I am on my way to New York to see my awesome sister graduate into the Even Smarter Sisters Club! Now, mind you, I am going for one night. Count it-one night! I literally look like I have enough freaking luggage to be gone a week……sigh. All of you Lymies out there, or people that travel with Lymies will be able to relate to this nonsense! Lyme is like a toddler. It thinks my world revolves around it and it demands instant gratification or it throws a hissy fit!
My travel ridiculousness revolves around the many wonderful symptoms related to Lyme and my other infections. So the first thing that comes to mind is the fact that I have to pee again…..really bad…right now actually. I already made my sister stop once-before we were even out of the fuc&*^%$% Dunkin Donuts parking lot so I am trying to type and ignore my whining bladder from hell. Both Lyme and Bartonella create urinary frequency and urgency-we are talking run to the bathroom every hour if you drink something. I mean RUN…..so long car rides can be ugly LOL. I am really thirsty now too, but can not give in to the urge to sip my coffee as I am far to young and vain to buy old lady underwear to prevent the inevitable bathroom bolt.
So, as I look around for the next Lyme lunacy to discuss, it has to be my bags. I have 2 bags and my purse, and travel pillows. My suitcase is as big as a friggan stove due to all the shit I need to bring to survive….yes survive….1 night in a hotel! Why, you ask, do I need so many bags? Because Lyme has so much baggage of its own! I guess we should discuss the contents of my gigantic suitcase that my sister almost injured herself lifting into the car! However, I will be back in a moment as we are pulling into a rest stop…..just in time!
I am back. Did you miss me? Luckily, my motion sickness that is only here when Lyme is super bad has not joined me yet as I am really glad to be typing and not looking at road. We have switched drivers now and my adolescent niece has the wheel. I love her to death but her driving on highways……not so much. She is funny and shows how my Lyme impacts her trip as well though. With the unfiltered outlook typical of a 20 year old, she told me to stop limping like an old lady as we walked in store. Then, after we went to the bathroom and left the stop with no purchases, she said, “Well, that was a wasted stop” LOL. You Lymies know how fun the arthritis can be, right? My fickle hip and left leg has really been bothering me and gets worse with either too much or not enough activity. (My wrists keep trying to lock as I navigate my keyboard in the back seat also.)
So, back to the insanity that lives in my mammoth suitcase. First, I need to travel with a bed raiser-yep you read that correctly! I have Barrett’s Esophagus so I MUST sleep with my head and chest raised up to keep the acid reflux typical of Lyme from aggravating the condition. I do not travel without my handy dandy contraption that goes under the cheap hotel mattresses to raise me up. Now, I need to get to every hotel early so I can set it up because it is a motorized air filled wedge that sounds like a jet liner is taking off when it expands! Sometimes, it deflates and needs to be turned on again at 3am-not fun for anyone sharing a room with me.
You might think that would be it for sleeping paraphernalia-not even close LOL. I have a neck wrap heater thing that I need around my neck to keep my herniated disc-typical to Lymies-in check. I have pillows for under both arms so Lyme neuropathy doesn’t make my hands go numb. Lyme causes severe muscle aches at times and Bartonella causes leg pain. At my house, I have the automatic bed that raises the head and the feet. The raised feet helps the muscle pain along with the sweet massager my bed has. But, there is another reason I need the legs to raise. With my head up, I will slide off the bed and break my freaking neck or wake up with a bad-ass back ache without the feet raiser. So, as you can imagine, I need to bring gargantuan pillows to raise my legs in a hotel if I am sharing a room. I look like a fuc%$^^ caterpillar in a cocoon at night.
Bet this sounds super cozy, huh? It actually is until Babesia joins the sleepover. Picture me all bundled up-a process that takes life 15 minutes to get right at home. Then, suddenly, I get raging sweats and literally have to strip down and stand in front of the fan. Couple this with the nightly need to get up and go to the bathroom every 20 seconds-and then spend 15 minutes readjusting everything each time and Lyme insomnia which makes me watch tv at all hours. I think you can see why I like , no love, my own bed in my own bedroom. Luckily for him, my husband falls asleep fast and nothing wakes him.
What else besides the bed and sleep shit is in my suitcase? Well, I need like five medicine organizers for one night. Like you all can relate to, I have right when I wake meds, meds after I wake and before I eat, morning meds, lunch meds, dinner meds and bed time meds. I have tinctures that can’t mix with meds or food also. I have other meds for insomnia, migraines, heartburn, muscle pain, lactose intolerance, cortisone for Lyme itchy skin and more. And when I have to do my weekly infusion because Lyme hijacked my freaking immune system? Well, that is a whole different suitcase issue lol.
Then, I have all the normal stuff you bring on a trip that Lyme can alter somewhat. I need special shampoo and conditioner and combs because Lyme is trying to make my head look like Yul Brenner’s. This means I need my own hair dyer and curling brush to spread what little hair I have left into a perfect poof-which takes a lot of hairspray to keep in place LOL. Hairspray cans are space hoggers in a suitcase. Seriously, bald is not a good look for a 53 year old woman. I also need special sensitivity tooth paste as many Lymies do. I also need eye drops and extra clothes in case I sweat through pajamas or don’t make it to a bathroom on time. (Don’t even get me going on the IBS shit that comes with all my tick and parasite fun.)
I bring a lot of face wash and body wash and special creams that are supposed help my super dry, possibly Lyme ACA skin as well. On a bright note, I do not have a ton of make up. I do need it mind you to cover my Ricksettia eye rings and Bartonella bumps buy Lyme makes me tired and I rub my eyes. Trust me-it is just better for this girl to go without make up. I guess that is it besides books, IPAD, cell phone chargers and, oh yeah, the sleepy tea I make every night. Well, we are at a restaurant. Time to eat and take my lunch meds. Thanks for travelling with me! Please feel free to comment! I would love to hear your own stories! Stay well-well as well as you can!