Tag Archives: Relationships

Fricka Fracka- What the Heck is BRCA?

Hiya! Howdy! Ahoy there, mateys! I’ve missed all of you. I have been so very absent from the blog lately, because I had no idea what the heck to tell any of you. So . . . I’m going to start at the very beginning- because “The Sound of Music” taught me that is a very good place to start. All of this is important, because it leads to a coming announcement for the Crazy, Chronic Life community- but I’m going to save that for a couple days.
If you’ve read our book, you know that medical research is important to me. So much so that I am registered with ResearchMatch.com to participate in medical research studies. Typically, it consists of me filling out questionnaires and submitting them to someone who is compiling data for a study. I received an e-mail asking me to participate in a genetic testing clinical trial at Vanderbilt University. All I had to do was allow the study coordinators to collect a vial of blood- and I got a $40 Amazon card. Character flaw admission- I will do almost anything for an Amazon gift card.
So . . . here’s the thing. If you allow someone to analyze your DNA, you will find out stuff about your DNA that you would prefer not to know. In my case, I got a letter (almost a year after I had given the blood sample) telling me I had a pathogenic mutation on the BRCA2 gene and should see my doctor immediately. Here’s the embarrassing part- I had no stinkin clue what that meant, so I shoved the letter in a drawer. I learned my coping skills from an ostrich apparently.
A month or so later during a check up with my PCP (I had lost 3 pounds since my last check up, so I was feeling rather proud of myself), I asked if he had any idea if a BRCA2 mutation was an issue. I’ll be honest; he did a google search in front of me. Then, he informed me that I had an 87% lifetime risk of having breast cancer. 87%, friends. Y’all, my boobs are trying to kill me, and I didn’t even know. He continued to tell me that the recommendation is to have a hysterectomy and oophorectomy by age 35 and a double mastectomy by 40. What the actual heck?
Now, I’m not the type to completely base my life on a Google search. So, I scheduled an appointment with my gynecologist- but remained relatively calm. I talked to Joe about it, and his initial response (and we’ve come along way since this time) was, “You can’t start cutting stuff of your body because you’re scared you might eventually get cancer.” To be honest, I agreed with his assessment of the situation at that point. Full disclosure: when I got the first problematic mammogram call back, Joe responded by vomiting, crying, and promptly melting down- in a public venue. Y’all, this has been an ORDEAL.
Jump ahead a few months, 2 genetic counseling visits, a high-risk coordinator visit, and a couple breast lump scares that turned out to be nothing, and I’m here. I have an over 80% chance of having breast cancer between the ages of 30 and 50. I have a greater than 50% chance of ovarian cancer- and an elevated pancreatic and melanoma cancer risk. I’m compiling numbers, so you might see higher and lower odds depending where you research. However, the point is, my body is just itching to make a tumor, because it has no idea how to NOT make tumors.
It’s been a scary few months- and the concerns have been so far outside of my normal realm of medical concerns that I haven’t felt equipped to process them. I haven’t told the CCL community, because I didn’t know where to begin. Now, as a new year is approaching, I feel empowered. While I had no idea when I entered this genetic study that I was going to get life changing information, I am grateful, because this information will inform my decisions (and my family’s- which is a whole different and serious blog) as I move forward. More importantly, I know to be vigilant about screenings and self-checks- things I had never considered prior to this information.
Why am I telling you all this? Because, I can’t stand for ‘peace, love, and health’ and keep major health secrets. Additionally, if you have a strong family history of cancer, I want to encourage you to have a genetic cancer panel. (I actually had a second panel completed in case the research study genetic test was flawed.) Waiting for results is torturous. The only thing worse is trying to understand and coordinate a plan once you have results. However, ultimately, knowledge is power.
I asked a patient leader group that I’m in what they do when they get a new diagnosis. I had literally no stinkin clue if I was supposed to be an advocate for EDS, POTS, chronic illness, invisible disabilities, and, oh yeah, BRCA mutations. I still don’t exactly know. However, if my story and my BRCA journey informs or inspires someone else- then I’m all in.

Peace, Love, and Health.

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Community Unity Opportunity.

I’ll be honest, I’m not at all grateful for illness- especially illness of the chronic variety. Fortunately, I’m not the type who believes that God made me sick to teach me some divine lesson, so I don’t feel any compulsion to be thankful for this portion of my life. Having said that, I realize that the longer I continue my journey of life with chronic illness, the more I am grateful for community. Before my symptoms reached a life altering level, I had no idea what it meant to be surrounded by support from people I had never met.
While I consider myself very much an introvert now, for most of my life I’ve been surrounded by people. I’ve been a participant in church groups and choirs, committees and classes, clubs and organizations. Now, my body can’t keep up with all those memberships. It requires a day’s preparation to make it to one event- forget trying multiple events in a day. And while that much socialization would be exhausting for me now, I still long to be around people who understand me. Now don’t misunderstand. I have wonderful family and friends. My husband handled my illness far better than I could have asked. My Mom still texts me first thing every morning to see how I slept and talks to me at night to hear about my day. I have great physical support- but I can always use more.
The first months of being sick/ disabled were the worst. I was too ashamed to reach out to friends who knew me pre-illness and too scared to reach out to new people. I thought the idea of joining online support groups was ridiculous. What kind of loser needs people she’s never met to help her navigate life? This kind of loser. Me. As I started looking for groups and forums for those living with chronic illness, I found people who could understand. I found kindness and compassion and empathy. I found people who didn’t think I was weird because I was too tired to both shower before an event and then actually attend that event. I discovered others who were living with the shame of not being able to keep their house as organized as they’d like. I even found friends who understood how it felt to decide not to have children- yet be simultaneously heartbroken by that decision.
Without my communities of online friends, I would have never discovered blogging or felt compelled to begin my own chronic illness communities both online and in person. I credit those friends who pulled me through the beginning of this awfulness with all that Crazy, Chronic Life has become. But, it occurs to me that I’ve yet to make an exhaustive list of all the ways you can participate in the CCL community. If there’s a community that interests you, join us. I promise; we’ll be glad to have you.

Crazy, Chronic Life- FB page– This is the main Facebook page where all new blogs and CCL updates post first. I also use this page for live videos and polls.

Facebook Crazy, Chronic Life Support Group– This group is for those with chronic illness- or their caregivers who may seek to understand more. Join us contests, silliness, and all the support you can handle.

Taylor County Public Library- Chronic Illness Support Group– If you live in or near Campbellsville, Kentucky, come join the in person support group and meet some of the (in my opinion) coolest people in Campbellsville!

Sorry for posting twice today. I’m trying to get all my “blog keeping” tasks caught up before I leave for Nashville.

Peace, love, and health, friends.

New Workout Plan- Getting Over Myself

Friends, I’m going to be entirely honest with you. Sometimes my biggest obstacle in living with chronic illness is me. I stand in my own way sometimes, and I’m trying to learn how to stop that. I’m trying to learn to get over myself- my ego, my plans, my wishes- and enjoy life as it is.
Getting over myself at the gym.
Today, I was at the gym (it’s not official unless I tell someone on social media, am I right?), and I had one of those moments. You know, those moments when you’re completely aware that you’re struggling and no one else is. There was a young woman in the gym who based on my observation must be training to be the next Ninja Warrior or planning to fight dragons. She lifted weights, jumped with said weights, hopped like a frog, leaned, and grunted. It was an impressive sight. Meanwhile, I was chugging along on the treadmill at a snail’s pace. Was she doing her best? Obviously. Was I? Yes. That should be the end of the standard for success, but it’s not for me. You see, I kept thinking about how embarrassing it was to not be able to do anything but walk on the treadmill. I played out scenarios in my head where someone asked why I wasn’t doing more. None of those things happened. The others at the gym did their thing (including Super Woman doing her ninja training), and I did mine. I had to repeatedly remind myself that the judgment I was feeling was all imaginary. Everyone has a different best effort, and that’s okay. I know that. It’s just easy to forget when it seems like everyone is way more impressive than I am.
Getting over myself in my marriage.
You may have noticed, but I tend to take things personally. I swear, Joe could say, “It’s a beautiful day outside,” and my insecurities would immediately lead me to believe he’s trying to hint that he wants to be outside away from me. I’m working on it; I know this is a weird character flaw, but it’s part of me. So . . . sometimes, I have exactly zero patience with Joe’s complaints. I get it. I’m being a jerk. Don’t worry- I’m self-aware. You see, Joe has aches and pains as well. This shouldn’t be a surprise to me, but sometimes it is. In my own struggle with chronic pain, I sometimes forget that non-chronic illness folks (muggles, as I like to call them) have their own struggles.

At my worst, I’m almost offended that Joe has the audacity to tell me he hurts. I’m irritated when he tells me (to be fair, he’s telling me for the zillionth time- sorry, snark attack) that his shoulder hurts from an old weight lifting injury or that he has a headache. Don’t get me wrong. I love my husband. I have no desire for him to ever hurt or be uncomfortable. If I had the ability to take all his pain on myself I would- but I would probably act like an obnoxious martyr in the process. Being sick puts a strain on any relationship. Being perpetually sick basically gives your marriage/ relationship an eternal toothache. It’s not easy. As much as I love my husband and never want him to be in pain (misery does not love company- I have no idea what kind of sadist came up with that idea), I’m sometimes offended that he is so brash as to tell me about his “muggle maladies.” I feel as though he is disregarding my struggle if he tells me his shoulder hurts. I feel like I’m being minimized if he feels bad on a day when I’m also struggling. Again, I know I’m wrong, and I’m trying to grow. However, we sometimes show our ugliest self to those we love the most. (If you don’t believe me, think about how we all acted to our parents when we were teens.)
Getting over myself online.
As a person who spends a lot of time isolated because of chronic illness, roughly 70% of my life occurs through social media. I’m not ashamed by that, because my support groups and online friends have helped me find strength for this fight, and I’m very grateful for their support. However, there’s a tendency in online forums to want to be sickest. I feel like I have slayed this particular dragon to some extent, but it seems worth mentioning. Often, as people with chronic illness, we go to social media forums seeking understanding. I would venture to say that no one in an online support group got there while thinking, “I have all the understanding and support I need in my life.” Everyone there wants understanding. However, sometimes in the quest for understanding, we can get a little competitive. In our desire to have others understand why we struggle, we sometimes try to eclipse each other. I remind myself frequently that while it’s great to empathize with others, there’s no need to share my personal experience all the time. Some friends just want to be heard, and that’s valid as well.
Ultimately, I’m a work in progress. I have worked through some of the emotions of being chronically ill, but there are new feelings and mental dragons to slay every day. While my own physical workout plan isn’t exactly impressive, I’m adding the mental feat of getting over myself to the list. It’s not easy- and some days it feels almost impossible- but my health, my relationships, and my happiness are worth it.
(I’m stopping here, because the All-Star game is coming on- Go Braves!)
What about you? Are there areas where you struggle to get over yourself? It’d make me feel way better to know that I’m not the only one.
Peace, love, and health.

I’m not always Pollyanna.

So, I’m not always Pollyanna. Don’t get me wrong. I try to look on the bright side. I remind myself that this exact moment of emotions and self-pity won’t last forever. Joe and I are known for being the people who have figured out how to make the best out of bad situations. That’s who we are- and that’s what we do. But, some days it doesn’t happen.
Some days I’ve been awake most of the night with aching joints and tingling arms and legs. I’ve slept fitfully at best. New neurological issues haunt my body- some which I’m not comfortable enough to even write about yet. I feel like I am begging for help that isn’t coming, and I’ve been down this road enough times to know that it’s a long one. Today is a day where I’m aware that even if my diet is perfect and I combat all my inflammation issues, my body will still be affected by this disorder at the most basic cellular level. I know there aren’t enough trips to the gym to enable me to enjoy Disney World in a couple of months without the aid of a scooter. I even realize that holding my body together for a week of vacation is going to require an effort of epic proportions.
I’m not trying to be negative. I don’t write this for pity. I don’t want anyone to feel like they have to encourage me to keep going on (though I appreciate all those who have done that in the past). I won’t quit. I know this feeling won’t last forever. However, today I’m sad. I’m so pitiful, in fact, that Joe is cooking lunch and bought me surprises at Walmart (a Frozen toy, Saved by the Bell t-shirt, and chapstick- I have simple taste, friends.).
My point is- it’s okay to be sad sometimes. You can’t live in the valley of despair forever. I’m not suggesting anyone live a life of self-pity, because that requires more energy than any of us possess. However, give yourself permission to mourn your losses sometimes. Tomorrow, I start with a new physical therapist. Wednesday, I get a haircut. Friday, Joe and I have a date night scheduled. This week won’t be a waste- I won’t let it. But, today, I’m tired. I’m a little sad. I need girly movies and puppy cuddles.
The Braves come on in less than hour. The lunch Joe is cooking smells highly edible. Today won’t be the worst one ever, but it’s a bit more complicated than most. (Even this blog is short, because my fingers refuse to do what my brain is telling them. What the heck, body?) Occasionally, I feel like a fraud, because I encourage everyone to try to make the best of living the chronic life- and, to be honest, occasionally, days like today happen. So, here I am. I’m being totally honest with you, and letting you know I’m drowning in self-pity today. I promise I’ll return to your regularly scheduled Crazy, Chronic programming soon. But, today stinks, and sometimes making the best of it means admitting that and having the best sad, lazy day possible.
Peace, love, and health, friends.
Does anyone know if “Pollyanna” is available on Netflix or Amazon Prime? I need an outside, sunny disposition.

Diagnosis: Christmas Brain

Y’all, it’s hit. I officially have a full-blown case of Christmas brain over here, and it’s not pretty. I’ll be honest, I’m making Clark Griswald look like a laid back guy in comparison. Here’s the thing- I thought I was prepared for Christmas. Two and half weeks ago, I would have told you I was right on pace to have everything finished early. Nope. Just nope.
In case you’re wondering what on earth “Christmas Brain” is, you’re friendly, neighborhood health blogger is here to give you a full symptom list. Please be aware that symptoms exist on a spectrum, and you may feel these symptoms to a greater or lesser degree than others with Christmas Brain. Also, I’m fairly certain that “Christmas Brain” can be experienced by a wide range of people- not limited to those who celebrate Christmas (See also, Hanukah Brain, Kwanzaa Brain, etc.).

“Famnesia”
Those presenting with Famnesia are likely to completely forget the friends and family closest to them regarding gift exchange. For example, one sufferer of “famnesia” has been known to wake up one morning and suddenly realize she’s married and her husband probably expects a Christmas gift. Famnesia may occur regarding one, several, or all friends and family. Sufferers typically have bouts of regaining memory- when their friends/family show up with a gift.

“Click-itis”
Others with Christmas brain may notice pain or discomfort in their “buying finger”- or the finger(s) used to click “Add to cart” on Amazon Prime. Click-itis often resolves when the sufferer finishes their holiday shopping; however, it is likely to resume when cases of Famnesia result in last minute gift giving needs.

Lack of Flying Candy Canes
Now, this particular symptom is often described using other (perhaps more colorful) wording. However, some sufferers have been known to say, “I do not give one Flying Candy Cane whether these gifts have bows on them or not.” When there is an overall lack of Flying Candy Canes, one may find themselves wearing yesterday’s socks, using an obscene amount of dry shampoo, and feeding one’s family from Papa John’s. (Because, at this point I don’t give one Flying Candy Cane about proper nutrition.)

Sugar/ Caffeine Cravings
Many sufferers of Christmas Brain notice they’re existing on little more than Christmas cookies and coffee (with frosted sugar cookie flavored creamer). When other symptoms hit their peak, sufferers will often self-medicate with more coffee, Christmas treats, and the occasional 5 gallon drum of popcorn. While these cravings offer little sustenance to help alleviate symptoms, sufferers are often incapable of and/ or unwilling to do anything other than indulge these cravings.

Impossible Expectations
Sufferers will often imagine themselves making homemade Christmas candy, assembling a 3-story gingerbread house, caroling with the neighborhood children, ending world hunger, and achieving world peace (and a puppy for everyone). These are illusions. The sufferer will do none of these things. He/she may babble incoherently for days regarding accomplishing these tasks. Caregivers should be aware that while the Christmas Brain sufferer is making plans to do these things, he/she will not make it around to them. Do not buy ingredients, scarves, or puppies in preparation.

This (quite tongue-in-cheek) list is not exhaustive, but it certainly covers a number of the symptoms felt by this exhausted elf. I love Christmas, and I am looking forward to spending time with the people I love most in this world. I also know (beyond a shadow of a doubt) that none of them expect the level of perfection that I tend to put on myself. However, the Christmas Brain struggle is real, and I’m secretly looking forward to December 26- the magical day when everything is half price, and I’m way too tired of shopping to care.

Merry Christmas, Happy Holidays, and Happy New Year, you Cotton-headed Ninny Muggins!

May our symptoms resolve by 2018.

Peace, love, and health.

Sleep.

I’m really tired. I’m always tired- this is hardly a revelation. But, if I’m being entirely honest, I have the absolute worst sleep habits ever. I don’t apologize for my strange relationship with sleep, though, because I have done everything within my power to help the situation- to absolutely no avail.
Here’s where I get around to making a point. Please, (please, please, pretty please, with melty cheese on top) do not cast judgment on the sleep patterns of those with chronic pain. Occasionally, I hear my chronic illness/ pain friends commenting about how their family/ friends have told them they would feel better if they would sleep on a normal schedule. While I agree that would be super fabulous- are you actually kidding me? Do you truly believe anyone chooses to stay up all hours of the night? Of course not. When you don’t/ can’t sleep your mind becomes victim to all the “what ifs” of your condition, relationship, and general life. Who would choose to do that? No one.
Now, don’t get me wrong. I don’t think chronic pain patients are the only people who can’t sleep. I know mental illness and hormonal changes affect sleep patterns. I’ve heard that my parents of newborn friends are rather sleep deprived as well. Joe has sleep apnea, and sleeps with a CPAP. It’s a sleep disorder. That’s another legitimate concern. I’m truly not trying to act like I’m the only person with a sleep concern up in here. (Although, Joe sleeps like a sweet angel baby once he dons that CPAP mask- as if there’s never been a sin to enter his blessed life, and I’m a little jealous.) I’m sorry. I really am. I feel your struggle, and I’m not trying to detract from it.
But, seriously. To all the people who feel I- or my other chronic illness/ pain friends- should just go to bed at a reasonable hour, please keep this in mind:
When I go to bed at night, I am quite literally putting myself into a device of serious discomfort. If I lie on my left side, I have to worry about my left shoulder dislocating. More specifically, I know my left shoulder will dislocate if I don’t move to another position quickly enough. If I lie on my right side, I’m lying on the hip that dislocates. Even if it doesn’t dislocate- it hurts. It really hurts. If I lie on my back, I lose feeling in my arms and legs- which makes my 37 nightly restroom trips almost impossible. (Seriously, you try walking on numb legs.) I don’t even try lying on my stomach, because my back spasms to the point that I literally can’t move to sit up. (Again, seriously inconvenient for the whole 37 restroom trips situation.)
I am a human rotisserie. I spend my nights spinning in place- hoping I will find a place that is comfortable enough to doze.
So, please. If you have opinions about what time sick people should go to sleep, keep them to yourself. It’s not easy. I assure you- we have tried every supplement, sleep aid, magic ointment, and tea. We are trying. We are combating pain, adrenaline surges, and the general fear of the unknown. It’s not easy, and I assure you- your advice about going to bed at 9 or turning off devices at 6 do little, if anything, to help. Please, give us some grace to figure all this out. It isn’t easy to live like this during the waking hours, and it when it’s dark, it gets even harder.
Chronic illness/ pain friends, please keep in mind that not everyone keeps our strange hours. I’ve found solace in online support groups during the wee hours of the morning when it’s impossible for my husband to be awake. I’ve had to learn that it’s okay if Joe is resting well during the hours that I’m trying (without success) to sleep. Joe has had to learn that it’s okay to let me sleep well past the hour that functional adults typically sleep. If you are living in a relationship that is juggling chronic illness/ pain, you have to learn to be patient while the other one sleeps. There are typically 6-8 hours of the day that one of us is awake and the other is not- just because our bodies run on opposite schedules. We are often quirky ships in the night. That is not only okay- it’s part of the balance of this life.
While we’re being very honest here, I’d like to also mention that my dog wakes me up for a drink of water (in which she must actually be walked to her bowl because she’s scared of the dark) at least three times a night, and Joe is a blanket hog. Those are very real situations in which the advice of healthy people is always appreciated. I’m considering making both of them sleep in the bath tub.
Peace, love, and health, friends.

 

What on earth am I supposed to eat?

Around Christmas last year, I realized a painful truth- I had fallen victim to leggings. How does one become victimized by leggings, you ask? I put on jeans and realized that without the comfortable stretch of elastic, I could no longer get into my normal size. Given that I truly hate shopping for jeans, I decided I would lose weight rather than buy more.
So, I began researching diet plans. I’m sure some of you are thinking, “Why don’t you cut back on junk food and start working out?” Well, it’s a little more difficult. First, my exercise possibilities are seriously limited by joint dislocations. Also, I needed a diet plan that allowed me to eat the sodium I need to maintain a sensible blood pressure. So, after a lot of research (and by research, I mean I consulted Dr. Google- not an actual nutritionist), I decided to try the low carb diet. It was great. I ate eggs and butter and bacon, and I still lost weight! My jeans fit. My husband was thrilled that we were eating meat and eggs for almost every meal. It was a beautiful thing.
Then, at the end of February, I had labs drawn and realized my cholesterol had almost tripled from December until then. After a fairly one-sided discussion with my cardiologist (where he reminded me that EDS and POTS are not exactly compatible with strokes and heart attacks), I started cholesterol medicine and committed to no longer eating meat.
Poor Joe. He went from eating meat at every meal to trying soy hot dogs (which he actually prefers over “real” hot dogs) and lentil shepherd’s pie. One week I was preaching about how our bodies need animal fat- the next week, I was telling him how pigs are slaughtered. This poor man has been the real victim in my dietary indecision.
Here’s what I’ve learned- everyone seems to have strong feelings about how we’re supposed to eat, but I’m not sure anyone actually knows what they’re doing. A few days ago, I posted in an EDS forum asking for advice for recent digestive issues. First, let me say that I was thrilled with the number of responses I received. Everyone was so kind and genuinely trying to be helpful based on their personal experience. However, I couldn’t help but laugh at the range of answers I received. Go vegan. Eat meat. Eat more bananas. OMG, don’t you dare eat bananas. Potatoes are evil. Eat all the potatoes. Eat some yogurt. Dairy will kill you. Eat low carb/ high fat. Eat high carb/ low fat. Then they started using words and non-words like “histamine, alkaline, and FODMAPS.” What in the world? Is everyone as confused as I am?
Remember a few years ago when we were convinced that everyone should be gluten free? I tried that for 5 months with very little success. But, at least that sort of made sense. Now, I’m clueless. Twenty-five years ago, I had to drink milk every day. I think there was some part of Parenting 101 in the 80s that said children had to drink milk or you had failed. Now? Milk is frowned upon. Get your milk from an almond or a coconut, people. But, as with all things nutrition, I can’t actually tell you why you shouldn’t drink milk/ eat dairy. It’s just a thing we’re saying.
I say all this silliness to make this point; no one has all the answers. There are those who will blame your illness, symptoms, mood, or hair color on poor eating choices. But, in fairness, I doubt that any two of those “food blamers” would actually agree about what is/ isn’t healthy. I’m trying to fuel my body the best I can. My jeans currently fit. (Okay, I’ll try them on again at Christmas to check.) I don’t eat meat- even though I just made a pot roast that smells delicious. The only thing that I can eat without getting nauseous right now is a baked potato. I eat too much cheese- even though it makes me feel awful. (But, seriously, y’all- cheese is delicious and worth the sacrifice.) I’m headed into football season, and I know that game day food options for a vegetarian will consist mostly of French fries. We’re doing our best- even when the “best practices” for healthy eating seem to be changing daily.
Peace, love, (organic bananas) and health, friends.