Day 24. How Are You?

“So, how the hell are you, anyway, Heidi?”
“How have you been?”
“How do you feel?” (groan, eye roll from me.)

Time has been tick tick ticking away, friends.  My days depreciate.  I can feel drops of time drip past me, like silvery mercury flux, plopping, dripping medication from my IV bag.

According to the Ehlers Danlos Syndrome “genius” at Johns Hopkins, I have fewer than 3 weeks left to live.

I spend my days pretending I am not afraid.

My location has contributed to this mix of issues. Maybe you’ve wondered where have I been?

How are you?

I will tell you:  Little things bother me. For example, I am asked all the time: How are you?

You probably are as well, but I’ll bet the rent that your answer is in no way as complicated or as angst-wrought as mine, as exhausting. I am tired of talking about it. What can I say in response to the question?  I find myself stuck when someone asks.  Do you really want to know, or do you want the standard response, “Fine”?

If I tell the truth, I am complaining, even potentially worsening or lengthening my illness, since many people believe that talking about it perpetuates the sickness; if I don’t, I am furtive, suspicious, hiding something, not explaining my behavior…I am keeping it in, and thus deepening my own illness by not being willing to explore it. I feel as though I am in a stasis of damned-if-I-do-damned-if-I-don’t, though more accurately it’s dead-if’n-I-do, dead-if’n-I-don’t.

How am I? Well…..

Lungs Like Luftballoons

Sing with me: “99 Red Luftballoons….” If you don’t know the words in German, just click the link above (Lungs Like…) and hum along with the song.

You may remember that I have these pulmonary embolisms, the blood clots in my lungs.  So I finally went to get my lungs checked out by a pulmonologist, Dr. Dreamboat.  He turned out to be FANTASTIC.  It also turns out that PE’s (swanky medical slang for pulmonary emboli) are a genuine medical emergency. He put me in the hospital for a week (oy vey–there’s a whole post coming on that), horrified that the geniuses at Johns Hopkins would not have done that immediately (or directed my doctors here to do so) six weeks ago.  (Parenthetically, I should point out that my brother has checked me out and been not overly concerned.  He deals with pregnant women who frequently get PEs because their blood may have a tendency to clot more frequently than usual.  He said he can recognize when a person is “crashing” with PEs, meaning someone who is on a rapid course downward of shortness of breath.  However, he lives two hours away and is really busy.  Unfortunately, I am not rich enough–yet–to hire him as my personal 24-7-365 doctor.  But I’m just sayin’, he would not have allowed me to “crash.”)  Even so, I felt hoodwinked by Hopkins doctors; their negligence could have cost me my life.

Anyway, I am glad I did some research and found someone great here. Dr. Dreamboat is a Pulmonologist, a lung expert who deals with the intricacies of this disease, and by the time I got in to see him, I had begun to have some fairly consistent shortness of breath, which felt to me like my asthma had suddenly become quite serious.  What else could I compare it with?  I had no idea that might be serious. The fatigue, too, had become just overwhelming. “No wonder!” I kept saying, when he finally diagnosed me.

In the hospital, they performed numerous tests on me and put me on IV Heparin, a blood thinner, right away. Blood thinners are good because they dissolve those Luftballoon clots in one’s lung quickly. However, for someone like me, whose skin bruises and rips easily anyway, taking a blood thinner has the potential to be hazardous.  In my last posting, I described walking into my living room end table and the damage it did to my leg. It was a blood bath, and that was before the blood thinners.I can’t imagine that accident if it were to take place now. Not to mention, it took place five weeks ago, and the wound is not even close to healed. I don’t dare ask what happens if I were to need emergency surgery.  My brother has talked about emergency c-sections on women on blood thinners as harrowing experiences; basically, the patient may bleed out much more easily.  Yikes.

Because blood thinners have such dire consequences, my brother talked with Dr. Dreamboat for over an hour the first time, debating the properties of the various blood thinners.  He pointed out the another critical variable:  I react to drugs in bizarre ways. My drug allergy sheet is a page long, typed.  ONE PAGE.  So, the first one I got was that IV Heparin, pretty standard stuff for a hospital patient who needs anti-coagulants.  I didn’t complain, but as soon as I began taking the medication, my thinking became fuzzy.  All I did was sleep in the hospital. I mean, wake up, take a sip of water, and go back to sleep.  I didn’t call anyone or communicate much with my family.  How embarrassing, too, when my mom came and when two girlfriends came, I couldn’t keep my eyes open while I spoke.  I felt drugged.  This is how drugged I was:  My mom brought me my new iPhone so that I could set it up and play with it, but I could not keep myself awake long enough to sustain the thought process involved in doing it.

Washing Windows

Thank goodness they found another aneurysm — a pseudoaneurysm — on my carotid artery (the hyperlink on psuedoanuerysm is extremely helpful; alert readers might be interested to note that it is written by one of the world’s experts, if not THE expert, in vascular surgery for VEDS people.  I respectfully refer to him here as Dr. Mean, who bestowed the expiration date on me — thus Day 24 today.). Well [shiver], typically I wouldn’t be so joyful about having yet another aneurysm.  But my mom reminded me that I knew about this one; I find it described in one of my first MRI reports in 2008 as a having beaded appearance, as though I were wearing a string of pearls up the side of my neck.  But that finding was considered insignificant.  This time, apparently, it’s large enough to be noticed. Not a big deal, in comparison with blood clots on the lungs, and the aneurysms on the Superior Mesenteric Artery — just under the aorta — and the ones on the Renal Arteries, but just another in the long list of potentially fatal illnesses I seem to be collecting.)

When I read Dr. Mean’s definition of pseudoaneurysm (and its treatments), just now, the seriousness of it made me want to vomit into my shoes.  Times like those are the tiny minutes that remind me I really am going to die early, and all those people whose Uncle Bobby Joe who had VEDS and lived to be 72 didn’t have the kinds of aneurysms I do.  The reason I don’t encounter older people with lots of aneurysms is because there aren’t any.  Don’t worry, though.  It’s been a long, long time since I have thought about this.  And I have to let it go right away.  It’s like being a window-washer on a high-rise.  I have to remember not to look down.

So back to the blood thinner.  They took me off of the IV Heparin prontissimo once they saw that problem on the carotid.  If you have a rupture on the carotid artery, well you can read here about what happens (scroll down to the middle of the page, where it talks about the “Carotid Cavernous Fistula.” UGH.)  Now, thanks in part to my brother’s lengthy negotiations with Dr. Dreamboat, I have to administer shots of blood thinner into my stomach every morning…for six months. That sounds awful, but it is extremely mild, the mildest of the anticoagulant choices.  Still,  I feel mush-brained, just different from before. This sort of side-effect is not listed in the flyer (or on sites like rxlist.com).  As usual, my response is “special.”

Lovenox, the medication I take, is no prize. I won’t even get into the discussion about the asthma symptoms I get from it.  I just use the nebulizer and shut my trap. (I’ll say more about that another day.  This is entirely too long right now.)

Attitude of Gratitude, because Gratitude is Fatitude

All I can do now is focus on doing my best.  My best on most days thus far our of the hospital has been making my bed.  I get there on about 3 out of 5 days. Mostly, I am working on getting out of bed at all.

Will it surprise you to know that all these things combined are causing me to feel despondent? I’m just OVER complications, difficulties, wrinkles in the plans, and being cheerful about all of it:  “No, really, everything is fine.”  No it fucking isn’t.  It infuriates me. That has to be part of the reason I am not so chipper-dipper cheerful anymore, what do you bet?  Please those of you who are cheer-oriented, I do NOT require a suburban cheerup effort.  I am simply explaining that some days I want to holler, “Enough is enough, for crying out loud,” and  “I hate you!!” to this illness that opens its fierce mouth and swallows up whole days when I feel horrible, and whole nights when I pace the floor and cry.  It used to be that I could become a little upset, but then the voice of reason inside me would eventually bring me back to cheerful stasis. Maybe my problem is that I don’t hear the constructive echo of a resourceful voice inside me anymore.  I mean, damn.  How many curves in the road can a girl take??

Those curves in the road are dangerous whether or not I am driving:  they send me down perilous mental highways with signs that burn their images into my brain.

You will never own a house.

(whereas your friend x has already own five, and she is hardly middle-aged).

Failure!  You will NEVER have children.

You can’t remember anything! You look like a fool!

Lights will go out any moment.  Permanently.

With those I confess the true dark nights of my soul.

Luckily, the light does still come back on when the sky is blue and the leaves are on fire with red and orange.

So on days like today, when I bound out of bed with something that looks like energy, I feel true gratitude.  I’m honestly disappointed as shit that I am not coasting into my 48th birthday on a victory lap, with a load of finished paintings and more advanced artistic ability, and a completed book drafts. I can remember happy feelings about even the smallest of accomplishments, though, until I get back to the doctors (who, I probably don’t need to point out, are the ones charged with keeping me alive, but aren’t they also charged with making me feel better?).   I am afraid because of the seriousness of this last dance with the disease. I  know this has been a serious bout, because of the way this week’s many doctor appointments played out.  I visited the pain specialist on Wednesday, and when they took my history, the nurses got that quiet, sad-eyed “You’re in serious trouble” face that you NEVER want to see.  Then, when the doctor came in, he did the same thing.  That’s just a bit unsettling.

My main gratitude extends to my mom, who knows that the only cure for my kind of howling fantods of angst involves vegan, gluten-free pumpkin cake, cookies, and pumpkin cheesecake.  Food is love.  That’s how I’m holding up.  Gratitude is Fatitude.

* The doctors that I can find that are truly great are gems; I find them with a great deal of research or by recommendations from trusted doctors or other clinicians.  The ones I see are located in the D.C./Northern Virginia/Maryland Suburbs.  Please comment on this posting if you would like me to share the name of one of the great doctors I go to, like Dr. Dreamboat (he is, unfortunately, married).  

 

Advertisements

Day 207. What to Say to Someone Who is Chronically Ill

 What to Say To Someone Who is Chronically or Gravely Ill

A few firsts: People who are sick, particularly the ones who aren’t going to get better, make many of us uncomfortable. Some visitors are squeamish because there’s an unconscious fear that even a genetic illness will be somehow contagious–they just prefer not to be around “sick energy.” It’s okay to get in touch with your own feelings about this sense.

Visitors are uncomfortable as well because those “hang in there because you’ll soon recover” kinds of comments we all have been taught to bring to the sick room simply are not appropriate with someone with a lengthy illness.

 Even if this is someone you have known for a long time, and maybe have had easy conversation in the past, perhaps suddenly you find yourself tongue-tied because she is different. There she lies in the bed, small and afraid. What the hell is there to talk about then? Or the co-worker who you shared an office with suddenly is in a full body cast. He may not be able to return to work and he’s only 45. What to say?

While things may seem different on the surface, remember that the essence of the person you know and love is still the same. Those changes and shakeups are massive for the person who is ill as well, so the biggest favor you can do is to be yourself.  If you are the kind of friend who is serious and always talks politics, then maybe that’s what you’ll want to do.  If you always tell each other jokes, well, then by all means, tell a few jokes (but try to leave ones about sick people out). Let your presence open a window and let a ray of sunshine in the room.

As you do it, know (or say) these things:

  1. There isn’t anything TO SAY. Know that there is nothing you can do. No one expects you to, either. If this really worries you, ask yourself who made you so important? It always cracks me up how a visitor can walk into situations where someone is sick, where he or she intends to help, yet ends up drawing the attention to him or herself by wailing: “Oh, I just don’t know what to say, Frances…..I just don’t know what to do….”.Okay, I have an idea for you, then: Stay home. If you can’t figure out how to act or talk, then stay home. Seriously. Figure out a sentence or something that you can contribute during your visit so you can stop that silly act. It’s not about YOU.There’s a lot of freedom in this hard truth. There is nothing you can do to make the person better. Leave that to the healthcare experts, unless you are one: one thing that becomes extremely tiring is when people second-guess the medical care the sick person is getting. Sometimes he will ask a good friend’s opinion, but otherwise, leave the suggestions alone.
  2. Walk a mile in my shoes. Think about what YOU would want to hear if you were the one with your foot in the air.It’s so hard to know what to say when you can’t feel the pain or make it go away, and you wish you could (you can tell your friend that you wish you could make the pain go away, if you mean it, but only so many times). Instead, imagine yourself in that chair with your foot up on a handful of pillows and feel the electric nerve pain (get way cranky from it, too). Now, what do you want to hear from people? I’ll bet you will think of something nice, straight from your heart.If you really did put yourself in that place, it may have occurred to you that in that cranky space, you don’t want to hear too much of anything. Tell a joke (maybe a short one). Do something you would normally do as friends: watch a movie, eat popcorn, gossip about other friends, play a video game, play blackjack. Whatever. It doesn’t need to be momentous. But when you don’t feel good, too much of anything is exhausting.
  3. Is this a good time?” (better yet, make very sure to schedule your visit). Sick people have trouble sometimes with drop-in visits. Sometimes they have trouble with scheduled ones, if their bodies aren’t cooperating. Make sure to ask if it’s a good time, and offer full forgiveness for rescheduling.
  4. How are you?” This is just fine, as long as the visitor says it in just the same way he would say it to another friend, and not in a worried tone with concerned eyes. Once again, walk a mile in my shoes. How would you like people to get all worried and say, “How are you, old chum?” forty-two times a day? But somebody coming in and saying, “Hey! How are you?” all cheerful might really cheer a person up. It gives the sick person permission either to talk about his illness if he needs to, or wants to, or just to gloss over it, if he don’t feel like it. Take the hint from which way he heads on that one. Got it?
  5. I understand if you don’t feel like talking about being sick.” Seriously. There’s no …but… after the “sick” in that sentence. Throw that sentence in any time the conversation gets personal. Please don’t “pump” for information. Your need to know is not more important than the comfort of the sick person, which is why you came in the first place.
  6. Hey, I brought cards (Yahtzee, Jenga, whatever) with me. Are you up for a game?” I love this. It takes all the pressure from the visitor (whew!) as well as from the sick person at the same time. Of course the sick person can always say, “Sorry, I am not up for that today.” But you still look really cool for having thought ahead and brought something fun to do. If you do end up playing, though, be prepared for play to go slowly, and be understanding about memory errors and the like. Whatever happens, sometimes the comfort of game time allows the sick person to open up and talk about what’s bothering them. Listening is all you can do. Remember, there are no solutions to what is happening.
  7. “I’ve got a coupon for a free car wash in my pocket. Can I take your car for a wash?” (You may have to stretch the truth on the existence of that coupon, but it will be for a good cause.) Getting things done for someone with a chronic illness like Rheumatoid Arthritis, Fibromyalgia, Traumatic Brain InjuryEhlers Danlos Syndrome (or any of the many chronic pain diseases) can mean that their day can last longer. I know that I am good for one event every day. My exhaustion tolerance allows me to handle driving, getting out of the car, dealing with whatever is there, and getting back in the car, one time. Then I’m finished for the day. When I do it twice in a day, I’m usually out for the next day or two. I am sure I speak for many when I explain my situation. So, by doing something that is relatively meaningless to an able-bodied person, it’s almost like creating a whole extra day in the week of the chronically ill person.
  8. Did you get an invitation to the x party? I’m going, and I’ll give you a ride there and back. I’d be happy to leave whenever you want to—in fact, I wasn’t planning to stay long at all.” I learned this from a friend of mine. If it weren’t for him, I wouldn’t get  to parties at all. Getting ready was challenge enough; driving downtown, finding a place to park, etc., etc. were challenges that seemed beyond my abilities. So when my friend, Jarrod called and offered to help, I started being more social. (Other friends followed suit.) Offer to help a friend get somewhere fun.
  9. “What’s your favorite movie/book/food, etc.?” It’s great to bring over some fun thing to eat or do, which you can leave with the person after you’re gone. I still have great movies and books people have brought me when I have been very sick and hospitalized. Take care to find out about food allergies common among the chronically ill. When I was in the hospital for five weeks, people were so kind and found out that I couldn’t have flowers in my room, so they sent Edible Arrangements of fruit that looks like flowers.  Yum!
  10. “This has been lots of fun, but I have got to run.” Huge mistake people make:  thinking sick person equals lonely person. When I come I am obliged to stay all afternooooooon. Oh, please don’t do that to a sick person. Here is the rule: Don’t stay too long. Don’t stay too long. Don’t stay too long. Have one conversation, maybe let the subject change once.  That’s enough, unless the person asks you to stay longer, or if the game is taking longer and she is enjoying herself.  You can ask, “How are you doing?  How is your energy level?”  But speaking for myself, it is very difficult to be honest—or to assess oneself properly.  A chronically ill person who is having a good time can easily miss the signs of exhaustion. After an hour or so, suggest that you can come back and finish the game another day.  You’re a great friend for coming to visit!

Day 210. What NOT to Say to a Chronic Illness Sufferer

I saw a great graphic on a fellow blogger’s site that should probably be required reading for just about everybody. This blogger borrowed it from chronic-illness.org, run by a cartoonist with multiple chronic illnesses.

I was happy to see a site about illness that wasn’t all about wallowing in misery (for an example, see my above paragraphs). This cartoonist has a number of funny sayings.

In large text, on one, for instance, we see “Coping,” and right afterward, the word in tiny font “sorta.”  Hilarious. I love things that tell the truth like that. Or how about “My disabling chronic condition is more real than your imaginary medical expertise.” Booya!

But I really appreciated “Things NOT to Say to Someone with a Disabling Chronic Condition.”  Maybe you have to be sick to appreciate this, but trust me; it’s funny.

My mother suggested that I preface this explication with a disclaimer.  She wants me to convey the understanding that people say things like this out of love, and because they don’t know what else to say.  Point taken.  Still.  A few of them should be without absolution.

But you don’t look sick.  How can I possibly respond to such an accusation? (Sometimes the idea is couched in “You look great,” dripping in irony, as in, “There is not a thing wrong with you, so why don’t you just cut the crap and deal with life like everyone else?”)  My current favorite is to launch into a discourse on how having a genetic defect in your collagen actually causes you to look young (it does) because the wrinkles mainly stretch out.  (Bummer that you don’t live long enough to laugh at all your elderly looking friends, but still….).

Everybody gets tired.  I get tired….of your stating truisms.

You’re just having a bad day.  Well, hell.  I have bad days a lot more than I care to count.  I particularly enjoy them in the middle of the night, when it feels like my hip joints are breaking, so I am afraid to roll over, yet have to roll over, or I’m afraid they won’t move when I wake up.  Just like you, I’m sure.

It must be nice not going to work.  I have to admit that I like being able to write, read, and paint.  But you have to understand that this is the booby prize for me.  I studied so hard to get my Ph.D. to be a college professor because I loved what I did.  It was my life, and I thought I would do it forever.  It breaks my heart not to do it still….but I dissociate myself from that pain, so that I can carry on and be a happy person.  Writing and reading both are very difficult for me anymore, painfully slow.  I am aware that its a gift that I can do them at all, and that I can learn to paint.  But it’s not nice.  

I wish I had time to take a nap.  Oh really?  I wish I could lie down and not fall asleep.  I wish I did not have perpetual exhaustion.  That’s such a self-centered thing to say to a sick person.

…If you’d get out more.  More than what?  The more I get out, the sicker I get.  The one thing a smart  person with chronic illness learns is her daily capabilities.  I’m good for one main thing daily.  Then it’s a nap, or I am sick all night and for several days beyond.  My last three experiences with pushing my tolerance have landed me in the hospital, which is its own fresh hell.

You’re just getting older.  You are too.  How do you feel?  Do you have all my symptoms?

If you’d get more exercise….  Well, if you read anything I wrote about physical therapy, hopefully you know what I would say to you about this.  Normal people make progress in six weeks of physical therapy. But you aren’t talking to a normal person.

It can’t be that bad.  Um.  For, please.   Are they _____-ing kidding?  Anyone who says this, I wish my disease on.  Did I just say that in public?  Holy smokes.  That is a pretty harsh judgment.  None of you would ever have said that anyway, right?

You’re just depressed.  Oh my.  I just had to erase a line of invective.  I have heard this one from people as illustrious as my esteemed psychiatrist, my mom, and Dr. Mean (of 365 Days fame).  It feels like the ultimate sock in the gut to hear someone say, effectively, “You’re crazy.”  It took an explosion in my leg to convince others that I wasn’t crying wolf.  By the way, I had plenty of symptoms of depression, so they thought they were doing the right thing. And yes, I have been depressed, but that was the result, not the cause of my illness. It seems to me that one keenly logical response to what I have been through might have been to become depressed.  End of story.

There are people worse off than you. I am guilty of harping on this one to myself, or of its ancillary, “It could be worse.”  Truisms.  But I’m okay with them.

You’ll just have to tough it out.  This one makes me see red–in the tradition of the cartoon character bull’s eyes turning red and exploding in a rain of fury.  Maybe it has something to do with its origins for me:  On my first Girl Scout camping trip, I realized I was going to have to unroll my sleeping bag on a dirty floor and sleep with a bunch of biatches in the same cabin. Then I fell into the Chesapeake Bay.

That was the proverbial straw:  I ordered the troop leader call home because I was not staying (can you imagine what a bundle of fun I was as a child?). Guess what my dad said? “You’ll just have to tough it out.” I heard that a few other times when it would’ve meant the world to have help and support instead. So that sentence just means all kinds of fierce madness to me. Why would anyone say it to someone who is sick?

You just need a more positive attitude.  HAH!  Well, hearing this from someone who isn’t sick makes me laugh, certainly!

This too shall pass.  They can’t be serious when they say this.  It is not going to pass, unless they mean my passing on.  Hah!  Now I’m really laughing!

Well, so I thought that was worth a few laughs–maybe enough laughs to get me through sleep tonight and another session of PT tomorrow.  It may be a great one, right (I say, working my positive attitude)?

Day 215. My Secret Pain Self

You may have noticed that I haven’t been posting quite as much of late.  That has been for two concurrent reasons.  I have been in the middle of writing about how fantastic my phsyical therapist is–because he is really great. Then at the same time, I have been in an existential crisis about how miserable I am because I am in pain and horribly fatigued as a result of physical therapy.

Over the weekend, I was so miserable; I had to miss doing two things I really wanted to do, and I barely un-beached myself from the couch long enough to eat another caramel rice-cake with tofutti cream cheese, honey, and cinammon (my absolute favorite GF, Dairy-free treat…but more than three of those a day will put a girl into two size 22 mu-mus, sewn together, mighty quick).

But I digress, as usual.

I went to PT on Monday and told Mike about my misery.  He was very concerned and jumped right into diagnostic mode.  At the same time, though, he reminded me that I had come in happily last week and announced that my shoulders had never been so relaxed in recent memory and that I thought we were making real progress with this body work.  I do have a vague memory of saying that. Here’s the problem:  When I am in pain, I can only think: pain,pain, pain, pain.  When the pain is over, I can’t remember or describe it clearly (without referring to journals).  Seriously.  He asked me to explain what happened over the weekend that was so bad, and I was hard pressed to elaborate.  It’s embarrassing because it sounds like I am making it up.

I think I have a dissociative response to my pain, to some extent.  On a large scale, people who have a dissociative response are really in trouble, because they are disconnecting from themselves or the world; for example, dissociative identity disorder is the present name for what in the past was known as multiple personality disorder. But a more adaptive form of dissociation frequently occurs to people in something as mundane as, say, a car accident; dissociation from the fright of the situation is gives the person a safe place to stash the self, so people often report having watched the accident occur as though they were watching it on TV. Disconnecting from the whole scene to process the deep and difficult feelings, including pain, may be the safest way for some people–like those of us with very intense feelings–to do it.

Maybe I disconnected one tiny bit of myself that day my parents walked me down the hall of my apartment building and I went to the hospital with an exploded leg aneurysm.  Without any doubt I had the sense of standing above the stretcher where I was lying and watching the radiologist tell me, “Yup!  See!  This is an aneurysm right here.”  And I looked at the angiogram with great interest, as though it belonged to that imaginary patient we always see on television. That dissociated piece of myself has undoubtedly remained….well…split.  And it has a tough time articulating much of anything, particularly pain.  I am sure that is why, on the rotten days like today and yesterday, I tend just to fall asleep.  When that dissociated part of me takes over, I’m not available for talking or thinking much, so the porch light’s off.  Nobody’s home.

There’s going to have to be a whole chapter on physical therapy in my book.  It’s complicated.