Tag Archives: communication

Blooming Where I’m Planted

tiffatvandyDo you see that girl? That’s me- four years ago. (Do you see my awesome collection of stuffed animals? Yeah, my husband specializes in fluffy gift giving.) Four years ago, I participated in an inpatient research study at Vanderbilt University Medical Center (Clinical Research Center) during the 4th of July. I knew that I would never be well enough to participate in cook outs or fireworks, so I spent 11 days in the hospital doing experimental treatment for autonomic disorders. I was new to my POTS (Postural Orthostatic Tachycardia Syndrome) diagnosis and not yet diagnosed with EDS (Ehlers Danlos Syndrome). I was confused and angry. I had left my career as a middle/ high school Spanish teacher nine months prior to this picture. I had no clue who I was or where I was going. In my mind, I had lost my worth as a professional, wife, and friend. But, during the same hospital stay when this picture was taken, there was a faint bit of inspiration that flickered amidst my desperation. I have no idea where I got this phrase- but I’m not especially creative, so I probably read it or heard it on television. But, the phrase that echoed in my mind and heart was, “You have to bloom where you are planted.”

I, like so many others, did not choose to be planted in current circumstances. I did not study to become a sick person. I didn’t marry my husband with hopes of being his disabled wife. However, if we’re all being honest, there are few of us who have written our own way. Life has planted us in some less than ideal places, and we have to decide what to do with the situation. Don’t misinterpret what I’m saying. I’m not going to tell you that all you need to do is smile or have a good attitude. Not at all. There are days when life isn’t a greeting card. There are days when I cry and complain and whine and eat all the junk food. However, in spite of a difficult situation, I choose to bloom.

Yesterday marked four years since the first picture was taken. I can still remember the emotions and pain of that day. I can remember trying to force a smile for a picture- but feeling like the gifts I was posing with were little more than a sympathy offering- little more than flowers at a funeral. Yesterday, I took a new picture- at my first ever book signing. My symptoms hadn’t changed (Has anyone else blacked out when they heard a fire truck’s siren? That was new for me.), but my perspective had.

I’m not handling all this perfectly. I won’t ever be the great inspirational story of the person who overcomes adversity. However, I live my adversity; I accept it, but I also choose to laugh and smile and advocate in spite of it. I’m blooming exactly where I’m planted- even when I wish I could uproot and move to higher ground.

So, how did I get here? I didn’t wake up one day and decide I like chronic illness. I didn’t adopt my “Bloom where I’m planted” mantra and immediately become a blogger. Heck, I didn’t even start giving unforced smiles at that point. But, I started laughing. I started looking for the hilarity of my newfound life circumstances. I slowly changed my thinking from, “I can’t believe this is happening to me” to “You won’t believe what’s happening now!” Regaining my sense of humor and finding my voice, allowed me to bloom.

The past four years have been the most transformational of any I’ve experienced. I have hurt and endured more than I would have believed. However, I’ve become more understanding. I have increased my capacity to love. Ultimately, I’ve become a person I wanted to be- but that girl four years ago could have never believed possible.

I will never be grateful for illness. If I had the ability, I would heal us all in a heartbeat. However, I am grateful that my broken heartedness has healed. I am blooming. It’s not always pretty. (Heck, I’m probably more of a weed or a wildflower than a beautiful, manicured rose.) I am proud of the growth of the past four years, and I look forward to continuing to bloom with all of you.

Peace, love, and health, friends.

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I’m Pretty Sure You Want This Book.

This (link at the bottom) is my book. Okay, technically, it’s Joe’s book too, because he did a lot of work on it. But since I’m the person with the chronic illness and this is a book about chronic illness- well, I’m a little emotionally attached. Just in case you’re thinking you don’t need this book or don’t especially want it, humor me while I make my case.

So, here are the “Crazy, Chronic Reasons Why You (might) Want to Read This Book.”

  1. It’s a beautiful love story. Okay, it’s not exactly a beautiful love story. As a matter of fact, I mention bodily functions that are neither beautiful nor lovely a couple times. However, Joe and I wrote this together. He literally saw my desire to write a book and not only encouraged it- he did a lot of the work. We talked through every chapter together before I wrote it. He physically typed a lot of the book, because my crazy, dislocating hands wouldn’t allow me. We have called ourselves #TeamEarly from the beginning, and this collaboration showcases exactly why. We work together. We laugh together- and, when necessary, we cry together. So, while a book instructing you with how to cope with very public and very projectile vomit isn’t exactly romantic, the love and cooperation that went into each page certainly is.
  2. It’s likely to boost your confidence. Do you want to know why it will boost your confidence? Because as you read through this book and experience our raw honesty, there will be times when you’ll think, “I would never be dumb enough to get myself in that situation.” See? You’ll feel smarter. Okay, seriously, this book talks about embarrassing symptoms that so many of us face- brain fog, incontinence, mobility struggles, etc. Let’s be honest- I’m about as graceful as an elephant changing underpants. I have a long history of blunders to share. I will give you tips to saving face as much as possible when your body decides to be a jerk in the least convenient of places. Personally, I always feel more confident when I have a contingency plan.
  3. People seem to actually like the book. You guys, I have reviews, and they’re not bad. They’re actually, well, great! Even more impressively, to the best of my knowledge I am not related (by blood nor marriage) to anyone who has reviewed my book. You never know when you write something if it will reach your audience in the way you hope. There’s a chance that Joe and I have been drafting and typing our little hearts out on a project that stinks. But . . . it’s beginning to look like it doesn’t. I actually believe we may have accurately portrayed this life in a way that others can relate.
  4. It will make you cool. Okay, there are many words that could describe me, and “cool” will never be one of them. I will never listen to the right music or understand pop culture references. However, illness has made me more sensitive to the needs of my chronically ill/ disabled friends. We have done our best to convey to significant others, caregivers, friends, congregations, and ‘that lady from WalMart’ how to be aware of the needs of others. And, seriously, what’s cooler than compassion? Am I right?
  5. I will appreciate your support forever. Everyone isn’t in a place where they can buy a book. I understand that completely. Please know that every word of encouragement, like, and share mean the world to me. My Crazy, Chronic Life blog audience was the driving force behind this book, and your love and encouragement help me keep my head above water on the hardest days.

Friends, each of you have encouraged Joe and I throughout this process, and we truly appreciate it. (I considered telling everyone that to show our gratitude Joe would be available to sing at the wedding of anyone who buys our book. Strangely, he didn’t consent to that.) So, one more time for the people in the back- my book link is below. Try an excerpt. See if it’s for you- or if it might help someone you know.

Peace, love, and health to each of you.

What $50 Buys When You Have a Rare Disease/ Disorder

About a year ago, I went to a new doctor. My hip was dislocating, and my primary doctor thought I needed to see a specialist. The specialist was the “new doctor,” and let’s just say I was not impressed. I waited a couple weeks to see the doctor (by which point my hip pain went from excruciating to simply quite painful); I paid my $50 co-pay to see the specialist. I had the x-rays and preliminary tests the doctor requested. I followed the rules. I was as prepared as I could possibly be as a patient. I went into that appointment feeling as though I was holding up my end of the bargain wonderfully.

I wasn’t prepared for the doctor to fail me completely. Here’s what happened. The doctor talked to me for five minutes and made assumptions. When I told him I had a rare disorder called Ehlers-Danlos Syndrome, he nodded and said he had researched it. I told him my hip seemed to be coming out of socket. There was horrible pain and instability. When the hip was out of socket one leg was longer than the other, and the foot of the longer leg was turned to the side and would not face the front. The doctor chuckled and said it was impossible that I had handled a dislocation without going to the ER.

Have you even met me? I have EDS! I pop dislocations back into place daily. I’m asking for help keeping this darn hip in place- not asking for your judgment about whether or not this hip is actually dislocating. The doctor went on to tell me that during his research of “Eglers-Dallos” (What? Seriously, dude? No one even gave you a pronunciation guide?) he had never come across any data that showed that patients had pain or dislocation associated with the condition. He told me that if I really felt I was in that much pain he couldn’t help me, and the cause could be more psychological than physical pain. Seriously, Dr. Deficient, just because you don’t understand my illness, that doesn’t mean that I am faking it- or that it’s all in my head. (By the way, even if it were all in my head, you have a responsibility to me as your patient to assist me in getting help.) It means you need to educate yourself more. It at least means you need to do some serious work on your bedside manner. Did you skip that class in medical school? Are you kidding me? I paid fifty dollars to be laughed at and shamed?

Herein lies the problem for those of us with rare diseases/ disorders. Few doctors are knowledgeable about our illness. We are forced to play a guessing game of which doctor will give us adequate care- and which doctors will brush us off because they aren’t educated in our condition. Ehlers-Danlos Syndrome is somewhat rare- and proper physician education about the syndrome is even rarer. I understand that. I don’t expect every single doctor to understand my condition. However, I do expect all medical professionals to listen to me. Trust me to be an advocate for my condition. It is completely fine with me if you Google my disorder. I promise not to judge you for not knowing. However, if you make me feel ridiculous and silly when I am trying to explain my condition to you- that’s not okay.

Here’s the embarrassing part of this story- I didn’t say a word. I felt like he was accusing me of lying or at least exaggerating, and I was so ashamed that I couldn’t plead my own case. Even though I at no point wanted or requested pain medication, I felt as though this doctor believed I was just seeking narcotics. I was embarrassed. I felt criminalized. I left that appointment and sat in my car and cried like some kind of victim. I allowed that to happen. I am educated about my disorder, and I had every right to stand up for myself and tell that doctor that his “Eglers Dallos” research was wrong. But I didn’t. I nodded my head and said “thank you” and “I’m sorry” then cried in my car. Stupid. Just stupid.

For those of us with rare disorders, this is what we can expect in exchange for our co-pay, and that is not acceptable. This is why World Rare Disease Day matters so much to me and others within the rare disease community. On this day, we get to make a little noise for the disorders that few in the medical community discuss. We get to inform those on our social media and in our day to day lives what our disorders are all about. We get to spread awareness, so that in the future maybe other sufferers of our illness (and other rare diseases) won’t feel like a victim due to their doctor’s lack of understanding.

I am not bashing the medical community in the least. I have had the pleasure of meeting some fantastic medical professionals- doctors, nurses, physician’s assistants, etc. I am so grateful for the caring and considerate people I have met through various medical procedures and appointments. I am saying, however, that we as patients have to stand up and be our own advocates. Every doctor has a responsibility to listen to us- and every member of the rare disease community has a responsibility to make themselves heard. So, do me a favor, friends. This World Rare Disease Day (February 29, 2016) educate a friend, a family member, or your social media followers about a rare disease that is near and dear to your heart. I’m not asking that you share about Ehlers- Danlos Syndrome specifically. Share about Wilson’s Disease. Share about Charcot- Marie- Tooth Disease. Share about Retinitis Pigmentosa. Share about a disease that affects someone you love, because that person you love deserves a lot more understanding than what they’re currently getting for their co-pay.

Peace, love, and health.

** By the way, friends, I was eventually vindicated for my terrible doctor experience. Another specialist ordered an MRI of my hip. She found that my hip labrum had degenerated and was not capable of keeping the joint in socket correctly. Surprisingly, this new doctor went to medical school with Dr. Deficiency (not his real name- that was just the kindest thing I could think to call him) and sent him a report of her findings.

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My social skills are still in tact- sort of.

I actually wrote this blog post about a year ago, but I wasn’t comfortable with posting it once it was written. It’s not that it’s deep emotional stuff, but it’s a little embarrassing. I realize that it’s strange that I get so excited about getting out of the house, and I realize that it’s even stranger that I get so nervous about it. The truth is, a year has passed, and I haven’t taken many more social risks. I’m okay with that. I’m still hoping there will be a day when I snap out of it and become unapologetically me- capable of being bold and brave entirely on my own. But I also realize that I’m a work in progress, and it probably won’t happen overnight. For now, I have plenty of people to keep me adequately socialized from home or via phone/ Internet. I also have my new Facebook support group friends, and I am completely blown away by the love and acceptance they show. So . . . you know, it’s all good.

A side effect of being a ‘professional sick person’ is that you don’t necessarily see a lot of people. Seriously, several days (and I really mean several) go by, and I don’t speak to anyone but Joe, my mom, and Zoey (the dog). This is partially my fault (because I really hate talking on the phone- why can’t people just text?), but I really believe that my social skills have suffered. Those of you in a committed relationship know that there are conversations that you have with your significant other that just are not acceptable among the general public. I mean, Joe handles my late night, incoherent ramblings (so does my mom via telephone), and no one else in this world should have to put up with that.

But today, I had lunch with a new friend. I woke up (technically, Joe and Zoey woke me up); I got ready, and I drove to a restaurant near my house. Simple, right? Not so much. See, in my two years of being too sick to work, I’ve not exactly been a social butterfly. As a matter of fact, I realized this was the first time since I got sick that I went to lunch with a peer without Joe there to keep the conversation moving. I was super stressed. I mean, what if I was at lunch and got sick? Normally Joe is with me, and I can just say, “Let’s get out of here before something dramatic/traumatic happens.” But, with someone new, can I do that? I mean, what if she thinks I’m crazy? Oh no, what if I am crazy?

Can you tell by now that I was totally working myself up over nothing? Somewhere in the two years that I’ve been staying at home I’m pretty sure I developed social anxiety. Now, it’s only fair that I say at this point, that my new friend is totally cool. (I should have asked her if it was okay if I blogged about her, so I could say her name. However, it’s sort of fun that I can’t say her name . . ., because you’re totally assuming I had lunch with a major celebrity today, right?) I could have fainted, taken meds, possibly scratched my face with my feet, and I think she would have been fine with it, amused, but fine.

The reason I shared this with you (other than to brag about the fact that I made a friend!) is to point out that relationships when you have a chronic illness are different. I rely on my husband for a lot of stuff. I rely on him to give me all the time in the world to get ready. I rely on him to accommodate for how I feel. I even rely on him (occasionally) to help me remember whether I’ve taken medicine that day. Because of my reliance on Joe, I have made it difficult on myself to venture out. I’ve isolated myself from a lot of my friends from my former life (ie. healthier days), because their normalcy was more than I could handle. In a sense, I disabled myself a little. Chronically ill friends, please try to maintain relationships outside your marriage. Spouses, partners, caretakers of the chronically ill, encourage ‘your sick person’ to venture outside of their comfort zone. Being sick is a lot to handle for both people in a relationship. You will need support. And not only support, you are going to need fully functioning social skills at some point, too.

Oh no, I just had a thought. Do you think my new friend will still want to be my new friend when she realizes I made a whole blog post about going to lunch? Just when I thought my social skills were recovering . . .

Peace, love, and health, friends.

Crazy, chronic relationships require communication.

Yes, I know. All relationships require communication. I’m not suggesting my healthy friends give up communicating with their spouses/ significant others. I am, however, suggesting that my chronic illness friends recognize how crucial a role communication plays in their relationship.

I had a Cricket doll when I was a kid (A talking doll of the early/ mid 80s- If you remember Cricket, you and I are instant besties!), and I still remember my favorite line from the creepy, robot-like doll- “Do you wanna know why I talk so much? It’s because I have so much to say!” Yeah, that’s me. I am typically an over-communicator. I talk about my breakfast choices, my dreams, current problems with fixing my hair, my views on kale, pretty much anything that bounces through my mind. The thing is even though I talk a lot, I don’t necessarily say what I’m really thinking. Sharing what is really going on requires vulnerability. It requires me to trust that Joe will be able and willing to meet my needs. And, honestly, even though we have been on this crazy, chronic illness road for a while now and have gotten pretty good at understanding each other, sometimes the wheels of the communication truck fall off . . .

A few weeks ago I had an appointment with a geneticist, and I was quite nervous about it. See, when you have POTS, you typically have some sort of underlying cause. Basically, POTS is a syndrome that happens as the result of another illness (not always, but this is often the case). It’s frustrating because it’s difficult to find a doctor who understands POTS well enough to diagnose it, and even once POTS is diagnosed you have to keep putting pieces in the puzzle to figure out why you have it. I was referred to a geneticist to investigate any underlying conditions.

I was nervous for a number of reasons. There’s the obvious, “Oh my goodness, please don’t give me any terrifying or devastating news” reason to dread a doctor’s appointment. However, when you are a generally healthy looking 30 year old female, a lot of doctors don’t seem to take you seriously- which is an incredible waste of time and resources. Anyway, the doctor was wonderful. He took me seriously, and he was able to pinpoint my condition just from my family and medical history (which he confirmed through a clinical evaluation). I was diagnosed with Ehler-Danlos Syndrome (http://ednf.org/hypermobility-type)- EDS is a condition where the body makes faulty collagen. As a result, joints are lax (because the ligaments holding them together are made from poorly formed collagen) causing incredible joint pain and other systems throughout the body are also negatively affected. (Did you know that every system in the body requires collagen? Who knew?)

So, this basically, sort of, stinks. Because POTS occurred as a result of a lifelong, genetic condition, it is unlikely I will recover from it. Not to mention the inevitable lifetime of joint pain and dislocations that comes along with EDS. It’s a lot to wrap your head around. However, I wanted to avoid a meltdown. So, when Joe and I left the appointment I said, “That was a great appointment. I loved the new doctor.” That was all true. The appointment was everything I needed it to be. It was informative and conclusive. The doctor was helpful and kind. None of that changed the fact that I was still reeling from a new diagnosis, though.

What happened next was completely my fault, but my intentions were good. I gave Joe the most positive spin ever on a doctor’s appointment (I mean, he was in the room with me. I just assumed he already felt gut-punched by all the scary stuff.). As a result, as we drove the 2+ hours home from the doctor, I poured through the information the doctor had given me about EDS while Joe called people and kept telling them how we had had a wonderful appointment. Hmmmm . . .

Again, this really wasn’t his fault. I didn’t share my concerns with him. He wasn’t in my seat reading about aortic aneurysm risks or organ ruptures. He wasn’t imagining a life of chronic debilitating pain or wondering how much more pain he could deal with before he just couldn’t deal any more. Nope. All Joe had to go on was, “That was a great appointment. I loved the new doctor.”

What happened over the next few days was a continued downward spiral. Because Joe had to miss work to take me to the doctor, all of his coworkers knew about my appointment. As people asked about the appointment, Joe kept assuring them it went really well. And, it did. Or at least that’s what I said. Or maybe what I wanted to believe. I don’t really know. I only know that I felt more and more isolated every time I heard Joe give the good report. I spent a couple days feeling all sorts of emotions- all sorts of alone. I was hurt that he didn’t understand how I felt. I was angry that I had misled him so badly. I was completely confused about how to fix the mess.

You can probably guess how this ends. I was hurt and angry and defensive, and Joe, well, he was clueless. My husband is the most intelligent man I know, but even he can’t read minds. I was able to communicate how I was feeling, and Joe (in a way only those of you in a committed relationship can understand) apologized for doing something that he wasn’t even aware of doing. Was there anything for Joe to apologize for? No, of course not. The problem was my own creation. However, I created the problem out of an effort to stay positive- an effort to make him (and maybe me) believe that I wasn’t freaking out.

The moral of the story, crazy chronic friends, is to be honest. Be honest with yourself, first of all. If you are scared of a diagnosis, a new symptom, or whatever, don’t try to fake it. It won’t help. Admit that you will probably need some emotional support. Then, be honest with whomever you are trying to maintain a relationship with. I should have said, “Okay, Joe. That scared me. I’m going to need some support while I wrap my head around a new diagnosis.” My first few days (and weeks) following diagnosis would have been a lot simpler. Heck, he might have even offered support by means of chocolate, and that would have made everything better.

Peace, love, and health, friends.