general anesthesia, because there was no way in hell that I was going to allow that procedure to be done while awake. Ever again.
After all that, the results from the spinal fluid came back negative. Figures.
This post was included in the Patients for a Moment: Starting Fresh blog carnival hosted at chronicbabe.com.
A couple of months ago I started a new job. My Twitter friends were probably sick to death of hearing me talk about job applications – it took an entire year and a half to get one. I did find a good job finally and I’m happy about that, but it’s also hard to let go of the career I was SUPPOSED to have. Since high school, I worked towards a medical career. I took the advanced science classes – and sacrificed sleep to pass them. I put in the hours of lab research and community service. I shadowed doctors at ridiculously early hours of the morning. I even got in to a great medical school program and started attending classes. Then the lupus reared its ugly head and all of a sudden that dream was just gone. There was no way the crazy hours and high stress levels were going to get along with my lupus, so I was forced to leave the medical program. I think I’m still mourning that loss. I see my new job as a poor substitute for the life I wanted, and that just isn’t a great way to face the world. It certainly doesn’t help that my new job is in clinical research – a field that I was trying to run far away from because I knew it wasn’t where I wanted to be. It’s definitely not something I want to do full time for the rest of my life.
It’s so frustrating when people say things like “Oh well, that’s ok, you can just find another career.” Well, sure, I can find another career, but it won’t be the career I wanted. The one that I dreamed about and spent 10 years working towards. That one was taken away from me by factors beyond my control. I know people mean well, but those comments just aren’t helpful. And then there are comments that I get from other members of the chronic disease community. Things like “Why can’t you just be grateful that you can even manage to work fulltime. I’m never going to be able to do that again. I wish I could work somewhere – anywhere.” I get where they’re coming from. The loss of life goals and feeling like we’re stuck on the fringes of society outside the circles of “respectable” citizens that do their part is a very difficult part of the chronic disease reality. I certainly don’t mean to undermine their feelings when I complain about my job situation, but I also shouldn’t have to hide my feelings from my friends. Everyone’s life is affected differently by these diseases, even if the overarching themes are the same.
It probably isn’t great for my mental health to see my life in this pessimistic light all the time. So I think my new goal is going to be to remember that just because this is where I’m working now doesn’t mean that this is where I need to end up. I’m not stuck here and it’s time to stop being so bitter about what I’ve lost and start thinking about what I can still achieve DESPITE the lupus. It sounds so simple in theory, but I think it’s going to be even harder than I can possibly imagine. But all I can do is to try to keep steering myself towards the attitude that I want not the one that comes so easily right now. I may have started my job a couple of months ago, but I think the true fresh start is happening now.