The Only Thing To Fear Is Pain Itself

6 Comments

As the years pass by and I am still a chronic pain patient, I wish I could say that I have become more stoic about pain. Rather, I feel like I have become more and more apprehensive about any type of malaise, to the point where as soon as I start to feel worse than normal, I flood with fear in addition to whatever other symptoms I am experiencing.

What is funny to me is that around other people, invariably if the topic of pain comes up, the other person will almost always say, “…but my pain is nowhere near as bad as yours…” Now I have no idea if that is true or not. Pain is one of those things that is impossible to measure. It’s very subjective, and at the end of the day, who’s to say whether one type of pain trumps another or one person’s “toughness” is more than someone else’s? All I know is that pain hurts. Being in pain is a pain. It’s a drain on your life and your resources on every level, and if you have pain, you suffer. It could be that my pain is really mild and I am just a big baby. Maybe I just talk about it more than other people. But the bottom line is that I am in a place with it right now that I need to get out of.

For the last few months, I have been reading lots of chronic pain blogs and books. I was looking for camaraderie, but I also wanted to see if there were any answers out there that I had overlooked. Maybe someone else had new ideas that I could benefit from. As much as I want to just accept that my circumstances are permanent, there will probably always be a part of me that can’t settle with not hoping for a miracle cure. It’s a tough balance to live in the present and not spend all my time chasing medical interventions, but still keeping my brain plugged into the developments out there that could really help me one day. But all of this reading has made me feel very anxious. Instead of feeling better that there are so many other people out there suffering along with me, I have started reliving my medical procedures and hospital stays right along with the people I am reading about. With each crash I am having in real life, I have dozens of voices in the back of my mind reinforcing that this type of situation is desperate and awful. Yes, I know it’s time to quit reading, but the problem is that I can’t quit being sick.

So laying in bed feeling horrible isn’t just horrible because it objectively is, it’s horrible because I know it will be like this for multiple days, because I know there are no medications I can take to make it better, because I know I don’t have a doctor who really understands what I am going through- and even if I did they couldn’t help me anyway. Instead of toughening me up toward pain, every spike weakens my resources for dealing with the next assault. Sometimes I have time to catch my breath between crashes, and sometimes they overwhelm me and drown me like waves in a stormy sea. Sometimes I feel like there are sharks in the waves in addition to the choppy water. Sometimes I feel like I can’t catch a break.

On the other hand, I am so blessed that I have many more resources than lots of other people with chronic conditions. I have a supportive family, with wonderful kids who help a lot and an amazing husband who always wants to do what he can to take pressure off me and make me feel better (a Sisyphean task if ever there was one). We can afford to order certain things online so I don’t have to go out to stores, and we can get convenience items that make life easier (I am currently feeling very spoiled that I have a canister of lysol wipes in every room). I have friends who drive carpool for me every single day (yes, this is a recurring theme that driving is a big trigger for some of my symptoms). I want to focus on gratitude, but I am too bogged down by PTSD.

So, what’s a chronic sicko to do? The fact that I am tormented mentally is not the same as saying that my pain is mental, although many people confuse these two premises. I am terrible at mind games like meditation or relaxation, but I am always open to trying something that I haven’t heard about before. Someone on an older post mentioned massage (maybe MelissaJoanne?), but I’ve gone a few times and it just made me sore- so if you know about this modality, what should I be asking for that I’m not? If you know of books or websites or blogs that you find uplifting, please let me know; I’m not at saturation point yet with information. And if you can pick up on something I am missing, please bring it to my attention. One of the things I am most grateful for in my life is all of you, who are always there, having my back, being great resources, and staying strong for me when I am crumbling.

Right now I’m holding my own, but I would love for you all to weigh in on this one before I crash again.

If you comment on this post, hug yourself for me! :)

The Numbers Game

13 Comments

For people with blogs there is always a temptation to pay attention to how many people are reading your blog. It can be a great feeling to know that things you say resonate with people, or that something you talk about has the ability to touch a person’s life. It is very ego-gratifying to feel like you can reach across cyberspace into someone’s mind and have an impact on their deepest emotions. And if you are sometimes arrogant enough (as I am) to believe that you can offer a unique perspective, your ego will be stoked even more when you know that a certain post got x-number of views.

But that is kind of a dangerous game to play, because it makes you a bit of an intellectual whore. It puts you in a position where you are ripe to sell your ideas to the number-iest bidder, and write or not write posts depending on how you think they will be received. I will confess that as out-there as I can be when there is something that I want to say, there are topics that I avoid altogether because I know they will drive people away from the blog for no good reason. That makes me not want to look myself in the mirror, but when I see that I can lose (I am not making this up) literally hundreds of readers in a single day over taking a position on something that could be on the blog or not with no consequence either way, it’s kind of hard for me to justify putting things on the blog that I know will make me a blog-o-pariah.

If I talk about being sick and people drop my blog because they signed up to read about the garden and this isn’t really a garden blog any more, then it makes me sad, but I kind of have to just let them go. I am what I am and I’m not what I’m not. You won’t really find any more juicy gossip about my battle with the city of Oak Park on these pages because, for starters, I live in Seattle now. But if I write something about being a religious conservative and people drop the blog I feel kind of cheated. Sure, they can do what they want, but I feel like I want to email each of them, like, “Really? Has my writing gotten worse now that you know this? Did you like what I had to say about everything, but now that you know that I’m pro-life you suddenly find me intolerable? What changed about my blog in this moment that made you unsubscribe, except that now I am politically incorrect?” I don’t know why it bothers me so much more, except that I know that it does.

The funny thing about blogging, though, is how unpredictable readers can be. There are posts I have written where I have such a high afterward. I was full of adrenaline as I was writing, and I was sure people would love what I wrote as much as I did- and then I will get like 2 comments and people will be mostly neutral. And I can write something I think is so-so and people will go nuts. I have checked the comments sections of the blog to find so many comments I assumed the spam filter wasn’t working right, and have gotten enough emails privately about some posts to let me know what I wrote made a big difference- and often that happens on posts I never would have imagined.

For the first year or so of the blog, I had a policy not to check the stats. I had no idea how many subscribers I had, and I only knew how many people liked the facebook page because at one point *h commented that the number exceeded the number of residents of the city of Oak Park (it has since fallen by many thousand). Even after the fist year, I would only check sporadically, but now I check more than I should, and I will tell you that it only makes my writing worse, not better.

So why do I do it? Because I’m human. I think we are all looking for that ego-hit or that rush of excitement and I have been spoiled by getting it from the blog. I think I should wean myself away from it- or maybe each of you should recruit 10 friends to subscribe to the blog to make me feel better ;)

Anyhow, I’m off to make supper, and maybe my kids will tell me what a great job I’m doing. More likely they won’t, and Epic will have had an accident, and when I check the blog later another x-number of people will have dropped off because if this lame post. And maybe that’s okay. Part of life is learning to live in between the doses of ego-gratification, and finding the joy in the mundane.

I don’t ever want to be in a place where I settle for mediocrity from myself, but I would like to be in a place where I feel fine about posting, regardless of how many people read it.

Guess I still have some evolving left to do…

*h Wages War On Pot

10 Comments

More than a handful of years ago, when I was still completely bedridden, my father brought food from a local deli to my house for lunch. At that stage, I wasn’t able to keep too much down and was mostly existing on IVs, but from time to time something would seem especially tempting and I would try to eat. *h walked into our room eating a piece of corned beef, and for some reason it peaked my interest. I asked him to bring me the bag full of meat so I could pick our a few pieces.

Being extremely helpful, *h chose 3 slices of meat for me and put them into a sandwich bag, which he brought to me in bed. He knew I couldn’t eat a lot, and he didn’t want me to waste, or to get overwhelmed by how much meat was in the serving bag, or something or other. He thought he was doing me a favor. And apparently what he thought I wanted was the delight of eating out of plastic, which he was graciously providing to me.

Unfortunately, part of the charm of me having the meat was me choosing my very own pieces, like an actual adult. Being super sick and bedridden didn’t offer me a whole lot of opportunities to exercise free choice, and here I thought I had a chance and someone snatched it from me. But since I didn’t say that (in fairness, who would think to say that?), I just fell apart when *h walked in with the tiny baggy of meat.

Being extremely helpful myself, though, I didn’t rip *h’s head from his shoulders. Instead I did what any normal adult did and burst into tears and threw the meat into the trash and refused to eat. It was hard then and it’s hard now to be an independent sort of person who needs to rely more than I would like to on other people for help. It’s hard to be an adult who gets treated like a child because of my illness.

In our kitchen, I have various pots, pans, and gadgets. I don’t own any that are extraneous, and I don’t buy things that I don’t need. One pot, which I bought when I lived in Israel, is the perfect size for soup. It works really well when I need to make multiple packages of pasta at one time- which is pretty much every day. It is a great shape, easy to wash, and has some sentimental value to me. About a year ago one of the handles broke off, but I still have no problem using this pot, and if I need to lift it up to dump anything out of it, I just wrap a towel around it.

Since I consider myself a fairly competent adult, especially in the kitchen, I think I manage quite well- even in spite of my pot’s obvious imperfection. This pot, however, drives *h bonkers.

Now I should say up front that I never ask *h to use this pot. I never ask him to cook anything in this pot, and if he needed to make supper or something, we have other similar pots he could use just as easily and he would never have to even acknowledge the existence of this pot. But just the idea of me owning this pot bothers him beyond all reason.

He says he is afraid I will burn myself one day when draining pasta, and he has periodically both suggested I replace this pot and tried to recruit other people in his campaign to get me to get rid of it. I have told him repeatedly that I like my pot and I think it is fine, and since I am the one who is using it, he should just get over his annoying pot habit. Competent adults should get to decide for themselves things like whether or not a pot is safe to use, don’t you think?

A few nights ago he came home from a shopping trip and had a surprise for me held happily behind his back- complete with goofy grin on his face- guess what? a new pot for me! How exciting! He was so proud that he found something just the right size and just the type he thought I would like, and it was even a great price!

If only I hadn’t told him 5,973 times that I didn’t want a new pot…

In the end I did something very un-Julile-ish. I got rid of my pot and put his in the cabinet. I guess *h won the pot war. I will admit to being very perplexed lately about why people do some of the things they do. The official story here is that *h cares about me and doesn’t want me to get hurt. Unofficially? I guess we had a psychological arm-wrestling match and I lost.

If any of you have some spare time, perhaps you should organize a search party. When you find Julie, let me know, because she clearly appears to be lost…

It Was My Mother

12 Comments

Yeah, it was my mother who blew off my birthday.

Does that change anything?

And the person she trashed me to was one of my kids.

I called her house last night to speak to my grandma, but didn’t bring up the birthday issue cuz I was waiting to see what you guys would say. We ended up talking for about an hour about this and that, and she of course acted like everything was fine.

I’m the firstborn, and she isn’t senile, so it’s not like this is something that would have just slipped her mind.

I want this not to be something that is painful for me, but it obviously is, which is why I’m writing about it on the blog.

Her phone hasn’t been broken, she has sent texts to my kids, and she mailed a card to one of them a few days ago, so it’s not like she didn’t have stamps or couldn’t get to the post office. I keep trying to find a way to make this something palatable, but the truth is that it’s just ugly and mean.

When do we get old enough to not care what our parents think or do?

Sigh.

I want to be the person who glories in the fact that people I never met on my blog care enough to wish me a happy birthday, that my husband and kids are around and they are who matter, and that I have friends who would be there for me in a nano-second if I needed them. But instead I feel like a failure that I am letting myself be dragged down by someone who obviously has issues of her own that she would be so cruel and passive-aggressive (no, the birthday thing was not an isolated incident, but this has been the most recent and flagrant).

So now that you have more info, would you change your answer? Would you give me more or different advice? And please someone tell me how I can stop feeling so broken just because I am attached to a broken situation.

Unhappy Birthday to Me

12 Comments

Remember a dozen or so posts back when I said maybe I should check in with you guys before I made any major decisions? Well here is your chance to weigh in on a rather big one.

My birthday recently passed and someone who should be very central to my life failed to acknowledge it in any way. I am not usually one to stand on ceremony about this type of thing; I don’t do Mother’s Day (except to call my own mother and grandmother) and birthdays in our house mean that the luckily-born person gets to choose what we eat for supper that night. We don’t go in for a lot of hoopla and I’m not a mushy-gushy sentimental type. Whoever said that diamonds are a girl’s best friend was not my friend, and people who think you need a tchotchke to commemorate every occasion have no idea how much more I value clear space over clutter. So in general I could do without sentiment when it comes to Hallmark holidays.

But you know how everyone has that certain inner-circle of people who knows your special days and your important milestones and is supposed to at least check in from time to time to let you know you are thought about? So this was one of those people and this person let my birthday pass without a phone call, email, text, card, or acknowledgment of any sort. Officially there is nothing wrong in this relationship, although this person’s actions would say otherwise to me. So here is my question:

Is it worth me calling to ask what happened? Is it better to just make an excuse (which I will know in my heart isn’t true, so it won’t honestly give me peace) and let the other person save face and continue to bear whatever grudge they have and act like everything is fine on the surface and just know that this person obviously wants to passive-aggressively get back at me for something? It isn’t viable to say they forgot, since other people in the same circle didn’t forget, and would have mentioned it. Also, in the interest of full disclosure, this person said something really nasty about me to a third party a few weeks back, but whenever I have asked if there is anything we need to talk about to clear the air, this person totally acts like I’m crazy to even ask.

So my question that I would very much like you to help me sort out is, do I confront or cut my losses?

What are the pros and cons as far as you can see in terms of calling or not calling? The times I sometimes make the worst decisions are the times I am closest to the fire, so this is prime blow-up territory… So, in the interest of having my back, what do you think?

Things It May Be Hard For People To Understand If They Don’t Have A Chronic Illness

2 Comments

1) Although our lives are full of doctors and pills, we don’t fully believe in the curative powers of medicine;

2) Sometimes we can be too fatigued to do things like bathe or brush our teeth, although to a well person those things seem to take no effort at all;

3) We may at times wish we were dead, but that doesn’t mean we want to kill ourselves or that we are suicidal. They aren’t the same thing;

4) If we act sick, we are drama queens, basket cases, or worse. If we endure in silence we are closed off and shut down. So we are in a lose-lose place when it comes to telling you how we feel. And since there is no accurate language to describe pain or feeling unwell, we know you won’t understand anyway;

5) We are the best experts on our health conditions, so if we tell you we need a sweater when it’s 86 degrees or that the lighting in Costco causes us vertigo or that the smell of violets nauseates us or that only a certain brand of vanilla ice cream soothes our stomach- it may all be confounding to you, but we come by this knowledge the hard way, so please believe us. (The corollary to this is that, if you are chronically ill and you complain about nonsense or milk your condition for pity when you need other things or make up symptoms to get attention, you delegitimize the rest of us and make it that much harder for us to be taken seriously. So, please, think twice before you decide to go big with a minor annoyance- chronic illness is not a permission slip to be a whiner or to have shoddy communication skills…);

6) Just because we suffer, it does not make us more noble. It just makes us know how to suffer. We don’t have any special life wisdom; we just know a lot about hospital bureaucracy and medical terminology. This can be a very big let-down to non-sick people, so let me apologize on behalf of all of us for disappointing you;

7) We are still people. So it still bothers us if our new medication makes us gain 80 pounds or lose our hair or get bad breath. Yes, we wish we could rise above it in the quest to be well, but really, we struggle- just like you would if it happened to you (see #6);

8) We do have good days and bad days (or better days and worse days), just like anyone else. But that doesn’t mean our illness goes away. It is always in the back of our minds, always governing what we can and can’t do, always waiting to swoop in and steal our fun. So even our good days have a dark shadow in the background. We live with that the best we can, and some of us do a better job than others;

9) When we tell you something you can assume we are honest. Most of us have stories that are counter-intuitive to non-sick people, about hospital mix-ups or drug side effects, or conversations we have had (yes, I did spend 3 hours on the phone with my insurance company). Even if you have to suspend your disbelief, our universe is as real to us as yours is to you. It’s just that the rules are more topsy turvy;

10) We still want to be a part of the world, as much as we are able. So please don’t exclude us or assume we would rather be alone. By default, we spend a lot of our time crashed out, but that doesn’t mean we still don’t want to feel wanted. There is a fair chance we will say no, but that is no reflection on our desire to spend time with you. A lot of the time we just feel cruddy. But please keep trying (on the other hand, please never subject us to a campaign to make us feel better by “getting us out of the house” or any other missionarily zealous thing. If you think your friend is too isolated, go visit. Preferably bring ice cream. If you think your favorite sicky needs more fresh air, forego the outing and ask if you can open a window. Just like you wouldn’t want the sick person to manage your life for you, we probably don’t need you to manage ours. We are sick, not infants. I once had a well-intentioned person defrost an entire freezer’s worth of food for me- on the theory that it would give me just the right push to get up and start cooking. That would have been great if I was suffering from a lack of motivation and not an actual illness. Let’s just say it was a bad move and it wasted a lot of food. It was about a decade ago and it still irritates me when I think about it today. Get the drift?). Anyhow, please keep including us, and don’t take our lack of participation as a gauge of our feelings toward you. As with all things both sick and un-sick, if you are unclear, ask. It’s always better to be safe than confused. Now go forth in clarity :)

Don’t Ask, Don’t Tell

15 Comments

Spoiler alert: if you googled this title for information about homosexuals in the military, you have come to the wrong place.

If, however, you are here to read what in the world I would possibly say that could be connected to this topic, then get comfy and read on…

As someone who has a blog because people once knew who I was, I am in a somewhat more awkward position than other bloggers. Not to seem like I am flattering myself, but whereas some bloggers are just personas in cyberspace, I am kind of “out” as who I really am. There is no hiding behind a blog identity. I’m not Julie Bass in real life and FatMama22 online. I’m not Blog-Chick-Blow-Your-Mind in cyberspace and then me at the grocery store. I’m me 24/7, which is cool with me cuz I’m a pretty what-you-see-is-what-you-get kind of person.

Except…

Except that some of what I talk about involves my family. And some of what I talk about involves (I have been told) very private health stuff. Some of what I discuss here is cringe-y and some of it is controversial and some of it is borderline weird (depending on who you are, I guess).

So in an ideal world there should be a balancing act of some sort between what goes on in my life and what I write about on the blog. And in actual fact, there is plenty that for one reason or another I do not write about (although believe me, I chomp at the bit to write it!). The trick is in deciding how much I should disclose.

Now that I am kind of cascading into becoming a chronic illness blog (or a chronic complaining blog, depending on the day and on your point of view), this trick is even more tricky. Obviously (to anyone who really knows me at least, since they know I am a super prude) I am not going to discuss gross invasive tests or very intimate problems. But one girl’s interesting blog post is another person’s breaking point. What I think is thought-provoking is has actually provoked the thought that people can’t believe I said that in a public forum. And there is a fine line between pushing the envelope and pushing people over the edge (especially troubling when those people happen to be your loved ones).

What is head-spinning to me is that I really don’t try to be edgy. I write from my heart, and I say things for a purpose- either to process something I need clarity about or to try to help other people. I am not a shock-gets-readers kind of person, and it’s not like I’m using words that would turn up in a search if someone wanted shock value anyway.

Maybe I just have crazy strange boundaries, but it really doesn’t bother me if people know about my pain and how much time I spend in bed. When I wrote the post about suicide crossing my mind (not about being suicidal, just to clarify, so nobody needs to freak out again) I was sincere and not embarrassed- but was told repeatedly that I should have been and that I had no business at all posting something like that. It was suggested I was a bad mother for writing something that my kids could find online one day and I was ratted out to friends for being so unstable. When I explained repeatedly the reasons for the post, it fell on deaf ears and made me feel like maybe I really was crazy.

But I want to keep blogging and I want to keep being authentic.

I feel like this is one thing that I have done from the beginning on this blog. This is my voice, and whether I have been writing about the garden or our move to Seattle or about my health, I have always been real about it and that’s the bottom line. Sometimes I self-censor and sometimes maybe I say too much, but I am always struggling to get the balance right.

Going forward I will probably make more mistakes. Talking about my health is a dicey thing, and other people with chronic illness blogs struggle too with how much to disclose. Truthfully, this is all new territory for me, and since my life is not all illness all the time (thank goodness) I’m sure I will still prattle on about other stuff as well :)

Meanwhile, I hope you will all be patient with me as I figure out the right balance between what is compelling and what is just too much. I hope you will give me feedback on what you find interesting and what you find repetitive or just plain boring. I hope you will let me know if there is something you think I could be doing better- after all, I wouldn’t have a blog (okay, I wouldn’t have a cool blog) if it weren’t for all of you reading it…

Bottom line: I think I’m probably gonna keep on being me, so consider yourself duly warned. But I do hope you enjoy the ride :)

Older Entries

Follow

Get every new post delivered to your Inbox.

Join 25,109 other followers

%d bloggers like this: