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).  

 

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16 thoughts on “Day 24. How Are You?

  1. I love you too Heidi and I have immense admiration for your writing. In other words, I’m sending you vegan, gluten-free pumpkin hugs right now!

  2. hey, gorgeous, you are so smart and funny and real. not everyone can put all of those together in one tanned bod. you already know that’s a way cooler achievement than five houses.

    and, i’m going to be tucking your “window-washer on a high rise” line into my back pocket, if that’s ok with you…

    and, as mr. dante puts it: ““The wisest are the most annoyed at the loss of time.”

    love and hugs…

  3. I don’t know if love cuts it when the prospects are somber. But it is there – and you do have a long fan club. And perhaps there’s the rub: what we want is love and yet it may not be enough, because there is no time, or it goes away too fast.

    Audre Lorde said it best in A Litany for Survival

    “…when we are alone we are afraid
    love will never return
    and when we speak we are afraid
    our words will not be heard
    nor welcomed
    but when we are silent
    we are still afraid.

    So it is better to speak
    remembering
    we were never meant to survive.”

    ***

    Also:
    When I ask you “how are you?” feel free to answer in any of the following ways:
    – Fuck you, you idiot. You don’t know.
    – Fine.
    – Do you really want to know? (and then don’t tell me).
    – Do you really want to know? (and then do tell me).
    – Couldn’t be better (choose the level of sarcasm appropriate to the occasion).
    – Any other alternative that crosses your mind.

    The corollary to the previous paragraph: you’re stuck with me – and with the lot of us. Love.

  4. Hi Heidi, You are going through so much and I wish I could help. I can’t even bake anything worth eating!:) I will definitely send you hugs and prayers.

    Certainly am glad you are sharing what is happening with you. Truth hurts and it’s scary. It’s okay to feel that way. Who wouldn’t given all the serious medical situations you are encountering.

    Because you are still able to breathe, and speak, it’s expected you are “FINE”. This is not so. I’m glad you conveyed the seriousness of your situation.

    I do know the expected answer is “FINE”! My siblings and I always answer FINE regardless even when in critical condition. That response to FINE nearly cost a sibling’s life, and in the end he died. I usually wouldn’t print this so please feel free to delete this, but I know you are feeling like HELL. There is no reason to minimize what you are going through.

    FINE stands for Fucked-up, Insecure, Neurotic, and Emotionally unstable. So, FINE can fit the scenario when dealing with devastating medical issues. It’s just who’s definition of “fine” or “FINE”?

    How does one find peace when the body is in turmoil? Traditional medicine doesn’t have all the answers or cures. The real physician and healer is God. Most all the health issues you endure are unusual, with unusual responses. What’s normal for others, is not normal for you. Expect the unexpected. Miracles are not the “norm”, but miracles do happen.

    I hope your body will heal and your mind be at peace. I also know you are wondering how much more can you tolerate? We are more resilient when we haven’t mistreated our bodies in the healthy state. You haven’t mistreated your body. Your mind is preoccupied by learning and educating others. Through these difficult times, miracles do happen and research can’t prove or disprove why things happen. They just happen.

    May you know I sincerely understand. Power of prayer helps heal, or makes the final journey easier. Whatever happens, we make the world a better place by helping others understand the journey one has traveled and pray others don’t need to travel the journey alone and without help. Your words are genuine and powerful.

    We want others to have support and understanding. Understanding comes when one endures the same or similar situations. But, there is nothing stronger than a mother’s intuition. How is your mom dealing with this devastating illness attacking her daughter? What is she thinking? Mom’s comfort, hug, and love their children regardless of age. I’m happy your mom can be there for you.

    Please keep me posted or have someone from the family email me at edithflickinger@yahoo.com. I will keep you in prayer. You don’t need to suffer in silence, so I’m happy you put into words what is truly happening and how you feel. Feeling like that is incomprehensible, but it paints a visual to help understand what you are going through.

    Are you able to breathe without extreme effort? Is breathing effortless simply because you aren’t exerting yourself, because you can’t exert yourself? Are the clots dissolving because of the Heparin? Is the Heparin causing other bleeding tendencies? It’s a ripple effect.

    Sleep and rest is a good thing when your body is trying to heal. I’m sure you don’t have much choice.

    Do know I am sincere and concerned. I can order you a pumpkin custard waffle cone if you wish?

    Thanks for the updated post. God Bless and Keep You Always! Take care and stay safe, Edie

    • Thanks for being such a good friend (and Nurse!), Edie. Sorry for not responding for so long. I just have not been very good at responding to people of late.

      I got much better at breathing when (after almost 2 weeks) my insurance company approved the Xopenex (nebulizer) that they at first denied. Can you imagine!!?

      You asked a good question about breathing. I was able to breathe effortlessly because I wasn’t exerting myself. But when I started walking around, doing laundry, folding clothes, stuff like that, I started wheezing, etc. Then I got (sometimes get) really tired from not breathing as well as normally. I can do nebulized meds up to 4x/ day….but who has time or wants to do that?? I do my best to do it twice (oh, but medicare will pay enough for bout once a day. SO SCARY ….I just got medicare, and I am frightened that they are making healthcare decisions for me!)

      Anyway, the doctor thinks that the Heparin is working and that the PEs are on their way out. Rather than needing to see me 2x/week, he set the next f/u appointment to December. Good news, I think. So thanks for your prayers. They are helping!

      I love your offer for a pumpkin custard waffle cone. That sounds DEEELISH. If only I were not allergic to the custard and the cone, I would take you up on it!. darn.

      My favorite part of your email is the part about “I’m doing FINE.” That could not be funnier–or more apt. Thanks so much for your words of comfort. They are so meaningful, particularly when I know you are your own private FINE, tangling with your situation.

      Much love,
      Heidi

  5. Sometimes I think I live in my little bubble world, unaware you are lying in the hospital with another IV drip and then ask…HEY Girl! Whatcha doing?

    Think of those feel good questions the same way as a clerk in the store who asks “did you find everything you needed today”. Cause even if you didn’t you aren’t going to say…”well, I was looking for some of that new KY I saw advertised on TV, y’all have that?” Believe me, they want you to say “yes” and move on. So your response can be plain ‘ol fine, or a string of 4 letter words. But we really do want to know how you are and that’s one of the reasons for your blog and our subscription to it. Not only that, your descriptive writing paints as fine a picture as an artist. Now….if I can just remember to not use that chipper phrase.

    How about…Love ya!…thinking of you! Because I am.

  6. The other thing that bears saying is this: it really pisses me off that you’re going through this. That’s probably not useful in any way, but it’s my gut reaction – anger at the randomness of it. I wish I had something more useful to offer.

  7. Hi Heidi! It has been a while…but yes, from all the oceans and miles that separate our online friendship, I love you, my dear friend and I will always be here praying for your happiness and contentment. I cannot imagine what you are going through right now but I can imagine what my mom went through by your words. I am speechless, yes. But in this speechlessness I am at awe with your openness in sharing with us how you are. I am grateful. Very much. Of your friendship. Thank you :)

  8. One other thing, Heidi. You’re a great teacher. You’re the kind of teacher that people talk about years later, about whom people say, It was in her class that I first loved a poem. Your passion, your energy, your joy is still out there, affecting your students, and it always will be.

    That’s not enough, I know. It’s not a house, or a baby, or a long life. And your life’s been so unfair lately that it may not seem worth mentioning. But it’s a real accomplishment and you did it.

    I want you to have all the rest too, though. Good luck, good luck, good luck.

    • Jennie–this is amazing. Thank you so much. I have to print it out and put it on my mirror or something. It’s vitally important, and it means so much that you would tell me…I didn’t know….Thanks. xxoxo

  9. I’m echoing much of what other people are saying in their comments. Love. Best wishes (in the non-obnoxious way). More love. Your writing is so damn good. It is one of the things that inspires me with my own writing. I think to myself, “Oh quit with this “I don’t feel like working on the novel today” business Karina. Just sit down and write as good as Heidi does already!” And then I attempt to and I send out a silent “thank you” to you somewhere on the East Coast and hope it reaches you.

  10. Pingback: Day 13. Trick or Treat? I’ll Take the Treat, Thanks. | heidiwriting

  11. We are just starting this journey. I would love to hear from you on which doctors are worth our time. After multiple visits with unhelpful/hurtful ones, we are ready to build a good team. Thanks for your help.

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