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Wednesday was my 18th MRI. (I went back and counted, so I’m pretty sure I’m right.) 18 MRIs in 10 years. Nearly 2 a year.

3 brain surgeries.  1 radiation treatment.  1 other surgery. (I never talked about it here because, unlike my other surgeries where we’ve spent time discussing the unlikely possibilities of death, paralysis, and blindness, this time we talked about the unlikely chance of a blood transfusion.  I’m fine, it helped with what it was suppose to help with.)  Migraines.  And countless orders for bloodwork, medicine scripts, and pills.

10 years.

It is unfair.  It is burdensome.  It is invasive.  It is hard to explain to other people.

It is my life.  It is all woven into my life to the point where I no longer really remember “before” except that it was.  It is all woven into my life so that my life is so much more, and always connected.

18 MRIs, 10 years, 3 surgeries.

 

I had a doctor’s appointment this past week.  Which is not remarkable in and of itself.  I have a lot of doctor’s and they all require a visit from time to time.  But this doctor offered to take me off one of my medications, to see if I really needed it.

Medically, she is right.  There is a decent chance that I could wean off the meds without a return of the pain, the constant pain, and life would be fine.  Actually, life would be slightly better.  Less pain, less medication.

And yet, and yet, I said no.

I’ve talked here before about how hard it is to be healthy after you’ve been sick, and as I walked out of the doctor’s office I wondered how much of my no was about that.

Most of my no was about other things though.  I’ve only been pain free for about a year.  And I’ve spent most of that year re-learning how to tell when I’m in pain.  (I’m well aware of the depths of the problems in that statement.)  So I don’t trust myself to know if the pain did return if I stopped taking the medication.  I occasionally miss an evening dose and I notice that the next day.  The medication has few side effects, so staying on it has few negatives.

Someday, I hope, I look nervously forward too, I will get to say yes to this offer.  Despite how hard it is psychologically.  Despite how much easier it is to keep saying no.  Despite how scary it sounds.  Despite the open question of whether or not I can actually live, pain free, with out the meds.

But for now, for a lot of reasons, I’m staying on them.  One more pill.  It’s the right choice.  For me.  For this season.  For however long this season lasts.

Or why my migraines took forever to diagnose.

I have migraines.  I have officially had migraines for about 8 months.  I have had migraines unofficially at least since my second surgery.  Which was 8 years ago.

That’s some difference.  8 months and 8 years.

The reason?  Is simple.  I’d already had surgery twice to remove two brain tumors.  One of the first signs of a brain tumor are headaches.  To be clear, my tumors tend to asymptomatic.  Further, headaches have never been a symptom of my tumors.

Still, when I walked into many different doctors offices and said, “I’ve been having these headaches.  What’s up?”  The response from many different doctors, most of whom I have respected and liked, has been, “When was your last MRI?”  And it was never that long ago.

So that was pretty much the end of that conversation.

And the headaches never really ended.  And because surgery had always been so recent and because they were never ‘typical’ migraines and because my life was so unsettled and because I don’t like doctor’s offices….

I just never really fought to get anything diagnosed.  Because it was so hard.  Because I didn’t know how to fight that fight.  Until it got too bad.

Because my other diagnosis, my past got in the way.

I made an extra doctor’s visit this year.  I don’t like the doctors.  Truthfully, I don’t know many people who do, but the thought of a doctor’s office has been enough to keep me dealing with pretty severe pain for an extra six months rather than schedule an appointment.  (True story, not one of my better self-care moments.)  So when I say I made an extra doctor’s visit this year, please hear that statement with some impact.

One of my medications had failed.  Spectacularly failed.  Kept me down and from work for the better part of a week failed.  Massive pain.  Barely scraping together the work I did do.  Not acceptable.  So once I’d pulled my head far enough away from the Ibuprofen bottle, the largely ineffective Ibuprofen bottle, and managed to think clearly enough to figure out which doctor to call, I scheduled an appointment.  (And then the pain kept being bad enough that I wound up in Urgent Care just to make sure I wasn’t crazy and they gave me some better drugs.  Bless them.  So I actually saw doctors two extra times.)

I like this doctor.  (I don’t go back to any medical professional I don’t like.)  We went over my symptoms and their progression and talked pain scale.  And then she started to talk about a diagnosis and changed my medication. So far it’s mostly working.

It’s not a great diagnosis, but it’s something I’ve been waiting six years to hear.  It took three years before the symptoms were bad enough to get me to a doctor’s (this includes that six-month period I mention above).  And then three years while the first round of medications worked without a proper diagnosis.

But you can’t go to a doctor with “I think there’s more to my now symptom-less problem.”  So after six years I have a diagnosis.  I can start asking for treatments and medications that will be effective.   I can stop wondering if I’m crazy, if this will fail, guessing about a cloud of mystery.

Because now I know.  Now my doctors know.  Now we can do something.  This is the power of  a diagnosis.

Last time it took three years.  Three years to feel like I had my body, my energy, my life back.

This time, it’s been two, mostly.  Two years and a couple of months since my last surgery, which is the date I celebrate, and will continue to celebrate.  But for the marking of how much longer it will be until I might feel like I have my body back, it hasn’t been two years.  After surgery there was the radiation.  And after that there was The Headache.  And recently I’ve discovered that the headaches never really stopped.  So the amount of time since my body has been dealing with a significant health issue?  Well, I’m not really sure.

Two years since surgery.  A year and three quarters since radiation.  A year and a half since The Headache ended.  A quarter year or so since the migraines have been under control.

I don’t know how long it will take this time.  I don’t even know when to start the clock.

Last time it took three years.

I’m mentioning it more often.  It’s not that I ever insist on not talking about my surgeries, it’s just that I also don’t insist on taking about it.  And in the last few weeks I have taken opportunities that I usually would have passed on.  At the slightest opening, I’ve mentioned my surgeries.

It isn’t a mystery to me.  The second anniversary of my third surgery is next week.

My surgeries are on my mind.  I’m trying to figure out what this means.  I’ve survived two years since my last surgery.  And it doesn’t feel like two years.  It feels like one year.  Which, in some ways, it has been.  A month or so ago was the one year anniversary of the end of The Headache.  Which means that it’s only been a year since there wasn’t something significant and negative going on in my body.

Today this is what I know.  Every surgery is different.  Every recovery is different.  And I’m not done talking, speaking, writing about that.

I watched Survivor last week.  I don’t usually.  But that episode has made me think.

Apparently, it’s been raining, a lot.  (Which is something that happens in places like Samoa.)  And Russell, who is the captain of the winning tribe, spent a lot of the first several minutes of the show trying to keep the fire going.  While his teammates comment on this fact and how hard he works and if it’s really a good idea in this case.  Then Russell comes into the leaky shelter and comments that he needs to raise his body temperature.  All of this is what happens when it’s raining stuff until Russell collapses twice at the inter-tribe competition.

The on-site medics come over and assess Russell.  The competition is declared over and more information will come at the tribal council.  Of course, one of the camera crews stays with Russell and the medics.  And we see Russell being cognitively out of it, hear about some blood pressure and heart rate concerns, and see him collapse yet again before Jeff Probst announces that they are pulling Russell out of the show for medical issues.  (Russell tries to protest and, during the closing credits, talks about how hard it is to have to leave because his body couldn’t handle it.)

Elsewhere there has been some recent discussion about how disabilities are, or rather aren’t, represented on TV shows.  Russell’s exit from Survivor isn’t about that.  But it is about how part of ableism is the assumption that your body should be able to do what you want it to. I know better.  I know that other people do too.  I’ve been ruminating on this episode (oddly titled “This is the Man Test”) as a sign of our cultures obsession with doing it all and insistence on health as a default–even to the point of being unhealthy.  I’ve been thinking about how out of touch these emphases actually place us with our bodies.

And I’m wondering what everyone else is saying about Russell leaving.  Because I don’t think his body failed him.  I think he failed his body.  I think his game strategy interfered with his ability to make responsible choices about his health.  I think he failed to take care of himself and this resulted in his leaving.  It was bad strategy of the kind they don’t feature on the show.

I read this quote sometime last week:

“Throughout history, the way women have gained control of the female experience is to talk about what is happening, and what it’s like. We see that women’s lives are more enjoyable, more full, and women are more able to summon resilience when women talk openly about their lives.”

It struck me, not because I feel that I as a woman am not allowed to tell my story.  But because I as a person who lives with chronic and repeated serious health issues am not allowed to tell my story.  I can name some of the reasons which are not unknown to us all: a cultural obsession with health, a need to not be vulnerable.  I can name some of the reasons which are less spoken of: a basic lasting stigma of illness, a desire to medicalize all things related to illness rather than approach the experience of them, the need for illness to be among the things in life that we can fix.  I know these things and I have already chosen not to let them dominate how I live with my illnesses.  And yet there are stories from this weekend that I want to tell, but haven’t started to write yet.  And yet, when I started this post it read, “I read this quote yesterday.”

Penelope Trunk, the author of the above quote, was writing about her decision to be open about her miscarriage.  She has taken some heat for that decision.  (Apparently miscarriages and potential abortions are to remain in the private sphere of life.)  Ms. Trunk has a tendency to be incredibly open about her life.  I don’t necessarily want to draw my boundaries where she has drawn hers.  But I do want to draw my own boundaries, not have them delineated for me.  So today I will post this and start writing the stories of the weekend.  Because I think I should.  Because they are stories a lot of people don’t tell or hear.  But mostly, because I want to.  This is my life.

Yesterday was the 5 year anniversary of my second surgery.  Yesterday was not the celebration of 5 years since my last surgery.  Because 1 year and 4 months and some days ago I had surgery for the third time.

Which means that in about 8 months I will be able to celebrate 2 years since my last surgery.  And I will.  I have learned that celebrating the post-surgery years is good for me.  I will make plans and invite and inform friends and family–not all of whom will understand but many of whom will rejoice because I will.

Today, though, I miss the celebration that isn’t.  Today I wish that my life were just a little different.  Today I think that this is not helping the headache I have.  Today has become, somehow, about many of the ways in which my life is Not Fair.

My life is not today.  Today is a part of my life.  So tomorrow I think I will start planning a celebration for one year after radiation.  Tomorrow I will think about how to celebrate two years since my last surgery.  And I will let today be a bad day.

The best thing about Tuesday is that it includes the Health and Science section of the New York Times.  As I no longer live in a city where I have easy access to the NYT and I never did make it through the entire paper,  (I consider myself a news junkie, but I don’t have the time for that level.)  I have the headlines delivered to my inbox.  This week it includes an article written by Loren Berlin about life with her chronic illness.  Ms Berlin writes beautifully and the article is worth reading just to enjoy her skill.  I’m mentioning it here because next week is the one year anniversary of my last surgery and Ms Berlin’s article speaks beautifully about much of what I too am feeling.  About being caught living the life you have today and living with the knowledge that life is less certain than we like, that this could, or in her case will, happen again.

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