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Revisiting Dealing with Diagnosis

Before anything else leaves my lips, I would like to offer a big, magnificent congratulations to all the runners who participated in and finished the Boston Marathon yesterday. I also want to say thank you to all of hundreds of thousands of spectators who went out and showed their support for the runners and the city of Boston. There are a great many things that are wrong in this society, but one of the very best aspects of our country is our ability to rally around one another.

In the next few weeks, I want to delve back into a subject that is very near and dear to my heart: coping with chronic illness. As a reintroduction to the subject, I wanted to link back to a post that I wrote rather early on in my blogging career. DiagnosisI am very interested to hear what new readers to Suzlyfe might have to contribute to the conversation. My longtime friends, please reconsider the content and let me know what you take away from it now, in light of current developments in you life.


Dealing with Diagnosis

Being able to put a name to what is wrong is both a blessing and a curse. On the one hand, not knowing allows for a margin of hope to continue to exist that it might just be nothing after all. The alternative, knowing, hand can b*tch slap us into reality, but the great aspect of having a name for what is likely wrong means that a course of action specific to that diagnosis can be developed to begin aggressive and pointed treatment.

In short, it’s like finding out whether or not your crush actually likes you–if he/she does, you can start to move things along. If he/she doesn’t you can come to terms with that fact and “cut bait” or, like many, ignore that and stubbornly continue trying to fit a square peg into a round hole. I am not saying that you should just give up in cases like this, you should always fight for what you want in life, but one should always have a healthy does of reality.

slap a bitch

With the myriad of health issues that I can attach to my body, you better believe that I have quite a bit of experience with diagnosis. Undoubtedly, the diagnoses revolving around my Crohn’s and Clinical Depression/Anxiety have had the greatest impact on the course of my life and my mentality.

When I was first diagnosed with Crohn’s (the depression/anxiety shortly followed), I had endured a summer of discomfort, sickness, and disappointments. Finally, a month (to the day) after Sept 11, I got my diagnosis, and we began to treat my illness (another disclaimer: I am not intimating that all diagnoses are 100% correct). And yet my treatment did not mean that we instantly settled upon a way to “fix” me; it was another 6 months of illness, surgery, pain, missed opportunities, and, at one point, 30 pills a day, to arrive at the conclusion of Remicade. But having a name to put to this “elephant in my body the room” meant that I could go about my life with a sort of comfort that comes with knowing that we had some direction.

no direction

So that takes care of my physically, but what course of treatment did I choose for my mentality?

fist-pump-baby

First, I made the decision then and there, in the doctor’s office, that I would not be a victim. Making this choice a priority in my approach made all the difference. I will say that I might have been a bit too staunch in my anti-victim-ness, even to the point that I would not cry. I would not necessarily recommend the no cry approach in the black and white sense–I can tell you that catharsis and the ability to release emotion and pent up energy is one of the most mentally and emotionally beneficial psychological tactics one can utilize. Even though I maintained my “stiff upper lip,” I did start to journal some, I began yoga, I went to therapy, and most importantly, I went to the farm and saw my horses.

Find something to motivate you and help you look to the future. So many days, I struggled to get out of bed in the morning. In my house, the deal had always been that if you were too sick to go to school, you were too sick to take part in your afternoon activities. For me, PM=Barn and time with my mom. On the days that I struggled mentally or physically to get up (obviously, this only applies to days when I wasn’t running a fever, etc. If going to school would have made me sicker, the option was off the table), I would tell myself, If you can get up and go to school even for a half day, you can go to the barn and see Jerry, Brian, and Penny (my horses). This made a huge difference.  You should have something for which to live. Some days, I couldn’t even ride, but that didn’t mean that I didn’t benefit from my Equine Therapy.

Broken foot, no stirrups, still a boss.

Broken foot, no stirrups, still a boss.

At times, I was simply a nerd that knew I couldn’t miss more school.

Some days, I did my best simply not to scare my mom. I am very, very protective of my family in many ways. I was more worried about my mom most days than I was of myself. Know that your diagnosis affects more than just you personally. Sometimes, I think that my mom suffered greater emotional distress than I did (and moms of the world, I know that you feel the same way). I dealt with the physical, but she dealt with the emotional. She worried about me constantly and also dealt with the brunt of my mood swings (from chemical and hormonal shifts within my body, reactions from pain, exhaustion, frustration, hunger, fear, the list goes on). I spent the most time with her, and while I know she would not have had it any other way, I could be rather difficult at times. I would get so tired of her concern (THANK GOD FOR IT), of being worried about, of being sick ALL THE GODDAM TIME. And I took it out on her. And, to be honest, I still do. But now she shares that responsibility with Alex. I can be tough to love, sometimes, but I (hope) that I can honestly say that I also love hard in return.

bitch

Get and give support.

Get and give support.

Request, and if needed, DEMAND the support of your family. Again, you are not alone in this life, and they need to know how to get on board with the fact that you/your body are NOT perfect. No, I do not mean let them point out all your flaws. What I mean is that they need to accept the fact that you might need help beyond “natural” or easy fixes. This can be very, very, VERY difficult for some people to understand and truly accept. Too often, I have met fellow Crohnies whose loved ones cannot fathom that they (the Crohnies) are afflicted with such an issue. Family can be more in denial than the patient. Even worse, the family members/loved ones will often REJECT the patient upon/following diagnosis because the patient is no longer perfect. This is absolutely unexceptable. When you are born with an affliction like Crohns, or PCOS, or Depression/Anxiety, etc, that comes to fruition later in life, you must remember that (and Gaga will back me up) you were born this way. They loved you before with it, you are still the same person. And you must remember that as well: you are still the same person. Don’t take liberties with your diagnosis. No, you cannot go and make out with everyone now, or EAT ALL THE COOKIES because your body will hurt no matter what you eat. This is not a free pass.

Although I could go on an on, I want to wrap up a little bit.

A few quick strategies for actively dealing with diagnosis, big or small:

    • Develop a plan for mental and physical treatment. Pick a goal, and GO FOR IT. Continue to pursue your passions, but….
    • Be smart about your limits. Limits should be tested but respected. Don’t throw in the towel at the first sign of struggle, but know that sometimes, your body ain’t playin’.
    • Keep pursuing and start something new. I started yoga, and I did it RIGHT. I took a few private classes and learned how to properly execute poses. This has provided me with a solid foundation for the practice that I have repeatedly returned to.
    • Remember that you are still YOU and life will not always “suck.” It might for a while, but you are MOVING FORWARD. Think of all of those “life is a marathon” metaphors: you are in a sh*tty (sometimes literally) mile, but you gotta push through that wall, eat some sport beans, and motor on. If you need a break, take a little walk but always with the intention to START RUNNING AGAIN (literally or figuratively).
    • Support your support staff. Take the time to show your appreciation. If you are bedridden, a lovely invention called the internet allows for online shopping. Even just flowers, or ear plugs (to tune you out), will be welcomed and provide some much needed relief and comedy.
    • Have a sense of humor. Find a way to laugh at yourself.  I have Crohn’s. I was diagnosed AT THIRTEEN with a disease that revolves around feces, pus-filled sacs, rectal exams, colonoscopies, bleeding ulcers, hormone fluctuations, ooooooh I could go on. There is very little that is sacred about my body when I am in the doctor’s office. Collecting stool samples is..well..yeahhhhh. Find a way to laugh about it. Catharsis. If you have to wear granny panties, get HILARIOUS ones. I had a pair with a giant gold star that I wore for my first colonoscopy so that they would be sure to know their target. But still retain some mystery so that your loved ones don’t just think of that when they should be thinking about other things ;D

demotivationdemotivator

ABOVE ALL, LOVE YOURSELF AND BE THANKFUL FOR YOUR LIFE. It could ALWAYS be worse. Trust me.

Talk to me, Goose:

How has diagnosis affected your life? Do you wish that you had approached your diagnosis differently, or are you proud of how you reacted? Please share!

If you are the patient, how do you keep changes in perspective?

If you are willing to share, what are some funnies from treatment? Like getting a sponge bath from a parent at the age of 30, or teaching your partner to get comfortable with the fact that you are not responsible for things emanating from your body lol…

And please, please, please do not hesitate to reach out to me if you have questions or just want to talk about what is going on–Crohns, stress fracture, anxiety, ANYTHING. I would be happy to lend a completely objective ear.

 

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23 Comments

  • Reply Baking in Yoga Pants

    You have an amazing perspective on life and I love how honest you are in sharing your story. I think it is so important to keep in mind that hard times will inevitably come in life, but that joyous times will come too. For me, Easter this year was a great reminder of the ultimate darkness followed by the ultimate light. Thanks for including us on your journey!

    April 22, 2014 at 6:35 am
    • Reply SuzLyfe

      Like you all had a choice! πŸ˜› Thank you all so much for taking the journey with me. Pushing through all of this would be so less satisfying if I didn’t have others to share in the victory. Easter is an excellent metaphor for the light at the end of the tunnel, and I can tell from your posts the past few days that something is up. Whatever it is, know that you have people in front of you and across the internet that care deeply for you. <3

      April 22, 2014 at 6:14 pm
  • Reply ranchcookie

    After reading your journey and after reading your posts on a weekly basis you are such an inspiration. You have shown anyone with these diseases that they can be overcome, because you are walking and living proof that you can live such a great, healthy and happy life you just have to push through it!

    April 22, 2014 at 8:06 am
    • Reply SuzLyfe

      Thank you so much for this–it means so much to me. I never claim to have all the answers, but I have some very good ones to some of the key questions. My hope is to help as many as I can–whether that be 5, or 100. But I have to say, I have an amazing support system, which you are very much a part of, so thank YOU for keeping me going.

      April 22, 2014 at 6:11 pm
  • Reply Laura

    This is such an amazing story – and I so know what you mean when you say the diagnosis sort of spurred the positive side of recovery. Just having a name is so positive. It’s like know what my injuries are right now – I feel like I can deal with anything as long as I know what anything means. You are such a strong person – thank you for all of your support and I hope I can return the favor!

    April 22, 2014 at 8:53 am
    • Reply SuzLyfe

      As you just wrote in reply to one of my comments: Yes. For always (although that one may have been about jelly beans, it STILL APPLIES). You, too, are one beast of a strong lady–and in the most feminine sense. You are working so hard–blogging up a storm, running up a storm, doctoralizing up a storm, and yet you do so with poise and elan. That is so rare. But knowing what you are facing is a huge part of the battle, I concur–like with your stress fracture, etc. And unfortunately, I think I may be dealing with something similar–thus an appointment on Friday…

      April 22, 2014 at 6:09 pm
  • Reply your Mommy, Clare

    from the “your mommy” point of view-

    Even if I can now share some of your “care” with Alex, you were, are, and always will be my child–not kid, teenager, married adult, but my child.

    …..and you’re right, you had really tough physical things to deal with. I had the more involved emotional ones. Moms and Dads are supposed to fix things, that is a major part of our job description…..and I couldn’t fix this,
    I couldn’t wave my magic wand and make it disappear. It was your disease, not mine, but you were the same kid you’d always been, we just now had a name for what had been making you so sick.
    A name, a diagnosis, hard as it is to hear, gives you a place to start–step 1 of a plan of action.
    I read everything I could get my hands on about Crohns and then had your doctor tell me “don’t believe everything you read online” –now she tells me! I had scared myself to death reading all the negative words, complaints, etc.

    So, I went to the right sites and saw some positives and, for the first time, hope.

    This was something we’d learn to live with, so I had better get started and think about the next step of the plan, not the crisis of hearing the words “incurable disease” applied to my 13 year old beloved daughter.
    A sense of humor is a very important thing, so are your beloved 4 legged animal friends who know how to help-by just being so glad to see you– even if you’d had a bad day.

    And, if you “mommies” need or want to talk, just let Susie know. I’ll always be here to give support and encouragement when they need it most.

    April 22, 2014 at 10:08 am
    • Reply SuzLyfe

      You are the ultimate inspiration–I will never be able to thank you and now Alex enough for being the rocks through everything. Even when I was a total b*tch. Because all of that venom came out because I felt that you all are the only ones that I could be that vulnerable with–the only ones that I knew could weather the storm.
      I love you so much.

      April 22, 2014 at 6:17 pm
  • Reply courtruns4cupcakes

    I love how upbeat and positive you are after everything you’ve been through and are still going through. Your blog makes me laugh everyday and you are such an inspiration to everyone! Thanks for sharing your story and being you πŸ™‚

    April 22, 2014 at 2:24 pm
    • Reply SuzLyfe

      Thank you so much–I’m so happy to have this little place to get all my “ish” out. And I so enjoy your blog as well. I love that I feel so surround by awesome people all the time. Thank YOU for being you.

      April 22, 2014 at 6:02 pm
  • Reply Fit 'N' Cookies

    I have colitis, so I know some of the effects you had to deal with as it took months and week long hospital stays to come to a diagnosis. I was put on tons of steroids for my colon and had to deal with all the feelings that come along with that. My mom was amazing, as was my husband (boyfriend at the time.) I remember feeling the same way as you- feeling bad for everyone having to deal with me. I felt bad when people visited me instead of living their life. I felt bad my mom had to check on me so much and be close by when I showered (passed out and smacked my head once during all this). It really, really helps to have the love and support. I was at college during the time, and when I had to be there and not home, it was my friends who took care of me and made sure I was alright. I know I have a disease, but the disease does not control my life. It does flare up from time to time, but I live with it, and know for the most part what works and what doesnt!

    April 22, 2014 at 4:26 pm
    • Reply SuzLyfe

      Precisely. One of the quotes that has defined my approach to my existence is by Jonathon Swift “may you live every day of your life.” We are people. I am Susie, you are Heather, and we are more than these issues that we are dealing with. Does this mean that we are perfect all the time, and that we can deal with these things all the time? No. We don’t have to. That is why we surround ourselves with amazing people (and trust me, the most amazing people surround those with chronic illness). You are such a good role model (and on a larger scale than me) for perpetuating the message. Keep it up!

      April 22, 2014 at 6:07 pm
  • Reply Novelties and Rituals #WIAW | SuzLyfe

    […] Flickr Twitter Facebook RSS Feed ← Revisiting Diagnosis […]

    April 23, 2014 at 6:01 am
  • Reply Debbie Bridges

    I’m so glad we “virtually” found each other through running. I am 6 weeks post my second small bowle resection for Crohns. I was diagnosed when I was 21 years old (I’m almost 53 now). It was 24 years between surgeries and my surgeon was shocked. She told me after this surgery whatever I was doing before it must have been working so keep it up. I told her running for the past three years has been both my sanity and my down fall. She told me I could start running again this week but I have to take it slow and smart. I am very short gutted now and not only is the proper nutrition a problem but staying hydrated will be as well.

    My husband has been my rock. When I found out I needed this second surgery and that there was a chance I would need an ileostomy, either temp or permanent, I seriously tried to push my husband away. I didn’t want him to see my like that but in reality I didn’t want to see me like that. I am a private, independent strong woman and having to have someone do things for me is hard. Even this last surgery I was down hard for three weeks and having him help me put on my undies was humiliating in the beginning. When I realized that letting others do for me now was ultimately going to get me back to myself in the end I accepted it.

    My daughter is away at college, my husband is back away on assignment and now I am back to standing on my own two feet. I have run twice this week, one mile and 1.25 miles but I’m coming back, slow steady but determined.

    I look forward to this blog for tips, advice, comfort, humor and knowledge. I am here for you for all the same and more.

    Debbie in Brunswick Maine.

    April 24, 2014 at 7:08 pm
    • Reply SuzLyfe

      I am so glad that we found each other as well. I think all too often we either forget that we have these issues or they are all too present to forget. I guess the one thing that I have always tried to do with my body is to live it the way I can and to honor and respect what it tells me when I can. I can’t imagine what you are going to have to go through now–you will essentially have to re-learn, to an extent, how to treat your body when you run–I hope you keep me apprised of what does and doesn’t work–I find these details fascinating, and would love to discuss it further with you.
      I know all too well the tendency to push away and to hurt the ones that love you the most–whether it is to protect them or to protect yourself. Multiple times, I questioned my relationship with my (now) husband because I was so hormonally imbalanced and didn’t realize it. My husband and my mom have been my rock through my greatest struggles, and they have borne a great deal of my wrath, but they also have my eternal gratitude, and I would do anything for them. We sound so much alike–strong, independent, and defiant, and, for you (and me of the past, though this might rind just as true now, just in a different arena) trying to recover and find ourselves again without losing what makes us, us. And a huge part of that is indeed allowing others to help us. And to realize that we aren’t burdening them–they are choosing to be there.
      I am so, so thankful to you for sharing your story with me, and so, so proud of you for staying strong, believing in yourself, believing that you deserve more than what our disease would like us to believe, and for every step you take on those runs. Because those runs, they are for you, by you, of you. It won’t be easy, but you will get there. I hope that you will take me along for the journey. Please, please keep in touch.
      S

      April 24, 2014 at 9:07 pm
    • Reply your mommy, Clare

      Debbie,
      I’m Susie’ s mom and I have a perspective on what you are going through from a very different view. I’m not sure that this blog is the forum for that sharing, but I’d be more than glad to “talk” with you.
      Long story short–my mom was diagnosed with colon cancer when I was 20 and she was 56…….a long time ago.
      I’ve seen both sides of this coin——as the child and as the parent.
      I’d love to help you in any way I can.
      Please just let Susie know, if and or how and she can put us in touch.
      Clare

      April 25, 2014 at 10:53 am
  • Reply It’s Been Awhile #RecipeFriday #FFavorites #Strangebutgood | SuzLyfe

    […] I could favorite you all and myself like a Tweet, I would. The Diagnosis post really seemed to hit home with people, and I was so proud of those who stepped forward and […]

    April 25, 2014 at 6:00 am
  • Reply Lauren @ ihadabiglunch

    Wow I had no idea about all this – thanks for posting about it! My basketball coach in high school had Crohn’s and I know it will literally knock you off your feet in pain. I can’t even imagine….you give some amazing tips, though. It’s pretty easy to focus on the pain/what you can’t do anymore, but you decided to add some new things into your life like yoga to make you feel better. Way to take the reins – I feel like if you feel in control of your sickness/how you react to it then you feel better about it overall. I don’t have any chronic pain (thank goodness) but I do struggle with anxiety (who doesn’t ,right?). I just decided yesterday, actually, to start seeing someone about my anxiety. I’m absolutely NOT interested in pills, but I want to talk things through with someone who is impartial to my life and who has experience dealing with people like me (aka overthinkers, freakout-ers haha).

    April 25, 2014 at 1:42 pm
    • Reply SuzLyfe

      I’m so glad that you felt comfortable enough to say this. Anxiety is something that can take over your life just the same as pain-you fear it’s appearance in your daily life, and it will cause you to avoid interactions and situations that may trigger it. Please go and see someone for it, and if you ever need to talk to someone who has dealt with clinical anxiety, I am just an email away. <3

      April 26, 2014 at 7:31 am
  • Reply I wanted the Giant Pink Lawn Flamingo #MIMM | SuzLyfe

    […] with in every day life and to speak about in a public forum. I am bring back the Tough Talk series, as I discussed last week, and I invite you to go to the Tough Talk page (use the menu up above) and maybe catch up a little […]

    April 28, 2014 at 6:03 am
  • Reply Not as Planned--Starbucks, Stealing, and Sproing

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    October 27, 2014 at 3:40 pm
  • Reply Spaghetti Squash Protein Pancakes + New Uses for Favorites

    […] I could favorite you all and myself like a Tweet, I would. The Diagnosis post really seemed to hit home with people, and I was so proud of those who stepped forward and […]

    October 27, 2014 at 3:40 pm
  • Reply Pre-Race Rituals and Some New Finds

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