Two weeks ago I had an incident where I nearly fell at my daughter’s recital practice. I was fortunate to be with a very lovely group of dance mommies. They were kind enough to pretend they didn’t see the sudden inexorable hold gravity had taken on me, but it was still embarrassing. Especially considering I’d just watched Jasmine’s MUCH older teacher execute a beautiful series of leaps that I couldn’t do if you gave me a line of cocaine and lit my pants on fire.
The rest of the evening I couldn’t help thinking about how difficult it’s been to get into a standing position lately, and how very much I grab onto furniture when I walk. It made me feel even more awkward to realize that I knuckle-walk like a gorilla on household items that are in no way meant to bear the weight of a girl of my squishiness.
I talked to my husband about it that night. He and I together decided it was time for me to get a cane.
I fought it. I hated it. But I also knew what I would say to a patient walking the way I have been. I would reccomend a cane immediately and give them a stern lecture about fall risks if they resisted.
Robert spent a long time talking to me about how a cane doesn’t make me less attractive or strong. He reminded me that I wouldn’t need to use it every day, that some days I walk like someone who’s never even heard the word “fibro.” When that didn’t help, he did a thing that only he seems to be able to do.
He went online and found me a sword cane.
I was joking when I first mentioned that the only way I would carry a cane is if I were packing a sword inside.
He found this little gem on Etsy.
It came last week. It is a cane with a FRIGGIN’ SWORD INSIDE.
When I shared this little factoid on a fibro humor board I frequent, the response was almost completely uniform cries of “YES THAT IS A THING I WANT.” Almost uniform.
Somehow, a few people seemed to be concerned that I wasn’t aware a sword was a weapon, and by concealing it inside a cane it is a (dramatic musical sting) concealed weapon.
I live in Texas. I’m a Rennie. I’ve owned swords for years. I’m aware that it’s not a thing you want to carry just anywhere. The sword cane was to make me feel better about the transition.
I know at least some of these buzzkills were trying to be nice. I think. But they seemed to be under the impression I was intending to unsheath it in the grocery store and run around skewering police officers. Apparently I come off as a person that will do that kind of thing, because people seem to respond to me like that when I get excited about something. Like, a lot.
Not one to idly dismiss the concerns of meddling strangers, I found and ordered a more everyday, utilitarian type of cane. It’s coated in botulism and filled with lead BB’s, perfect for swinging at doctors who think fibromyalgia is a synonym for laziness. It also folds up so it will fit in my purse!
And it has pretty butterflies on it!
Take care of yourself. You’re the only YOU you’ve got.
Yes, it works. But keep reading, because it’s important.
I’ve had burning curiosity about CBD for a while. Since now it can be cultivated nationally, I was tickled to get the chance to review a topical CBD product from Simply Transformative (and its sister site, Honey Colony). The literature on their site points to a group of individuals who are so much more interested in detail and quality than I will ever be. You can read about their Morpho spray here. I could spout a lot of words like “bioavailability” but the bottom line is this: Their spray is high quality and has a few extra homeopathic ingredients that are touted as specifically helping Fibromyalgia symptoms. I wanted to see if it really worked.
The box arrived promptly, and the company provided tracking through FedEx. The bottle is a reasonable volume, and even though I used it on everything I could possibly think of, a little bit goes a long way. The smell is light, a little bit like ginger, and the liquid is thin and has an orange tint to it. I didn’t notice it staining clothing but I don’t wear a lot of light colors. I would beware if you are wearing white.
As I mentioned, my brain has been itching to learn what CBD can actually do firsthand. When I got the bottle, the first thing I did was spray it on my lower back, hip, and knee on the right side, since that is where my body has decided it’s going to express most of its pain right now. I sprayed it on my husband’s back where he has all kinds of exciting herniations and knots. After about 20 minutes, I noticed that the nagging pain on my right side was gone. Not better. Gone. My husband’s back pain (which hadn’t been relieved by anything to that date), experienced a 2 to 3 point reduction on a 1-10 pain scale. Not much, but it’s been ridiculously hard for him to find any kind of relief. But it didn’t stop there.
I was asked to specifically test this stuff on my fibro pain, and while I’m well aware that Fibro-Monkey causes all manner of chaos in the body, I know exactly what they’re talking about. That steak-searing, burning pain just under the skin that drains all your strength and makes all the doctors roll their eyes.
Look. Even though I’m super excited about this product, I’m not going to tell you it absolutely took my fibro pain away. What I CAN tell you is that I consistently experienced a 2-3 point reduction in that particular pain. That may not sound like much to someone who doesn’t have fibro, but let me tell you I was grateful for it. It made me comfortable enough to sit still on a day when the pain was like a cattle prod, first driving me to move and then forbidding it. That kind of pain can make a person verifiably insane after a while, and it’s usually the last pain my oral pain meds touch. Normally by the time I’m medicated enough to feel a reduction in fibro pain, I’m ready to hug the toilet. The Morpho spray has reduced my need for pain meds to half my previous dosage.
The test I wish I hadn’t had to do
There’s one more thing I want to share about this spray. It’s hard for me to write about, but it could be extremely important to your decision whether or not to try it. You may be reading this thinking “Yeah, well, the placebo effect can do some wonderful things.” I’d be thinking the same thing, and no WAY am I shelling out $40 for a placebo.
The day after I got the Morpho spray, I lost my Emotional Support Animal. She was 16, and so sick. I used meloxicam (kitty strength) and a pet-specific CBD product to help maintain her quality of life. She seemed more comfortable at first, but as the days of her sickness wore on it lost its effect. Not to mention she began refusing it, and have you ever tried to stick a syringe or dropper in the mouth of an unwilling cat? It ain’t pretty, and if your time with your kitty is drawing to a close it’s a hard thing to make yourself do.
The last night she was with me, before I went to bed, I sprayed a little of the Morpho under her lips. She didn’t seem to mind the taste, and she went from periodic straining and crying to relaxed dozing. She didn’t act dopey. She still kept her paw in my hand and responded with pleasure to her favorite ear scratchin’.
The next morning I woke up to my faithful friend in the midst of a seizure. I screamed for my husband. He held her to keep her safe while I grabbed the CBD. The Morpho was closer at hand than the pet CBD, and to be honest by this point I had a lot more confidence in it. Though she was jerking and straining, it was the easiest thing in the world to lift up her lip, spritz some of the Morpho underneath, and massage it in. Thirty seconds, guys. That’s how much time it took for the seizure to stop.
I’ve been a nurse for 16 years. I’ve seen hundreds of people die, watched them suffer and wish to God in heaven I had something to stop their pain and make their journey easier. I’ve held the most powerful pain medications known to man in my hands and watched them have little to no effect. I have also never seen anything stop a seizure that fast (short of IV medications that hit your nervous system like a Chuck Norris style roundhouse). I would have killed to be able to have something like the Morpho spray in my pocket when I was a nurse.
So no, I’m not falling victim to the placebo effect. I’m a professional, and I know when a pain measure works. I am in no way suggesting that you use Morpho in lieu of physician-prescribed meds. I’m not suggesting it cures all pain and sickness. But I watched it make a dramatic difference in a process that I’ve watched a hundred times, gently and completely bringing comfort and ease. The best thing I can say about this spray is that it gave my friend the relief she deserved.
Nitty Gritty Numbers
In case you need things broken down by the numbers (or just don’t have the time or inclination to read my full review—punk) here’s a summary of how well Morpho worked on each of our different pains. I came by these averages using a 1-10 pain scale because by now it’s a hindbrain function for me to rate pain that way. Pain reduction was averaged from 3 or more applications. In our experience, 15 minutes is about the time the topical spray takes to work.
Hyperalgesia (Normal pain amplified by Fibromyalgia, e.g. bumping into a wall hurts like someone gave you a good two-knuckle punch): Reduced pain by 3-4 points. However, it didn’t do much to prevent the pain, and since I’m pretty accident-prone I would have to carry the bottle with me all day. Also one bottle would only last about 34 minutes if I sprayed it on every time I bumped my bootie.
Muscle Pain: This is one my husband was able to help me with. Between the two of us we were able to gather a LOT of data about muscle pain. Morpho reduced it by an average of 4 points with consistency.
Joint Pain: This was where I had my best results, as the Morpho usually reduced my pain to a 1 or 0. Anyone with chronic pain knows that is the rare unicorn of medication.
Fibro Burn: As stated above, 3 point reduction in pain consistently.
There was nothing noted in the way of side effects. I didn’t even experience an increase in appetite. It dries clean, not sticky, and the scent is not a man-made fragrance but a by-product of the ingredients (it actually contains ginger and lavender). That means if you have fragrance allergies, it’s less likely to activate them. The spray is glycerin based, meaning that it doesn’t sting or itch like something that contains ethanol, isopropyl alcohol, or mystery sludge at its base.
I’m running low now, and I’m definitely ordering another bottle. $40 is a lot of money in my world, but it’s also a lot of pain relief. I never did have a lot of faith in most topical pain treatments, so I was skeptical going in, but I certainly got my money’s worth many times over.
A final note in the interest of full disclosure: If you decide to order this product and mention my name at checkout, I do get a smidgen of money, honey. It would be nice, but frankly I don’t care if you do or not. My mission with this blog is to help Fellow Fibro Fighters with whatever talents I happen to have, and I’ll keep doing it regardless of whether I turn a profit. But if you’re gonna order it anyway, I wouldn’t mind a little name dropping.
If you have any questions I’d be glad to answer them in the comments or on my social media pages.
Take care of yourself. You’re the only YOU you’ve got.
So I did a quick interwebz search last week for “best long-lasting drug store lipsticks.” I love drug stores for makeup, especially places like CVS. Heck, even the Wal-Mart beauty department is a deeply rewarding place. You can get great cosmetics and skin care if you’re careful.
I wanted to do a review today on the top result for my search, Burt’s Bees lip color. If you’re familiar with Burt’s Bees, you probably already love them. They’re a cool company and put only good stuff in their products.* My mouth is prone to cracking at the corners, and their lip balm is the only reason my smile doesn’t look like Heath Ledger’s Joker.
Now I’ve got another reason to love them, because their lipstick is great. As much as I enjoy putting on makeup, I have no patience for makeup that needs to be reapplied again and again. Like most of you, I’m lucky if I can summon the strength to put it on once. If, by the end of the day it looks like my face melted and slid to the left, it’s just going to have to stay that way until I can get it washed off. At that point I take the offending oozey-slidey makeup and put it in my ever-growing cosmetics graveyard. Ditto for anything that makes my skin feel dry, sticky, irritated, or just plain gross, because it’s an all-day distraction that my addled brain can’t afford.
So when I read the rave reviews about BB lip color I hobbled down to CVS. The only issue I had was a (slightly) meager color selection, but the shades were all pretty neutral, so there should be a color for everyone.** I got Lily Lake, but beware: The pics on their site aren’t really true to the shade. Lily Lake looks purple on the site, but it’s actually a lovely rosy neutral color. Pick your first tube from a physical store if you can help it.
Honey, this stuff feels amazing. It’s not thick or waxy, it’s not slimy or greasy. It’s just a thin, moist layer, like lip balm that’s had a few minutes to absorb. And since I was specifically looking for durability, I applied it right before I ate my morning yogurt. Then, once I’d licked the spoon clean, I gave my heathens both big ole’ smacking kisses on their foreheads. My lips looked the same before and after these activities.
But wait, there’s more. The following is a scale I’ve never used on a makeup before, but considering the facts of a chronically ill life I’m pretty sure this will be meaningful to you too. A few mornings ago I was feelin’ foxy and put on a smidgen of makeup. As per usual when my makeup is looking good I immediately started vomiting.*** Oh yes, my stomach contents, my innards, and a good sized chunk of my soul came out with great violence. My mascara looked like tribal cheek paint, my foundation was ruined, one eyebrow was vertical three inches below the other. And yet my lips were still soft and colorful. Even after the post-Vomageddon tooth brushing and mouth washing, Burt still had me covered.
The other appeal is the price; it’s right around $10, which is about the maximum I’ll pay for a lip color. As previously discussed, I’m cheap like Scrooge when it comes to the makeup I buy. Most of the hypoallergenic/natural ingredient lip colors are a hair out of my price range, but I think me and Burt are going to be a match made in heaven.
Take care of yourself. You’re the only YOU you’ve got.
The Chronic Mama
*To learn more about Burt and his bees, check out the documentary here.
A lot of people don’t know about my Great Grandmother, Emma. She was a precious woman who grew up in a North Texas “children’s home” (orphanage) during the great depression. All my childhood I listened to her tell stories of Buckner and the other children there. We all loved to hear her talk about the very different world in which she grew up. When she was older, she worked in the Receiving Home where new children could be acclaimated to life at Buckner. The children’s home was so much a part of her life that when she was dying, she told us the children from the home had come to get her. The little girls that she brought into the family there at Buckner came to usher her into eternity. That’s the legacy of Emma, my mama’s mama’s mama.
Buckner was evidently a good, solid place to grow up. Gran Gran had a thousand memories there, and apparently others did too. The Buckner Alumni produced a cook book filled with recipes from the children that had grown into adults there. Any time there was a special occasion in my house, out came the Buckner cook book the way some people bring out Betty Crocker or Julia Child. I’m fairly sure there are still crumbs from my very first ill fated attempt at baking cookies.
On Halloween, we met a family that lives just down the street from us. Our little heathens played together Friday, and yesterday we had dinner together. The lady of the house and I share a love of cooking. We talked Friday about how cooking connects us to the women in our family, and that’s when we decided we should have supper. She brought dishes that she grew up with (her mother is from Belize and her dad is from El Salvador, so I’m REALLY excited to see what she comes up with). She asked me to make a dish from my family.
So naturally I busted out the Buckner cook book. It’s falling apart. The pages are scribbled with notes from 3 generations of women who raised me, taught me to be a Jesus-loving southern lady, and coached me even when I was an annoying little turd.
I wasn’t prepared for the overwhelming sense of belonging and the tender memories opening these tattered pages brought on. I love old things. I love anything with human history, anything that’s been used and loved. Items that have been used for decades almost seem to exude a presence, a glow from the long contact. The fact that these recipes connected me to the women of my own family was a little overwhelming. I could feel the memory of my Gran Gran as clearly as if she were standing over my shoulder. Or more accurately, behind my back. Gran Gran was a teensy tiny little lady. I was towering over her at ten years old.
I measured and mixed, all the time hoping the dish wouldn’t come out tasting like old wet armadillo butt.* This was especially important to honoring the traditions of my ancestors considering that we had company coming over, and the code of Southern Hospitality is inviolable. If the casserole was gross, I’d have to find something to serve in its place, and that would take energy I just didn’t have. It was touch and go there for a while, and I gotta admit some pretty dire scenarios flashed through my head. But in the end, I had a nice smooth broccoli cheese casserole with gold-toasted almonds on top. Did I take pictures? Of course I didn’t. Do you think my Gran Gran snapped a picture of her food every time it came out of the oven, sizzling and fragrant and golden brown? No ma’am. Do you think my granny snaps a picture of her perfectly burned Bachelor Button cookies every time she pulls out a batch? Not a chance. We have absolutely zero pictures of my mom’s pot roast. I made the decision to honor that ageless tradition that….Okay, I actually just forgot. But it turned out lovely anyway, cheesy with tender broccoli and just enough crunch from the almonds. I’m sure I will be making it again and I’ll try to remember pics before someone dives into it.
And how was the evening, you ask? Well, they left around 1am. My teenager even forsook his computer and headset to come converse with us. I think Gran Gran would have smiled on that. She would have loved my kids very much, just like she loved all of us. I had the privilege of knowing Gran Gran until I was 16. I also had the supreme honor of helping to care for her in her last days, until she finally let the little Buckner girls walk her Home one last time. It was nice to be able to visit those memories, and even nicer to be able to write them down for you guys to see.
Also, good to know my broccoli cheese casserole doesn’t bring shame unto my family. I’d have to leave out an offering of sweet tea to appease their restless ghosts.
*Armadillos are a real thing. It came to my attention years ago that some people in the northeast believe that the armadillo is a myth, like a jackalope or a unicorn or a good fruit cake recipe. This is not, in fact, the case, as evidenced here
Guys, this blog has stuck around in my life longer than most of my doctors. At first it was just a little tool I had to keep the voices quiet and stave off the imps of self pity and isolation. Somewhere in there I fell in love with an invisible, silent audience. I learned that there are more people out there like me, broken and brave and stubbornly doing the impossible every day because they have no choice in the matter. If you’re new to this site, go take a look at some of my other posts before you read this so you’ll know I’m not a complete drag.
Earlier this month I exchanged guest blogs with a really cool Chronic Chick named Amber over at theworldseesnormal.com. Since it was a guest blog, I wound up distilling the tao of my existence into a couple of pages. What I ended up with was a nice introductory blog for anyone on my page, so like any good mom, I’m re-purposing it. I don’t mind telling you, revisiting some of these memories in enough detail to write them down was severely painful. It was hard as hell to write and I’m not doing it again, so here it is, in black and white.
I was diagnosed with Fibromyalgia when my daughter was two. I’d been having pain for a few years that no one could find the cause for. I ran the gamut of super-expensive diagnostics that diagnosed precisely nada. I was put on heavy opiates long enough to become completely dependent, then told I was a drug seeker and denied the medications that were allowing me to function even as they made me act like a complete nutcase. I took myself off opiates and learned to work through the searing pain. Then, I got pregnant and gave birth via c-section. I lost a lot of blood, and my energy level never quite recovered. For a long time, I thought I just needed better nutrition. I thought I needed to work out more. I thought I was just going through what all new mothers went through. After all, I was caring for an infant in the daytime and working full time as a charge nurse at night. My (step)son is older, and he helped a lot. Actually, a lot more than he should have had to. There were so many days when I seemed to bleed pain and fatigue, when no matter how I tried I just couldn’t make my body move. Work became more difficult. I went to the doctor and was told I was too fat and given the most cursory of examinations before being dismissed.
Then one night, a co-worker tapped my shoulder to get my attention. Though the touch was light, it felt as if someone were digging a spike into my shoulder. That spike stayed there for over an hour. That was when it clicked: I have Fibromyalgia. One of my oldest, most faithful friends has fought the fibro fight for many years, and I recognized the pain from the way she used to talk. I looked up symptoms, found a new doctor that actually looked me in the eye when I talked, and told her my suspicions. She thoroughly examined me, a lot more thoroughly than anyone else. She also actually looked up the diagnostic criteria for fibro and began checking tender points. I had a diagnosis, but I didn’t know what to do with it. There was no cure. The few meds that sometimes work for fibro, didn’t. I still had no energy, and no matter what variants of a healthy diet I tried it didn’t change. Caffeine didn’t work. Supplements didn’t work. I had to get through day by day, hoping that I was doing enough to keep my kids happy and healthy.
The holidays were especially hard. I’d always loved Christmas, but now I started to dread it. There was always pressure to work more, to do more, to take the kids more places and somehow instill the air with Christmas magic. Most of my memories around my daughters’ first few holidays are through a blur of exhausted tears. I remember one Christmas eve in particular. I was getting ready to go to work. I was going to put my daughter to bed, go work eight hours on my feet, come home, take heartwarming pictures of the kids opening presents, dress them perfectly, take them to Christmas festivities with family, smile, be engaging, make memories, live in the moment, and record all the Christmas magic for the years to come. Then I would take them home, get an hour of sleep, and go back to work again. I sat down beside my daughters’ crib, and I realized that I was too weak and tired to tell her the story of the first Christmas. My body throbbed so badly that I couldn’t form the words. I sat down on the floor, there by her crib, in the soft glow of twinkle lights, and wept because I couldn’t tell my daughter my favorite story in the entire world.
I’m not gonna lie, I was feeling pretty sorry for myself. That low place got way too familiar as time went on. I found myself on the floor more and more often, too weary and in pain to take another step. And I’d like to tell you that I always managed to pick myself back up, but the reality of chronic illness is far from that.
However, I discovered something when I was there on the floor (besides the cat’s toy stash under the fridge). I discovered I could get stuff done from down there too. I discovered how delighted my little girl was to have mommy on the floor with her and her blocks. I noticed my son could talk to me about his day just as easily when I was lying on the couch cradling a heating pad. I found out that in exchange for an extra hour of video gaming, my son would sweep and mop the kitchen while I took a nap. I realized if I went about it correctly, I could prepare dinner almost completely sitting down.
So that’s what I started doing. I figured out ways to do things sitting down. I began timing and scheduling my day to use my energy as efficiently as possible. I started showing my husband the new ways I had learned to do things. I talked to other parents with chronic illness, and I discovered they, too, had ingenious ways to get things done and be good to their kids.
At the time I had a little blog where I would chronicle the funny things that happened around my house. Through the blog I was beginning to find that if I could re-frame something unpleasant in a funny way, it was much easier to avoid the mires of self-pity that made life one long trip to the dentists’ office. The parents around me that were as sick as me or sicker seemed to have above-average senses of humor. They limped their way through life with determination and a steadfast refusal to take themselves seriously. These superwomen in comfy clothes somehow got everything done.
I watched all of this from the perspective of a nurse who has spent her career learning about controlling pain. Over time, the carnival that is the inside of my brain began to slowly assemble the data it was being fed. The new coping mechanisms for parenting through pain aligned themselves with the principles I learned in nursing. See, nursing is another field where weak and tired humans are asked to do the impossible flawlessly without a break. My body and mind have failed me, and I’m not able to be a nurse right now. But I did the impossible then, and I’m still doing the impossible, just like every other CI parent on the planet.
If you think of your energy as a monetary budget, you can more easily visualize this. A normal person has an energy budget like the bank account of an upper middle-class American. Regular deposits are made, and there’s a backup savings account to deal with any emergencies. Their resources aren’t unlimited, but it’s pretty much enough to get them through the ups and downs of normal life. When a car breaks down or a home repair is needed, they take a little from their savings accounts, maybe trim up their spending a little, but they can continue without much of an interruption in their lifestyle.
When a person has a chronic illness, their energy budget looks a bit different. The resources in the account are meager, and there’s no savings to cover overdraft. It’s as if they’re on a fixed income, with stingy little deposits coming at irregular intervals. It’s from this perpetually depleted resource we must draw to find the energy to make it through the day.
What about a parent with chronic illness? Okay, so picture that skinny little sad bank account, but with a big ole’ student loan payment being billed with merciless regularity.
And yet, if you’re reading this, if you’re a parent with chronic illness, you’re doing it. You’re doing exponentially more with exponentially less. Maybe you don’t know how you’re doing it. Maybe you think you’re doing a lousy job. But you’re doing it.
So going back to the “energy budget” concept. If you’re a sick parent, you have to make that budget stretch, just like every other budget in your life. That doesn’t mean that you and the people around you have to have less. It means that with a little creativity you can do more than you thought with less than you dreamed.
The first way to stretch that budget is to plug all the leaks. Leaks are parts of your daily routine that use more energy than they have to. Leaks are things healthy people usually don’t notice, because their funds are being regularly replaced the way they should be. Parents in pain can’t afford to have even a drop of their precious strength wasted on something that no one wants or needs. If no one notices or cares about having their clothes ironed, get yourself a bottle of wrinkle releaser and go take a nap! If your family doesn’t want complex home-cooked meals every night, order some pizza and give them vitamins.
Leaks can also be unfulfilled needs that we tend to ignore in our bodies. Hunger, thirst, fatigue, and pain can all cause a low-grade drain to our energy. Be vigilant about taking care of yourself. Medicate for pain or anxiety before going into intense situations, especially ones where your kids need you to be at your best.
Remember that although kids are whiny, instinctively selfish little people, they are also psychologically programmed to love you more than anything on the face of the planet. There is no love more complete, more selfless, than that of a parent and child. Let that love fill in the gaps when you can’t be perfect. They may be disappointed with canceled plans or frustrated with the differences between their lives and the lives of their friends, but as long as you keep a constant background dialogue of love, you can get them and yourself through anything.
Be honest with your kids about your health, especially when it has you feeling down. Hiding things from little ones doesn’t usually end well, so just be open about your struggles. My son began asking questions when he was about eleven or twelve. By then I’d begun to need more help with things I’d always insisted on doing myself, and he was noticing. So while I sat with him and taught him to help around the house, I talked to him about my body and why some days it seems fine but others I have trouble getting around. It was hard at first explaining it in a way that made sense to a kid, but I just slipped it into a hundred different conversations at every reasonable opportunity.
And it helped. I don’t expect every kid to be like Alex. They’ll have varying degrees of difficulty understanding and accepting the concept of chronic illness. Remember how hard it was for you to understand the permanence and indiscriminate meddling of your illness. But as he grew, he saw the truth of what I was telling him, and that was all he needed. He saw that I was trying my best. He saw that I was learning to deal with things differently. He also saw how deeply it touched me when he helped me. Even though he was required to do his chores just because his dad and I believe kids need chores, I thanked him often and from the bottom of my heart. When he couldn’t do his chores, or I helped him with them, I still told him how important he was to me. He knows my love for him isn’t dependent on what he can do for me, but there is none of the helplessness in the face of suffering that I see from other kids his age. He’s 15 now, and let me tell you, that kid walks tall. He has the same insecurities of any teenage boy, but he is secure in the fact that he can help the people around him. He’s compassionate, because he knows that everyone you see is fighting a private battle. He’s seen people criticize me, call me a hypochondriac, rail at me for using a handicapped spot, and tell me how delightfully easy my life is. He’s also seen how hard it is for me to do the simplest things. He’s seen the moments I don’t let most people see, moments when I give up, the times that I’ve broken down, the days I lash out at the people around me because of the pain inside me. He’s also seen me get up, make the most of it, choose to be happy, and find the joy in life. Kids watch us, and even if we choose not to tell them the truth with our words, we tell them truth with our day to day lives.
Encourage creative solutions. This one is difficult, especially for someone with less energy than the average bear. It’s also galling for a Southern girl who was taught to do everything I was told with an immediate and enthusiastic “Yes ma’am!” or “Yes sir!” But I’ve learned over the years that not only does creativity trump intelligence for problem solving, it also breeds enthusiasm and engagement. Anyone who has contact with the up-and-coming teenagers of the current generation knows that they don’t lack intelligence or work ethic, they simply lack enthusiasm. Well, let them solve their own problems. I’m not kidding. I’ve seen kids who’ve had their problems solved for them. While they may be excellent kids and turn out fine, their first instinct when they run up against a problem is to run back to their parent. My solution is to stand with my kids, shoulder to shoulder, and let them take the lead in working out a solution. Rather than expecting immediate, unquestioning, and exact obedience (which, let’s be honest, isnt’ that realistic anyway), if they come to me with a different solution they’d like to try, I do what I can to encourage it. Of course, there are situations where for safety or other considerations they need to do what I ask without negotiation. For these times, I tell them something along the lines of “Please just do exactly as I ask. If you think of a better way to do it, we can talk about it after and maybe try it next time, but this time just do what I’m telling you.” (or, in emergencies, saying the word “NOW!” at the top of my voice seems to work out fine).
Of course, both of my kids are arguers. They’re really, really intelligent so they have a lot of questions, and it took me a long time to learn that arguing is how they learn. It’s how they assert their independence, and how they find their limits. They would be that way no matter what my parenting style, though (I know because initially I tried the “do what I say when I say it without question” approach. The result was not a sliver less arguing and a lot more frustration and tears on all sides). I don’t have the strength to work against their nature, especially not when I see so many good and noble traits in them. So go with the flow. Figure out what YOUR kid needs, and put your precious energy into those specific needs.
Be patient with yourself and them. I was never called patient in my life until I married my husband and had two kids who both have anxiety and ADD. Did I mention my husband also has chronic pain, anxiety, and ADD? Lord help us. But I learned that in the battle to conserve energy, it is ALWAYS less draining to keep my cool than to lose it. It always takes less of my finite budget to take a deep breath and let things roll off. Slamming doors hurts my hands. Yelling makes my muscles hurt. Stomping around angry causes hip pain.
Please don’t think I’m some kind of level-five zen master who levitates through the house on a cloud of love and pixie farts. I’m a lunatic some days. But through that lunacy I’ve learned that love, honesty, and creativity can patch those energy draining holes and give you better access to what few meager resources you have.
Thanks for letting me share my story. You can email me at firstname.lastname@example.org or message me on Facebook under The Chronic Mama. I’m less fluent in twitter-ese and instagram, but if you don’t mind waiting for me to remember those platforms exist and check them you can contact me there. Twitter is @riskywords and IG is The Chronic Kitchen. Everybody take care of yourselves. You’re the only YOU you’ve got.
Since it’s Blogtober (yes, apparently that is a thing) I went out (read: online. Silly rabbit. I don’t actually leave the house) and met a friend. This friend has a lovely blog over at The World Sees Normal. She’s also a recovering nurse and she’s a straight up warrior. Read her story here, then pop on over to her site to read my guest blog on her site!
Where did this journey all begin?!? Honestly, somewhere in my childhood I would guess. I was always one of those kids that picked up even the slightest bug. Always sick. Never thought much about it though until I got older (in High School) when my friends started to notice that I was sick way more than they were and started to ask why. At that point we didn’t have any answers and wouldn’t for many years. Looking back now we can see where it all began. My junior year of High School I was hit with a case of Mono that just wouldn’t go away. It last for SIX MONTHS, at the time we didn’t think much of it, now we can see that the never ending case of Mono was most likely my first Lupus flare.
Lets rewind and take a look at the journey that got me to where I am today. In the of Spring 2012 I was living the life that I had dreamed of. I was working as an RN, serving as charge nurse most shifts and helping to train nursing students and new co-workers. I loved my job, I loved that I was able to work three twelve hour shifts a week and that I had a job with direct patient contact. In January 2012, I was hired as an adjunct Clinical Instructor for a local nursing school and I was so thrilled because that is something I had wanted to do, even before I graduated nursing school in 2007. I also started working on my Masters in Nursing Education in January 2012, and I was so excited to be moving toward my goal of teaching in a nursing program. My life was on track and I was happy with my the direction it was going.
Sadly, in February 2012 all that changed. I was hospitalized for a week with a respiratory infection that no one could figure out. Looking back I can see that this was just the beginning of the decline in my health. I had to be off work for a MONTH at that point because I just couldn’t breath, despite all the treatments we tried. On top of having trouble breathing, I was also always exhausted, and was dealing with so much joint pain. More pain than I had ever experienced before. That July, I was diagnosed with Systemic Lupus among other things. Though troubling and scary, it explained so much. It explained why I had been feeling the way I had and the symptoms that no one could ever figure out that I had experienced over many previous years. In the months and years following my Lupus diagnosis I was also diagnosed with so many other life altering diagnosis that made it hard to see any kind of future for myself. Just to name a few, I was diagnosed with Fibromyalgia, Endometriosis, Interstitial Cystitis and other chronic illnesses. Not to mention the migraines that years later morphed into hemiplegic migraines. Following the Lupus diagnosis it became clear that I wasn’t going to be able physically to continue working as a nurse on the floor. And due to my health I not only had to leave my job, I had to step down from my teaching position with the nursing program before I even started. And I had to drop out of the masters program that I had only just begun. To say the least I was crushed. I just couldn’t understand why God would allow these things to happen and what I had done to deserve so many trials.
At that time I honestly couldn’t see past the diagnosis. I couldn’t understand why my ability to do the things I dreamed about was being taken away. My job, furthering my education and the ability to have children. As I mentioned above I was also diagnosed with endometriosis. Having Endometriosis along with Lupus has made it so I will never be able to carry my own baby, which is something I have always wanted more than anything! As long as I can remember I have dreamed of being a mom and all the things I would do with my children. And all that has been taken away. I do hope to adopt one day if I get to a place where I can care for another person. At that time though I couldn’t fathom what I could have possibly done to deserve what was happening.
In the months (and honestly even years) following my diagnosis I struggled. I struggled to find my place in my workplace. I struggled to find my place in my relationships (family, friends, romantic) as I felt like nothing was the same even when others didn’t see it that way. I lost friends and relationships that I thought would be lifelong all because of my health. It was something I was going to be stuck with forever and couldn’t walk away from and was having a hard time accepting. And those people did the one thing I wished so much that I could do. They threw up there hands and walked away. Probably around 6months to a year in I began to see something had to give. Something has to change. I couldn’t continue going at things the I was because something had to give. So I searched and searched for a place I could go for support. Someplace I could go and talk to others who were living through the same issues that I was. A place where I could go and openly express my feelings without being judged, and also a place where I could find information on the issues I was dealing with. I looked for local resources and online resources, but I couldn’t find a place where I really felt comfortable. After spending time searching, it became clear to me that I was supposed to create the place I had spent so much time looking for.
After I realized that I was supposed to create this place of solace and education that I had been looking for. After I finally came to the realization I spent a lot of time researching support groups & educational groups. I wanted to find out what made these groups successful, and what made them flourish. So I did just that. I recruited a few of my fellow Lupies (aka someone with Lupus) to help me and we created a Lupus & Chronic Illness Support Group on Facebook. A group we called Lupie Groupies. My friends and I created a group where those of us dealing with chronic issues could go and be real. A place where judging others for their thoughts and feelings is NOT allowed. A place for those who were newly diagnosed, as well as for those who have been diagnosed for decades and everyone in between. A place to find education on their conditions and as well as information on treatments.
At first we were a very small group, but over the last 4+ years we have grown to over 600 members. When I started this journey I could never have dreamed that I could develop a support group that would grow to be so big! I have received such amazing feedback over the last four years from people in this group. People telling me that the group has given them hope, and that they have made life long friends in the group.
In 2016 I began having Hemiplegic Migraines (stroke like migraines) that took over my life. I had a migraine literally everyday for 7 straight months. And as my mom tells me I became a champion puker (not a something I ever wanted to be a champion at). It was awful. Finally after being seen at the Mayo Clinic I was able to get some relief. But I had to quit my job. At the age of 31 I turned in my resignation and left a job I thought I would be in until I retired. And sadly since I had no income I also gave up my freedom in a sense. I had to move back in with my family. Don’t get me wrong I am so GRATEFUL for them and them letting me move back home. It’s just ideal at 31.
I took off six months per the recommendation from the Mayo Clinic and decided to try to go back to work. I found a great privately owned company that was so great to me. They should have fired me 12 times over before I finally was let go because honestly I was off work more than I was there and I only worked two days a week. But in Aug of 2017 I had my first seizure and had an accident totaling my car and ending my nursing career for good. This time giving my resignation was harder because I knew it was for good. So I knew I needed to find something to pour my heart into. And thankfully I had started this hobby blog in early 2017. So I poured my soul into my blog. And I found opportunities to work as a patient advocate where I work alongside other amazing people who are also going through daily struggles. Which encourages me to continue my fight.
Don’t get me wrong I would still give my right arm (just for reference I am VERY tight handed. My left hand is more for looks than function) to be able to go back to work. I am still mourning the loss of my career. I know mourning may sound like a strong term. But for me that’s the best way to describe it because nursing was something I knew I was called to do from a young age. So having to give that up after only working for 11 years is heart breaking. A couple times a month when I am having a really good day I have that thought of “I bet I could go back to work, maybe in an office and not a floor!” But then I remember just how ill I am and how that’s not possible. If you would have told me ten years ago that I would be back living in my parents basement, fighting multiple chronic illnesses, with no car (thanks to that seizure last year and no money for a new one) and that I had filed for disability. I would have told you that you had lost your ever living mind. But it’s true. That’s where I am at this point in my life. And as much as I am not okay with it, I am okay with it.
I know that makes no sense at all. But the last six years since my diagnosis hasn’t been all bad. I have found my tribe, those people in life that you know were meant to be there and will be there forever. And most of them, not all but most, are fellow spoonies. Because as much as I hate to admit it, friendship with a fellow Spoonie is just easier sometimes. Not only can I say that I am lucky enough to have found my tribe but I feel like I have been blessed with a second calling. I don’t feel like everyone is lucky enough to get one and somehow I got two. Well, maybe 1.5. I feel like I was supposed to get these conditions so I could use my medical background to teach, spread awareness and provide support to others in similar situations. And I love it!!! Do I wish I could make a little more income from it?!? Ya!!! But maybe someday!! Right now I just feel so blessed that I am able to take my horrible health and turn it into a positive. If someone would have told me this is where I would end up I would have laughed. But honestly I am pretty content. Do I miss work? Yes, yes, a million times yes! But I truly feel like I have found my calling! I was put where I am to be a resource, a friend, a blogger, a leader to those who are in similar places. I was put where I am for a reason and I have had to adjust to that and learn to live in that place.
Amber is a blogger and chronic illness advocate. Check her out at theworldseesnormal.com!
So the scenery from the Denver airport didn’t look quite like I thought it would. We took a shuttle from there to the car rental place and although there was definitely some serious Purple Mountain Majesty, it was faaaaaar in the distance. It didn’t matter. The air was cool and dry instead of hot and humid, and that was really all I needed to be happy with my environment. Jenn had volunteered to drive through the course of the trip since she’s familiar with dark magic like roundabouts and hairpin turns. The drive to Avon was about two hours, give or take. It only took about half of that for the scenery to change from distant mountains to ALL UP IN YOUR BIDNESS.
We stopped at the halfway point for some food, and I tried my first bowl of Pho.
No, I never have tried Pho, and it was the most delicious, life-restoring thing I’ve ever put in my mouth. I wasn’t crazy about the noodles, but then noodles aren’t really my jam. The broth, though. Shut up. And then all the fresh meat and veggies in there? I was in heaven. We ate far too much, both of us, and topped it off with Boba tea, which is my favorite drink of all time. Even though it’s technically a snack. Get out of here with your facts.
So it was on the drive in that I began to keep a running list of TERRIFYING THINGS ABOUT COLORADO.
Srsly. Colorado was very kind to me, but it was kind in that way that a mob boss takes care of his favorite girl: Overwhelmingly lavish, but you get the feeling that your life could end if you get cocky. I have a whole list of reasons this is so, but I’m saving it for another post.
We arrived in Avon around 3. The lodge where we stayed was lovely. Not overwhelming, not cramped, just cozy and comfy. The only problem? The stairs were designed by a mad genius. The building is three stories tall, but in order to get to our room we had to climb about sixteen thousand flights of stairs. And yes, there was an elevator. We still had to go up and down seemingly random pyramids of pointless stairs because evidently the architect for that place was M.C. Escher.
We made it up to the room. I walked into the sitting area, put my bag down, pulled back the blinds to look out the patio door, drank in the majestic mountain view….
And then it began to hail.
That is not an exaggeration. The hail started pelting the deck about 30 seconds after we entered the room. I’ve never seen hail come down that fast. Within ten minutes, there were piles of white, slushy hailstones collected outside the sliding glass door.
We had to have a snowball fight. Instead of throwing them at one another, we aimed for the parking lot three stories down. Unfortunately there were no pedestrians to shoot for, but the ice made a very satisfying smack against the pavement.
Then we looked up, and found that the sky was arched with the most beautiful double rainbow I’ve ever witnessed.
See what I mean? CO was good to me. It gave me snowballs and a rainbow light show for my birthday.
By the time we both got settled in, we were so tired that dinner became a stay-in affair. There was a grocery store across from the lodge and we loaded up with snacks and incidentals to sustain us for a few days. We went back to the lodge, ate entirely too many snacks, and passed out in a carb coma.
Saturday Jenn took me to nearby Vale to shop, and I got to see how the other half lives. Those people are so rich, y’all. We passed an airport with dozens of private jets for the occupants to fly in and out with. DOZENS, man. And it’s not just that they were rich, all the inhabitants of that area seem to be bursting with health. I have never been that healthy a single day of my life. It was really hard for me not to be jealous. But here’s the other thing: Everyone we met was so NICE. They smiled with their perfect white teeth and said hello in loud, engaging, friendly voices. They gave everyone personal space and played happily with their well-behaved children at a polite volume. There was some kind of epicurean festival as well, and every bougie restaurant in Vale had all these crisp white tents set up with plates of five-star food set out like street vendors sell nachos. It smelled delicious, and more than anything I wanted to stop and talk to the chefs that all looked like Iron Chef America contestants. They all looked so busy, though, and my presence was urgently required at the chocolate shop. By the time I left there with a giant tote bag of diabetes, I felt sufficiently rewarded.
Then we got on the Gondola. You know how when something sucky is happening, people say “find a happy place?”
Riding that Gondola will forever be my happy place. Peaceful and warm and sunny, climbing higher and higher through the sweeping curtains of evergreen that clothed the mountains around us.
When we reached one of the mountain peaks, we got off and Jenn took me to an overlook so that we could see the landscape around us.
My life will never be the same.
I don’t want to get all philosophical on you, but something truly monumental happened to me on top of those mountains and I have to describe it. I’m a pretty weepy person, but I’ve never been inclined to cry at something just because it was beautiful. I stood there on that mountain peak, seeing the valley spread below and the mountains ringed around me, vanishing into a smoky gray mist as far as I could see, and quietly ruined my makeup.
There’s a movie that Tom Hanks starred in when he was younger, Joe Versus the Volcano. There is a scene where he is stranded at sea on a raft and believes he is dying. The sun sets and the moon rises, large enough to take up the entire sky and flooding soft white light across the endless ocean. Hanks stands to his feet only to fall on his knees. He prays, “Oh God, whose name I do not know…Thank you for my life. I forgot how BIG you really are.”
That is the best way I can explain the emotion that took hold of me on that mountaintop.
When so much of your life is about surviving pain, taking things moment by moment, never knowing whether tomorrow will be okay or if it will take all your focus and strength to not give up, you lose perspective. You paste a smile on your face and do what little you can for those who need you and forget that there is a whole world out there that can’t be made less good by how much pain you’re in or how much energy you have that day. I stood looking over that mountain range and thought about the forces required to send those mighty peaks of earth jutting into the sky. The air felt different, and not just because the high-altitude wind was blowing through me. When I breathed in, it felt like my lungs were really filling with air for the first time in years. I don’t know where your faith lies or what it rests in, but as for me…
I met God on that mountaintop.
I saw how far He’d carried me, and how far we still had to go, and I felt the absolute quietude of Peace, glorious and nonsensical and only possible when you know how truly enormous your Traveling Companion is. I knew in that moment that there is more joy than pain to be had for me, no matter what I face. I also knew that even when I left those peaks, the God Who formed those mighty mountains will follow me down into the valleys.
I will remember those few moments we stood up there for the rest of my life, but the high altitude quickly got the best of me. I didn’t feel short of breath, but I felt horribly dizzy and heavy and even a little queasy. So down we went, and on to our next adventure.
For dinner that night, Jenn had made a reservation at one of the (I’m sure) dozens of fine restaurants in the area. We got dressed up and girl, we looked GOOD.
Pity our husbands weren’t there to eyeball us, but….too bad for them. We ordered a five course tasting menu, and it was everything I thought it would be. I don’t have pictures of all the food, because I kind of feel like I’m being rude to the chef by snapping pics of a plate while the perfectly prepped and arranged food they made for me gets cold. I tried elk for the first time. It was delicious, but I have the feeling that if you’re the kind of person that prefers your meat cooked above medium rare, you’re going to have to make peace with a half-hour chewing project. I’m a rare/medium rare kind of girl, so it was like a really excellent, flavorful steak. The sauce on top tasted very familiar, and I asked the waiter what it was flavored with.
I did not expect to see panic in his eyes.
“Um, I….I don’t know…I don’t know what the chef uses. I don’t think there are any…spices in the kitchen.” He said the word spices as if it were a slur, which confused me greatly. I thought spices were desireable for cooking. Maybe he thought I didn’t like it.
“It tastes great, there’s just something familiar about it and I was curious…”
“I’ll go get the chef!” He said quickly, and scrambled away. Now keep in mind, I’d just watched him have a fifteen minute conversation with Jenn about the wine selection. He had an even longer powow with the Bostonian woman seated next to us, who kept waffling on her choice and commented like a broken record that she was afraid her wine would “confuse the story the chef was telling with his food” or something pretentious like that. She even tasted a few glasses and kept saying how she wasn’t keen on it. This waiter discussed the subtleties of each bottle endlessly with her until I was ready to walk to the nearest gas station and buy her a bottle of Boone’s Farm to plunk down on her linen tablecloth.
Sure, do all that nonsense, but go ahead and fah-REAK when I ask you what frickin’ spice was used in my elk like it’s the weirdest question he’d ever heard.
So, I decided, I’d do my own research. I’m not a supertaster by any means, but I’ve got a very good sense of smell and by the time I’d finished another bite I had a working theory.
“It’s nutmeg.” I said finally, just as our waiter, now covered in a stylish coating of flop sweat, made it back to the table.
“Yes!” He said, taking a deep breath and relaxing his quivering shoulders. “We DO have nutmeg in the kitchen. I’m sure that’s what it is. I’ll go let the chef know.” Because apparently Chef is required to commit seppuku if he’s caught using spices in his cooking.
Really? You have nutmeg? Well, guess what Mr. Fancy-Dancy Maitre’d? NUTMEG IS A FRICKIN’ SPICE! I don’t care that he didn’t know, I just don’t understand why he got so stinking panicked. If I committed some kind of fine dining faux pas, I’d like to know.
Well, apparently Jenn wasn’t offput. She immediately began to sing my praises, illustrating graphically why she is my very best friend. “I can’t believe you knew that! That’s amazing! She’s amazing!” She informed our palpitating, slightly moist waiter. “Did you see that? It’s nutmeg, and she figured it out!” She told the keen bostonian that was worried about the chef reading her a story. Ms. Keen stared blankly as Jenn shot sparkles from her eyes. Okay, maybe that part didn’t happen but it totally would have fit.
The meal finished with a bang. They’d found out it was my birthday (the day before), so my dessert had a little special something. That was one course I did take a picture of, because in real life I’m trailer trash that can be impressed with a sparkler candle.
Sunday, the plan was to drive to the nearby hot springs and spend a couple of hours relaxing in the historically medicinal waters before taking a drive through the mountains. We got an early bedtime, but not before meeting a few other guests at the lodge and earning nicknames. Collectively, we were Texas. Jenn was Dallas and I was Houston. We were given the nicknames by Wisconsin and her husband, Mr. Wisconsin.
At 1am on Sunday morning, I awoke after a nightmare about being stabbed low in the stomach with a hot section of rebar the circumference of a soda can. Literally any woman reading this knows what I woke up to. That’s right, it was time for me to lose most of the blood in my body through my two deranged uteruses. The cramps were stellar, completely up to par with the usual performance of Steve and Igor.* I did not get back to sleep that night.
Come morning, it became clear that hot springs would be a completely untenable idea. In reality, I was totally on board with having more time to drive through those mountains.
The drive was everything I hoped it would be. It was fun and peaceful and beautiful and completely restful. I was in pain, but not so much that it put a damper on my good time. We talked. We listened to audio books. I screamed that we were going to die as we went around heavily trafficked bends with NO emergency lane and NO guard rail, inches away from a 7 million foot drop. Seriously, Colorado? Gravity is a thing, no matter how rich or healthy you are.
I must restate that I found peace in them there hills. People talk and talk and TALK about how amazing the beach is, but I never got it. The rush of waves is a constant background irritation to me. I don’t care for sand or palm trees, and the sun and I hate one another with a fire on par with the Hatfield’s and the McCoy’s. Those mountains, though. The way they loom above me doesn’t feel threatening, it feels protective. It’s the same feeling I get from the dense pine forests in deep East Texas, as if nature itself is huddling around me to shield and shelter me. When I’m on the mountain itself, I get the same feeling I used to get when I sat on my dad’s shoulders as a kid. It’s a sensation of being lifted and at the same time knowing that what’s beneath me will never give out. Instability and insecurity have no place there, and it touches my heart in a deep, raw way.
Sunday was our last full day in CO. Monday morning came, and we wove our way back to the airport. Both of us were quiet on the drive. Both of us missed our people, but neither of us wanted the trip to be over. I was still dealing with the fever, weakness, and cramps, and hoping against hope that I would be able to manage the flight home without any crises. Jenn was trying to figure out what she was going to do from 3 when my flight left til 7 when she was scheduled to fly out. Even though the atmosphere was melancholy, it’s hard to be sad around Jenn. It’s why we’re friends.*
The Denver airport was busy, but not chaotic. We found a good restaurant and had pre-flight dranks. They were delicious. It was called a lime in the coconut Moscow Mule and came in the most precious little metal cups I’ve ever seen. The food was delicious.
By the time we made it to my gate, we only had about 20 minutes to kill before I was to board. I thought at that point that I could reshuffle my bags just a touch in order to make my personal item a little less heavy.
Jenn was trying to help.
I swear to God she was trying to help.
When she unzipped my suitcase, my underwear exploded everywhere.
Did I mention I’d been…ahem…ON MY FRICKIN’ PERIOD?
Yeah. THAT happened in the middle of a crowded airport terminal.
I don’t want to talk about that any more.
So my flight boarded, and it was back to reality for me. This time a male flight attendant saw me struggling to lift my suitcase. With a few kind words, he stowed my luggage and helped me into my seat. Two ladies found the seats next to me who just looked relieved to not be sitting next to a 400lb creepy guy. This time I only kept the window open for takeoff. The miniscule landscape below me seemed sweetly sad this time as it slipped away.
I arrived back in Houston at dusk. The giant of a college dude that had been sitting behind me lifted my suitcase down, and the same kind flight attendant carried my bags to the door of the plane. The airport was fairly deserted, and the atmosphere reminded me of a department store in the last hour before close. I didn’t feel too great, but I wasn’t anywhere near as sick or tired as I thought I would be. My dad was there, faithful as always to bring me home. He listened happily about my adventures, and I listened happily about the things that had happened around the house while I was gone. I came home to a surprisingly clean room, though the bedspread was on sideways. Mom said that in the 30 minutes before I got back there was the sound of a struggle upstairs, like someone was being killed with a blunt object. She (correctly) surmised that it was the sound of Shaffers cleaning for mom’s return. I passed out souvenirs, kissed Robert goodbye before he left for his night shift, and caught up with the house. Even Alex hugged me tight and said he was glad I was home. Not that it’s unusual for him to be affectionate, it was just one more thing that made it good to be back.
So that’s the story. Aside from puffy legs and a righteous travel hangover that lasted all week, it all went fairly smooth. Especially considering that Steve and Igor didn’t want to play nice. It was really the best vacation I’ve ever had. It was also the best birthday I’ve ever had, and I’ve had some incredible birthdays. I learned a lot, both about myself and about travel with a chronic illness. The biggest tip I came home with is this: Always travel with someone who understands the limitations that come along with chronic illness. I don’t know what that trip would have been like without Jenn, but I know it wouldn’t have been nearly as fun, and I probably would have gotten much sicker. There is no one around like my Jenn, but try to at least find someone with that kind of awesomeness and attach yourself to them like a remora on a shark.
To close, here’s a list of other tips I’ve gleaned for traveling with a chronic illness:
Let’s review the ear plugs, especially if you’re sound sensitive. Between the roar of the engines and screeching babies, ear plugs made the plane so much more pleasant.
Dress in layers. Not just when you’re traveling, but especially then. Layer those clothes on like you’re the queen of the hobos. You can always take things off to cool down. I was alternately stripped down to my tank top and swaddled in clothing, and it did a lot to make me more comfortable.
Stretch. Don’t let yourself sit still too long.
The bottled oxygen they sell? Yeah, it didn’t help me at all. I never really did get short of breath, at least not more than usual. A time or two I kind of gasped reflexively in the middle of a breath, especially if I was talking and forgetting to breathe, but nothing distressing. They sold little trigger-release oxygen bottles, but as far as I’m concerned they were a waste of twenty bucks.
Make an alternate plan for everything. If you wake up one morning of your trip feeling bad (like I did) have something easy and fun as a backup plan that doesn’t aggravate your symptoms. Heck, we had a really good time listening to a dang audiobook in our hotel room. If worse had come to worse, I’m pretty sure both of us would have been happy sitting on the couch with our feet up, working on projects side by side. I sure am glad we got to go on that drive, though.
LOAD UP on vitamins, especially vitamin C and B complexes, two nutrients it is almost impossible to overdose on. I’m pretty sure the vitamins were part of the reason the trip went as well as it did.
STILL TO COME!
Travel skin care AND why Colorado is trying to kill you.
*Yeah, I named my uteruses. If you had two, you’d name them. Trust me.
**At this point you’re probably asking yourself why Jenn is friends with me. I’m not too sure either, except that I’m good at accompanying her to do the things and narrating them in a way that makes her feel like the protagonist in a good novel. I’m basically her bard, I guess, which I’m pretty darn happy with.
So earlier this year, I got a call from my best friend in the world. Her name is Jenn, and I’ve talked about her a lot. The reason for that is that she has a special place in my heart. She knew me before I was sick. She was my friend. Then I got sick. Suddenly I couldn’t come over three or four evenings out of the week. Suddenly I didn’t have the money to go do fun things. Suddenly I was having a health crisis that had me weeping like a fool every other week. She never wavered in her support of me. She is still my friend. The other chronic mamas and daddies in the world know what an incredible statement that is. There are scores of people who love me who at some point said something along the lines of “Don’t you think enough is enough? Shouldn’t you suck it up and not be sick any more?” because that is what society programs us to say. Not my Jenn. She may have thought it a thousand times, bless her heart, but if she did I won’t ever know it. As far as she’s concerned, I’m trying as hard as I can and that’s always good enough for her.
When she called me back in March* it was to tell me she was taking me on vacation, to a lodge in Avon, Colorado for a four-day getaway. She’s talked about the lodge for years, because her family has been going there since she was itsy bitsy. This year, she announced, she was taking me. We have never been on a vacation together, and it was time for the Buddy Comedy that is our friendship to test those waters.
The first thought in the loser half of my brain was, “There’s no way I can enjoy a vacation with Fibro.”
Then Normal Erin punched Loser Erin in the kisser and started planning.
Packing was the first challenge. Not only did I have to prepare for all the many-splendored eventualities that can occur with my body, I had to do it all in a carry-on and make it light enough to lift into the overhead compartment, because as much as I think people are capable of good I also know better than to expect that a good Samaritan will lift my luggage for me in a cramped plane at 7 in the morning. I was just being realistic. I’m a fairly sweet person but if you jerk me out of bed early enough I will kick a kitten into traffic.**
I looked up some YouTube instructional vids on how to pack efficiently. Then I realized that I was taking a semi-nice dress and if I crammed it in an astronaut ice-cream space cube it would be wrinkled. Sure, there was probably an iron at the lodge, but I am not a soul inclined to plan housework during a vacation. To make a long and disappointing sartorial saga much shorter, the wrinkle-prevention measures didn’t work but a travel bottle of wrinkle releaser did. Pack it wherever you go.
One good bit of advice I got was to make sure everything in your bag can be worn with everything else in your bag. That hit a chord with me, so I used my most multi-purpose clothing. It wasn’t as hard as I thought, since most of my clothing has gotten pretty modular since I got sick. Here’s a breakdown of my usual daily uniform:
Underwear: Mind your own business. No, but seriously. Cotton.
Pants: I normally stick with leggings. They are light, suited to a variety of temperatures, and don’t catch or pull while I’m moving, which hurts and makes me turn into the Hulk***. I like the ones with the tummy control panel, but not only because they control my tummy. The panel presses in a flat, wide band against my trunk instead of digging in and hurting my tender abdomen, which is the locus of my most severe and frequent pain. When I simply can’t bear anything at all pressing into my abdomen, I wear a maxi dress and damn the consequences. I didn’t feel like I would want to wear a maxi dress on this particular weekend, because of the flappy, catchy materiel and the likelihood of strong, cool, cotton underwear revealing breeze in the mountains. I packed three pairs of black leggings for my trip, because black leggings are the beige paint of the clothing world–important for a foundation if a little boring to look at.
Undershirt: I usually don’t wear a bra because bras are implements of torture on the best of days. On a flare day or a tummy pain day, I might as well be girding my mammaries with steel wool, rebar, and a healthy nest of fire ants. However, I’ve found that a stretchy, fitted tank top underneath the rest of my clothes is a light, soft alternative that keeps the Girls under control. Also it’s a fun way to wear bright colors without feeling like a circus clown. You can wear a more sober and slimming solid color over top and let just a hint of your sparkling personality show around your hips or chestal area. At least, that’s what sounds good in my head. The reality is that if I get too hot (I get overheated super easy and feel really sick when I do) that overshirt comes OFF and my armpits embrace the unfettered breeze that the tank provides.
Overshirt: I prefer mine extremely loose. I have a few big t-shirts that say inspiring things, but really I like solid colors. I have a lot of quirky jewelry and hair accessories. In fact, more often than not I can be found with a cat ear headband upon my noggin. Having solid colors in your main wardrobe makes it very easy to pick your accessories with a minimum of fuss. Which brings me to…
Accessories: This is more of a self-care category for me. Like a good coat of mascara and lipstick, certain baubles make me feel more like myself when I wear them, like a talisman that summons the image of a healthy adult human over my own exterior. I had to come to some balance on this trip, since the mental energy required to care for a separate stack of accessories for each outfit is SO far beyond my capacity. So I wore my favorite ring and necklace the whole time, storing them in a tiny pouch in my purse when I couldn’t keep them on. I also took a headband and two lightweight metal clips to quickly get my hair out of my face. The headband serves double duty when I wear my glasses, by the way. If you place the contact points on the arms of your glasses behind the ears, not only does it keep your glasses in place but it keeps the headband from doing the thing where it tries to dig into your brain stem.
The toiletries I packed will be in a separate blog, maybe even a video, because that is a whole other ball of wax.
My flight to Denver was at 6:30 am. That meant I had to wake up at three. My dad was sweet enough to drag himself out of bed and take me. Have I mentioned I never travel? I’ve been on a plane twice in my life, both times for a trip to California. I was with a friend who is more at home in airports than anywhere else, so I basically trailed along behind her and did what she said to do. This time, Jenn was going to meet me at the Denver airport, but I was alone for the flight out of Houston. Not a big deal for most functioning adults, but for me it was just a tad scary. The increase in airport security since 9/11 means that some of the security regs aren’t exactly intuitive. I was afraid it would play out something like this:
Security: Ma’am, could you please step to one side?
Me: I’m sorry, is there a problem?
Security: You appear to be wearing cotton/polyblend underwear. As I’m sure you’re aware Mrs. Shaffer, IF THAT’S EVEN YOUR REAL NAME, cotton/polyblend underwear is instrumental in the making of nuclear weapons.
Me: But I….
Security: UP AGAINST THE WALL! YOU WON’T BE DESTROYING DEMOCRACY TODAY, MADAME KIM JONG UN!
So that was a thing that didn’t happen, in case you were wondering. Another worry I had was how my body would handle the sheer amount of walking. I know I posted that long, ranty video about taking a damn wheelchair, but listen. It was early. I was barely able to speak English. I couldn’t mentally cope with finding an airport employee, asking for wheelchair assistance, and then getting through security while an entire serpentine line full of people watched me fumble through the unfamiliar process. I found it was a lot more important to me to try to feel normal at that point in my day. I was grateful, however, that the option was there. Movin’ on.
Once I got through security (with no body cavity searches, I might add) I decided to take a look at some of the weird little shops that only seem to exist in airports. I found a snack for the flight, and a drink. I remember two things about my last flight: How freezing cold it was and how dry my throat got. With those bits of broken memory I got a bottle of Hint water (watermelon. Not worth the money, extremely underwhelming flavor and the water itself tasted like tap water. I hate tap water, and I’ll be damned if I’ll pay $3 for what tastes like a bottle of tap water that at some point in its life was carried past a bag of watermelon Jolly Ranchers. GET OFF MY LAWN). I also found exotic jerky and bought some, because of course. I got the Venison and the Wagyu beef. Also not worth the money, but fairly tasty jerky nonetheless.
I only had a few minutes to eat my morning snack before my flight boarded. I flew Southwest, which I’m told is a pretty different experience. Instead of being assigned a seat, you have to check in up to 24 hours before your flight. The order of check-in determines your position in the boarding line, and the earlier you check in the sooner you get to board. Once you’re on the plane you can find your own seat.
I definitely wanted to sit by the window. Even though I’m deathly, unreasonably, uncontrollably scared of heights, this was one of those places in life where it just doesn’t do to opt out because you’re terrified. I wanted to see what the world looked like from an airplane thousands of feet in the air, and I wasn’t going to let a little thing like an anxiety attack stop me. I was able to find a spot by the window, heft my carry-on into the overhead compartment (seriously, who thought that hot mess was a good idea? Let’s take a heavy load and LIFT IT OVERHEAD in a super confined, awkward space where it could team up with gravity and give me a concussion) and settle in my seat. A nice, quiet, introverted couple sat beside me.
Okay, time for a Chronic Travel Tip: Earplugs. I would have been a nervous wreck on that flight if I’d had to hear the whole thing. If you’re in any way sound sensitive and you’re unfamiliar with flying, wear earplugs. I also had my sweater in my lap, because I have literally never been so cold as I was on my flight to California. The Denver flight, not so much. It was stuffy, actually, and I began to understand why airsickness is such a big thing. Fortunately, my stomach stayed in place and I was able to watch the ground fall away from beneath the wildly flexing metal wings. Yes, you read that right. I know airplane wings have to be flexible, but the plane I was on was flapping like a dang stork. It was a touch unnerving, but still cool.
The flight was supposedly two and a half hours, but it didn’t feel that long. About the time I started nodding off, the plane was descending into Denver and I discovered another Chronic Travel pitfall: Like many people with chronic pain, it takes me a very long time to get moving if I’ve been sitting for a while. Unfortunately, when you’re getting off a plane there isn’t a lot of time or space to do my post-nap zombie crawl until I get limbered up again. Of course, I waited until the people had filed out of the back of the plane so that I wouldn’t actually fall over onto anyone and crush the life out of them, but the plane’s crew were giving me nervous looks, as if they were worried I was dead with my eyes open and they would have to drag my corpse into the airport.
So I did what the Chronic Mama does best: I used obstacles to make myself stronger. Specifically, I used the fact that there was a handhold everywhere in the form of tightly-packed cheap plane seats. I couldn’t describe properly to you how I came to be standing at the gate, luggage in hand, I only know that I did it and it involved a lot of crawling on my knees and using objects like a walker to take pressure off my legs and feet as I walked. Still, I didn’t feel as bad as I was afraid I would feel, and once I saw Jen’s beautiful face through the crowd I forgot all aches and pains. My vacation had officially begun.
*I think. Take it easy, I barely remember my own age.
**I do not kick kittens.
***Only a Hulk with chronic pain and fatigue. So not the hulk. More like a sick, large, green person with rage issues.
Look, bacon is delicious, but it’s a gigantic drag to cook in a skillet, and also sends out little darts of molten hot grease that could burn your sensitive little squishy parts. The oven is slightly better, but it takes a long time. It also can create lots of smoke, and besides that….IT’S 174 DEGREES OUTSIDE I AM NOT TURNING ON THE OVEN AND NEITHER ARE YOU!
My dad pioneered the paper towel method, and I’d like to think I’ve standardized it some. Here are the rules for the microwave bacon game:
1. You can use either paper towels or hand towels. Just make sure it won’t leave lint on the bacon, because then you will be sad and have lint-flavored bacon.
2. Cutting the rasher in half will make it easier to arrange slices.
3. Use a paper plate if you are so inclined. Remember that the long cook time can heat crockery to a temp that will incinerate your fingers.
4. Do not leave the kitchen while these dudes are getting cooked. Just don’t.
Grab your plate, place four layers of paper towels on it. Line up your bacon slices in a single layer. When the plate is full, you can place a single thickness of paper towels over it.
If you need more bacon because your family has issues and needs an intervention for their pork consumption…
That’s right. you can stack the bacon like a porky tower of happiness. Just lay down two layers of paper towel and repeat the bacon arrangement. I’ve found you can cook up to four layers evenly.
If you only have one layer of bacon, start by zapping on high for two minutes. If you have multiple layers, start with five minutes. This morning I made 3 layers of bacon in about 15 minutes (five minute increments). Use your judgement and your intimate knowledge of your own microwaves powers.
The only thing left to do? Why, eat the bacon, of course.
If potatoes were a person, or if there were a personification of the potato in the form of a Great Potato Spirit, my kids would probably like that being more than they like me. They would wear WWPD(What Would Potatoes Do?) gear and attend Youth Potato Rallies.
At this moment there are a dozen pre-baked spuds wrapped in plastic wrap in the fridge, ready for snacking. To be fair, the pre-baked taters mash up pretty great for a single serving of perfect mashed potatoes. My mom found this out the other day, and since then my brain has been itching to explore the noble potato.
The potato started out as a poisonous weed. The Incas took that weed and made somewhere around 3,000 varieties of potato. I couldn’t even keep my Tamagotchi alive for its whole life cycle, and these dudes had more kinds of potatoes than I have the patience to count. The Irish, who everyone seems to think of when they think “potato,” had one variety they called the Lumper. Appetizing, no? Because of missing genetic diversity, when the potato blight hit, it wiped out all their crops and starved most of ’em into the good old U-S-of-A.
And here I am! Did I mention my Great-Grandfather’s nickname was “the old Irishman?” And you’ve seen my daughter’s hair. I’m pretty sure our Irish side was over here before the potato famine, but the point is that….I forgot the point. Let’s see….Irish, Inca, potatoes…..
Potatoes! Let’s talk about making potatoes!
As I said above, I have taken to leaving large deposits of ready-baked potatoes around the house. My dad recently had surgery, and I’ve been devoting most of my Energy Budget™ to helping him or chasing the Little Red Blur™. My kids have gone from consistently eating eggs to consistently eating potatoes. It’s not an unreasonable switch, and it’s something everyone in the house can eat. To bake a potato I turn the oven on 375° because I’m not trying to stand around until my legs need shaving waiting for some dang taters to cook at 350°. I wash the spuds, stab them with a fork, and put them straight on the oven rack for 45 minutes. At that point all you gotta do is let them cool and wrap them up for later. Some people advise rolling in oil and salt, then baking at the aforementioned ain’t-got-time-for-that temperature. Frankly, nobody in my house eats the skin anyway, and at 375° the oil starts to smoke and smell like bad decisions. I’d rather forego the oil and get faster, trouble-free potatoes.
Okay, now I don’t know your life. I’m not trying to say baking potatoes is fast, or that it’s an option for every night. No, some nights you have to make potato leek soup. But wait, here’s the best part….
You don’t have to cut any stupid potatoes. You don’t have to stand around forever waiting for them to cook. Potatoey goodness can be yours in a dollar box of potato flakes.
I sense I’ve lost some of you.
I really, really don’t think potato flakes make good mashed potatoes. They tend to either get gluey or taste like the box. But in the relatively low heat, flavorful environment I’m about to propose, they have a perfect texture and a delicious taste.
Ain’t it purty?
Potato soup is the perfect cold weather food, and it’s the perfect food if you’re feeling under the weather. Creamy without being heavy, depth of flavor without challenging spices, and that velvety warm texture that feels like crawling into a warm pair of jammy pants.
If you’ve never deconstructed a leek before, don’t worry. I hadn’t either, and it was the easiest thing I did that day. Cut the white part off, cut the root off, and split in half lengthwise. These things grow in the dirt, you know, and the concentric leaves need to be rinsed free of all grit. From that point on they’re as easy to cut as celery. I used three in my soup, but only because the store sold them in bunches of three and I wasn’t in the mood to have one lone leek sitting in my fridge, waiting to be dispatched like its brethren. Leeks have a mild onion flavor which is deep, but not pungent. They also don’t make your breath and clothes smell like teenage gorilla armpit. They also don’t make you cry like you’re watching the end of Return of the King. Yeah. I cried. You did too. Wuss.
So start by softening the sliced leeks in butter or the oil of your choice. I had some really tasty compound butter with herbs and lemon zest. I used two tablespoons of that and about a tablespoon of an avocado/sunflower oil blend just to stretch the butter a little and raise the smoke point. I sweated the leeks. And sweated them. And sweated them. Then I added a little veggie broth, smacked on the lid, and let those little dudes simmer.
When I could smoosh the leeks with the broadside of a spatula, I knew they were done. You can use eight cups of any flavorful liquid you like. I used a quart of veggie broth and a quart of lentil broth for extra creaminess. Once the broth hits a solid simmer, hit it with somewhere between two and 2 3/4 cup of potato flakes, depending on how thick you want your soup to be. My advice would be to stop at two cups, and sift in the rest little by little until the viscosity pleases you.
My mom came home after a VERY long day and fell headfirst into the soup pot. By the time we mounted a rescue, she was doing a backstroke in the dregs.
What’s that, you’re fancy and want a proper recipe? Well, here you go.
Chronic Mama Potato Leek Soup
3 leeks, trimmed and split
3 tbsp fat of your choice
8 cups flavorful liquid of your choice (I used a quart of veggie broth and a quart of vegetarian protein broth, made with lentils for creamy goodness)
2-3 cups potato flakes
Heat your pan on low. Add the fat and heat it till it gets all shiny. Toss in the leeks and a pinch of salt. You can sweat them until they are just translucent if you want them to hold up in the soup. If you want that uninterrupted velvet texture, add 1/4-1/2 cup of your broth, cover, and steam for 10-15 minutes or until the leeks squash easily under a spatula. Add the rest of the liquid. Heat covered until just simmering. Sprinkle in two cups of potato flakes, holding the rest back until you’re sure the consistency suits you. If you want the soup thicker, this is the time to do it.
Allow potato to fully hydrate (2-5 minutes) and serve. We garnished ours with some crispy onions and a few scallions. My husband is requesting bacon bits for the next go-around.
And there you have it. One of the simplest recipes I believe exists in the annals of the Chronic Mama. Once again, the noble potato in one of its many manifestations has become our dinnertime hero, and we should all give it the notice it deserves.