The Bottom of My IV Stand Looks Exactly Like an Asterisk

The Bottom of My IV Stand Looks Exactly Like an Asterisk

By Katelyn O’Leary

Katelyn OLeary dress

Katelyn O’Leary

This is the only thing I can think of as I slowly walk back to my bed, my nurse gently guiding me so I don’t fall. I keep thinking of the asterisk, despite the buzzing of the ketamine and the dopey effects it has on my brain. The asterisk symbolizes the current state of my life – what am I doing and where am I going? Will I ever be able to carve out a life for myself with my condition? I’m waiting for the asterisk to guide me to the bottom of the page, where I can find out for myself.

This summer has been pretty terrible. Sometimes you just have to say it and not sugar coat your feelings. Having CRPS makes every obstacle, social event, and family gathering pretty terrible. When you live far from your family, it’s hard dealing with this condition. And when a family member discredits your condition – it hurts more than the CRPS. So it was with a pulverized heart and a serious case of the blues that I met up with my pain management team at USC. As of this June, they want to do 6 more months of ketamine infusions and added more medications to my daily regimen. My doctors insisted I stay positive and continue to fight this.

But how do I fight? All of my defenses, my armor really, is gone. Months of exhaustive treatments, medications, heart issues, and just terrible pain has eroded my resolve. I am fully exposed to the world and terrified. Terrified of people running into my leg at the movies, of kids bumping into me as they pass run through the park. Anxiously preparing for social gatherings (do I have my meds? A bag for ice? My handicap placard? My crutch?) and worrying about how I appear. The old “me” loved meeting new people, making new friends, enjoying the culture or the scene.

But on the other hand, I have a network of friends in Los Angeles, whose love and support has gotten me through the darkest days. Friends who are so wonderful, every day I am grateful and every day I am scared of being a burden to them. I’ve had received incredible letters, care packages, books, Facebook messages, and just so much love shoved and showered my way that it astounds me. My friends and family have not given up on me and their support has not wavered.

Right now I feel like a boxer face down on the mat, trying to get back up and keep fighting. I’m slowly rising. I’m listening to the support and the love and I’m trying to get back up. In my mind I can hazily see the person I used to be. But now I have to find a way to focus only on the present. To focus on the future I am desperate to carve out for myself.

*It’s not over yet.

Katelyn O’Leary suffers from CRPS. She lives in Los Angeles, works in the entertainment industry. She is a frequent contributor to the National Pain Report.

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Authored by: Katelyn O’Leary

There are 20 comments for this article
  1. Johnna Stahl at 8:25 pm

    Yes, Katie I saw the Globe article, even though it’s hard to find articles that advocate for pain patients. And if you were to Google my name, you could find my blog (All Things Chronic) on WordPress (painkills2.wordpress.com). (Pay no attention to my Facebook page, because I rarely use it.)

    While our medical conditions shouldn’t define us, I consider intractable pain to be as much a part of me as being a woman. How much you want to talk about that part of you — even to your kids — is up to you. But It’s probably better if they understand that the limitations and restrictions caused by your pain have nothing to do with them.

  2. Katie Olmstead at 10:55 am

    Johnna, what is your blog address? While I have never hidden my chronic pain if it has come up, it is still somewhat hidden. I have to work out how much to say, and when. A biggie for me is my children. They are adults now but while they were teenagers, I hid all I possibly could. Or maybe they would say I didn’t, that I talked about it all the time. I don’t know. I still don’t know how to talk to them about this defining part of my life. Did you see the Globe article 2 weeks ago? I can post a link or you can google my name.
    I would love to share in your fantasy of accessible chocolate and marijuana and excellent pain management for all. I am lucky to have a dispensary in my town. Maybe I said this before? I realize that part of why I like going there is that there is no hiding. There is a profound comfort.

  3. Johnna Stahl at 12:13 am

    Katie, I’m happy that I was invited to your coming out party. About two years ago, I started a blog, which was my coming out party. It’s scary at first, but you’ll get used to it. And it’s so freeing. Now you get to be who you are without any masks or apologies. I know I’ve felt lighter since coming out — as if I’ve lost at least 10 pounds.

    Salome, thank you for your kindness, although I’m not sure how much help words can be. I have a fantasy about being married to Warren Buffet and having access to an unlimited amount of money and power, which I use to open pain clinics in every city. Clinics where all pain patients will be welcomed, always treated with respect, and never abandoned.

    I invite one and all to join me in my fantasy, imagining a better world for those who endure endless suffering. A world where chocolate and cannabis are free and available to all. 🙂

  4. Katie Olmstead at 5:05 pm

    Johnna, I read every word of the Mother Jones article. Thank you for that. That was an unexpected turn at the end, the writer becoming the subject. I do hope more states legalize this option. I know it is fraught, but do watch that documentary about Oregon. It is inspiring. One thing you said reminds me of this complexity, about needing to be 6 months from death. What about people who aren’t terminally ill but they are in pain without hope for recovery, mentally fully capable of knowing this, and wanting to die? Which is where this whole discussion started, isn’t it? I have never been uncomfortable with the idea of suicide. Not sure why. My mother and I had talked about this a lot as she was getting older and older. She wanted my blessing should she choose to end her life. It’s her life, I had no problem with that. She did die in April at 97. Honestly, I don’t know if she took pills or just died in her sleep. It doesn’t matter to me. She was ready to die and did.
    Salome, in contra dancing, we do a move called “balance and swing.” “Balance and swing your partner.” It’s one of my favorite metaphors. Balance=being grounded and clear. Swing=be joyful and fly. Both.
    What matters is listening to each other’s stories. Without judging. Not comparing. Not trying to fix someone. And for me, my latest challenging is “not hiding.” The Boston Globe article was my coming out party. Now I have to live that.

  5. Salome Cerisier at 4:29 am

    Thank you Katie (for “cutting in”) and Johnna (for posting the article link) – to both of you for simply being here with kindness and understanding. Your words have also been an immense help to me.

  6. Johnna Stahl at 5:35 pm

    Thanks for your response, Katie. I’ve been following the right-to-die battle, which is described in this great article: http://m.motherjones.com/politics/2016/01/assisted-suicide-legalization-california-kevin-drum

    I live in New Mexico. New Mexicans passed a right-to-die law, but the state recently won on appeal to the State Supreme Court. So, too bad, so sad for us. Thing is, these laws will not help me anyway — until two doctors agree that I have 6 months to live. (As if doctors have never been wrong.) I can’t wait for the law to give me rights that I should already have, including how to treat my pain and how and when to die. My life, my pain, my decisions.

  7. Katie Olmstead at 5:13 pm

    Thank you, Johnna, for reaching out. I don’t think anyone here is judging anyone, which is refreshing. Like Salome, I do think I understand the desire to break the pain cycle, permanently. Death with dignity… Not easily come by in this society. I recommend an amazing and respectful, even inspiring movie about “death with dignity,” as it can be done in Oregon and other states. The movie is called “How to Die in Oregon.” At least in Mass., it is in our library system.
    Yes, Salome, I am apt to use dance metaphors. I also use dance to get enough of an endorphin kick to have a couple of hours without pain. Before I get back to more pain. It’s worth it to me.
    What I hope for everyone is good pain management. It takes the edge off of the desperation. And people who will listen.

  8. Johnna Stahl at 10:28 pm

    Dear Maria: I know exactly how you feel. Exactly. If you want to talk, please email me at painkills2@aol.com. I’m here to listen, not judge. And I’m reaching out because I care.

  9. Deborah at 5:07 pm

    National Pain Report The #1 online independent news source for people in pain and the families and professionals that care about them.
    Making changes together and understanding debilitating pain. My understanding of this forum.
    Salome, your concept does not offend me, it confuses me.
    Certainly, you have the right to voice your opinions. You are somebody!! Your most recent comments are noted, re: RTD..
    Currently under consideration,
    Fourteenth Amendment Right. ..refers to right to die. I am not aware of any ” Amendment” or right, allowing chronic pain patient’s to have necessary medical treatment or medication to assist or improve “quality of life” to live.
    This is my opinion and is not necessarily based on fact or knowledge.

  10. Salome Cerisier at 3:57 am

    Deborah, you may be referring to me in a portion of your comment regarding bringing up right to die issues. My apologies if this concept offends anyone, but I am of the opinion that this forum affords us the opportunity to freely express our views, in the company of like-minded individuals, knowing that for the most part they will be accepted, or at least thoughtfully considered.

    I stand to gain nothing by voicing my opinion on the matter – I’m a nobody. I may very well be in the minority, and am certainly not saying anyone should commit suicide, but I do believe it is a highly personal choice that should be a viable option based on what is currently happening. I have long equated it with how we will mercifully put our pets down. When quality of life is no longer existent and/or seemingly unachievable (and my desire for that is in no way in opposition; I’m not confusing the two), I do not think such a decision should have to be so potentially scary, lonely, and deemed inherently wrong.

    I also truly believe that only an individual knows how much they are willing to take, and have to ask, is a life really worth living once it has become nothing but incessant suffering with no end in sight? Yes, we here care, we understand more than others do, but oftentimes that is cold comfort. Things are not getting better, not soon. Suicide is a complicated subject to be sure. It makes a brief appearance in many responses under a wide variety of topics, and, as stated, is an “elephant in the room,” (Interesting you used the phrase “dancing around,” Katie, based on your background!) well worthy of discussion.

  11. Deborah at 8:07 pm

    I am feeling compelled to respond to recent articles and comments from NPR.
    Katelin, thank you for sharing your story. Well done!! Sorry for your pain. Happy you have such a great support team. You are blessed. It’s not over yet..
    To maria, It truly saddens me to read about your despair and distress..first, let me express my sincere concern for you and others who are suffering with pain. Thank you NPR!!…..for this forum, allowing one hope and faith.. Thinking that we might work towards improving the understanding, quality of life and care (lack of) for chronic pain sufferers.

    I, understand all too well..the suffering of pain. I was a passsenger in a motor vehicle accident. I sustained a Burst Fracture of my Vertebrae T11-L5..with Spinal Cord Damage.. Head trauma with Massive contusion’s and hemorrhage of my orbital’s. Fractured ribs. Punctured lung, chest wall and abdominal injuries. Currently, I do not have a DR to oversee my medical issues Sadly, my PCP Doctor lost his battle with cancer. He was the best!! Dr O gave me many year’s of excellent care.We had a “GREAT” doctor and patient relationship. My pain and quality of life was being managed up until his death. Now, I am fighting to find a doctor to provide adequate medical treatment for my debilitating condition.
    Furthermore, after viewing NPR daily, it concerns me that one might use this platform for financial or notoriety gain.
    Example: individuals that will want to promote their books on chronic pain issues for profit and without a broad spectrum of actual pain issues. One who might want to bring up end of life choices…. Confusing one’s will to live without pain…as right to die issue’s, opposed to wanting (QOL)..
    Therapist or doctor’s without genuine, sincere concern for all issues of chronic pain..
    In advance, I apologize if I am misinterpreting any post..or articles.. We must stand firm on issues of chronic pain, to achieve positive outcomes.

  12. Katie Olmstead at 5:03 pm

    I want to address the elephant in the room. Maria, are you saying that your pain levels have improved or are you intending to commit suicide? We are dancing around this question and that does a disservice to you. Even as strangers, we are reaching out to you and wanting you to stick around and keep fighting. Fighting for better pain management, in whatever form that takes. Ten years is a long, long time. We are not alone in this, even when people around us might not understand. There are certainly those who do.
    I hope that Inspire will repost the Boston Globe article but anyone can look it up from this last Sunday. It was a big splash of a front page article: Living in a box: stories of chronic pain.
    Maria, let us know how we can help you.

  13. Pain Patient at 4:20 pm

    I’ve been in pain for over 20 years. I have learned that friends are more supportive than family. Friends with chronic pain are the most supportive. Sometimes the internet is your only friend. But one thing that has gotten me through most of the the best is my pain psychologist. She has made me get up and enjoy the life that I have now, and I feel actually guilty if I stay at home for even one day. Life is worth living. Live. The more active you are, the less you think about your pain. I know, I lived 15 years in a house without going out. Good luck to you!

  14. Dian M. Lovejoy at 2:32 pm

    Yatahii, gf hold on to the lugnuts time for an overhaul, u have so many brothers and sisters out here, we all need that love an support from family an friends so very desperately but…..sadly some do not get it, so glad u see it an treasure it., be safe an blessed.🐙❤🌹😊

  15. Salome Cerisier at 1:38 pm

    To Maria, I apologize if I am completely misinterpreting your post, but if you are saying what I think you are, and you happen to check back for responses, please know, if it means anything, that I more than understand, believe that you are very brave, and that all will be well. Love and blessings. (Maybe THIS is what we should start fighting for – assistance with such a decision, the ability to go gracefully and to be assured of a successful outcome.)

  16. C. M. at 12:50 pm

    Hi Katelyn,
    I know exactly what you mean on all aspects.
    I am so scared also of someone bumping into my foot/leg as well. I use a crutch but as we all know it’s used on the opposite side. Sometimes I put it on the same side as my CRPS foot/leg just to help protect it when I’m out, which is rare. I just don’t have the gumption to go out much, or the transportation to do so.
    It’s a different road for all of us, even with the same affliction. I have not tried Ketamine & frankly I am scared to try it. I have heard good things & hope it does you good. Anything that gives some relief from this pain is a good thing.
    I am up for 30-40 hours at a time, then crash from exhaustion. It’s very frustrating. I don’t know why but I just can’t sleep sometimes no matter how tired I am. The pain is part of what keeps me awake but I don’t think it is the only thing.
    There are so many complexities with CRPS/RSD, hence the name change to include Complex as the first descriptor I presume.
    I have lost many friends but do not regret it. Some people are just too demanding &/or just don’t get it.
    Please don’t ever give up. We have to fight & keep CRPS in the light so more & more people are aware of it.
    Bob Schubring is correct too, every word.
    I also want to read the Boston Globe article featuring Katie Olmstead.
    I hope though that you are using ice for your drinks & not to apply anywhere on your body. Ice is extremely damaging to someone with CRPS, on any part of the body but especially the affected body part. Here is a link about it below.
    Please take this cyber hug & stay as positive as possible. We all have our down days, sometimes even weeks, just don’t stay there & know you are far from alone.
    http://www.rsdhope.org/ice-and-crps.html

  17. Bob Schubring at 9:56 am

    Thank you for writing, Katelyn.

    Yes.

    Some people think you only exist, to satisfy them. When you are too bloody sore/stressed/exhausted to stop feeling bad and start sleeping, invariably one of the fools wants you to drag your carcass out of bed and solve some problem for him, that he’s perfectly capable of solving for himself.

    Hiding out from such fools, has complicated what’s left of your social life. The people who love you for being you…the ones you call Friends…will actually try to learn not to make you hurt. The fools who invent ways to come between you, just don’t grasp the concept.

    Fools go through life with a sense of entitlement.

    They think it’s their right, to be waited on and served by others.

    When we’re too sick to play along with the fools’ game, they get angry and bossy and insult us. Then they make up stupid crazy stories about why we’re telling them that we’re in too much pain to move…which stupid crazy stories explore every imaginable reason, short of the plain truth that we keep patiently repeating.

    The truly dangerous problem, is these damned fools vote in elections.

    A lot of people in Washington who ought to know better, keep trying to tax or prohibit us from using pain medication to help ourselves rest and regain strength. Even though we out-number the fools, those politicians crave the fools’ votes.

    We’re going to have to vote some prominent fools out of elective office, to fix that problem.

  18. Tim at 9:47 am

    People with chronic pain in a great deal ocases do NOT necessarily look like this id their last day on earth. If you are a person that does not want to be pitied, you hide the fact tha you are in excruciating pain from those that d not know. Pain not only wers on your psyche, but it fatigues you or at least in my case it does. I has two doctor reccommended surgeries and the physicians stated that I would lose approximately 70 percent of my pain. That sounded pretty goo but what I did not realize is that being in pain ALL the time even if the level was lowered 70 percent would still be a horrible way to feel. By theway my pain was not lowered 70 percent, if anything it is the same only in a different place now. I understand that about one thrd of the nations people (USA) live in chronic pain. I wish there was a way for people who are not in chronic pain could understand how difficult it makes life. Even physicians are not well educated on lifein chronic pain.For me the pain level varies on a daily basis with some days I can function fairly well with most I do not have the will to get out of bed. Katelyn, I humbly am in harmony with you and I hope your life gets better and better. I feel some days it would be better or at least easier to just give up but that is not the right way either. I am in harmony with all those that are in chronic pain no matter how or why the cause. I personally handle my pain as spiritually as I can and it does help. May the master of the universe hear all in pain.

  19. Katie Olmstead at 6:55 am

    Katelyn, I hear you. Invisible debilitating health issues, esp when someone like you (and like me) look perfectly healthy and “normal,” are that much harder. Did you see the post in Sunday’s Boston Globe about living with chronic pain? It focused on 3 people. I am one of them. I have CRPS. I am now asking people, “Do you see me any differently?” My CRPS is now much milder than yours, and I am so sorry for your suffering, but what is interesting to me is how we handle this. People call me brave, which doesn’t mean anything to me. They say they admire my positive attitude, but do they really think I maintain that all the time? In the thick of pain and fatigue, life is very dark. Sure, I have times of great brightness but not when I can’t see my way to find up.
    It’s not over yet.

  20. Maria at 5:31 am

    I want to thank all of you kind people for fighting the good fight. And I have been with you only this past year while suffering personally for nearly 10 years with my own personal battle with pain and (lack of) proper pain management. I just want someone out there to know that I AM DONE. Good luck with the battle, it is a cause worth fighting for. Keep fighting folks. And thank you for all that you do.