Three Things I’ve Learned About Healing

Three things I have learned about Healing:

1) Healing takes time, more time than expected.
When I was first diagnosed with Lyme, I was told I would feel much better in three months and be fully recovered in six. A year and a half later, I’m still fighting. I’m much better than I was, (MUCH MUCH BETTER), but I’m not quite done yet.  Healing takes a lot longer than what is originally expected. 

2) Healing is hard work.
Healing is not just a matter of sitting back and letting your immune system do its thing.  It involves a lot of work, more work as the healing progresses.  The start of the journey involved a lot of resting.  As time went on, it involved walking, and then yoga, and now jogging and strength exercises.  It involves doctor visits, pill taking, trips to the pharmacy, exercise, blood tests, and working to pay those bills.  Healing is not always easy.  The drudgery of taking pills 6 times a day can ware down mentally on a person.  And it can be so easy to just give up.  To not take any pills today, to sleep in and skip the yoga; but it becomes increasingly important to keep up on the responsibilities of healing.  It’s hard work, but necessary work.

3) Healing can be frustrating.
Recovery is not a straight line from start to finish.  It has a start point and an end point, but the middle goes up and down and up and down, over and over again. One week it feels like real progress has been made, and the next it feels like your progress has been reversed.  It’s frustrating.  That’s how the first part of recovery feels. 

The latter end of recovery, when you’re nearing the end point, can be even more frustrating.  You keep thinking you’re near your goal of wellness, when a setback pushes the end point further out. You start feeling better, not 100%, but feeling well enough that the appointments, tests, and pills, seem a little pointless.  Every time you have to swallow more pills, you wonder if they are even doing you any good anymore.  And the doctor’s visits are bothersome, as your doctor says the same thing he did last time, “You’re getting better.  Keep doing what you’ve been doing.” 

When you get close to the finish line, you can just catch a glimmer of the red ribbon, and the breeze carries the faint sounds of cheering.  You can just begin to taste that victory cake.  But you can’t have it yet.  You’re still on the course.  Your heart is still pounding, your lungs breathing hard, and your body aching and straining. You’re closer than you were at the start, but you’re not there yet. You can do more than you used to, but not everything you did before your illness.  You can commit to some things, but not everything you want to commit to. 

It’s hard to stay on the course.  Does the finish line even exist?  Or have you been lied to?  It’s tempting to just sit down and give up.  Banish those thoughts of perfect healing, forget about the victory cake, just give up.  But over the next hill, around the next obstacle, there’s a crowd waiting to cheer you on.  There’s a golden badge with “Hero” etched in it, waiting for you to claim it.  That red ribbon is waiting to be broken.

So don’t give up.  Don’t stop your hard work.  Keep on fighting, keep on healing, because someday you’ll cross the finish line.  And all the other fighters still in the throes of healing will cheer you on, and rejoice with you, and think maybe, just maybe, “I can do it too.”

~LymeDiseaseWarrior
lymelightfight@gmail.com

Tired of Fighting

I’m getting really tired of fighting Lyme. It’s not that I’m dealing with really bad symptoms, in fact, I’m feeling great and have only a couple things bothering me these days. I’m feeling well, but I still have to take the pills and get the blood tests and go to the appointments. And I’m tired. I’m so tired of fighting. I want to move on in life and put illness, and pills, and symptoms, and appointments, and blood draws, and the constant hassle of a chronic illness behind me.

I’m ready to have an easy life. Easy compared to the life I’ve had these past six years. A life where my worries are job, school, and family, and not chronic illness.

Next Wednesday I meet with my Lyme Doc. And I really want her to say that she thinks I’m done with Lyme, and that I’m ready to try going without my pills to see if my symptoms are gone for good. But I know there’s still a couple symptoms I’m having that I shouldn’t be having if I didn’t have Lyme. And it’s discouraging. I really want to be done.

Please pray for me as I go to my next appointment. Please pray for wisdom for my doctor, as we decide what steps to take next. Please be praying for my recovery to be soon and complete. And most importantly, please pray for my patience and endurance. Fighting a tough battle was hard. But this languishing between healthy and not healthy and feeling stuck there is frustrating and weary.

~LymeDiseaseWarrior

Beat the Heat! Ten Ways to Survive the Summer with a Chonic Illness

I look forward to summer every year.  The sunshine, the leisure days, the popsicles and flip-flops!  But as soon as summer hits, I am unpleasantly reminded that summer is hot.  And heat is a mortal enemy for those with a chronic illness.  Heat exacerbates existing symptoms, and can bring with it it’s own set, for those who are particularly heat-sensitive.  It can increase pain, dizziness, nausea, palpitations, and fatigue.  It can be dangerous, causing fainting and heat strokes!

Yet, we don’t have to be idle victims of the heat.  By thinking proactively, we can develop a plan to beat the heat this summer!  So without further ado, here are ten ways to survive the heat this summer:

1. Air Conditioning

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The beauty of air-conditioning is that it can keep your environment at a consistent temperature.  Or by turning the knob back and forth you can make it colder, then hotter; back and forth to suit the whims of your body chemistry.  Putting in an AC unit, or purchasing a mobile one can be a bit of an expense, but it is thoroughly worth it.  If the funds can’t be found, however, you can see if your Doc can write a prescription for the AC unit.  Then it might be possible to write it off as a medical expense for taxes.

2. Ice Packs

dog with ice pack

Keep your freezer stocked with ice packs at all times.  Whenever you go somewhere, be it to work, the doctor’s office, or to a graduation; bring a few ice packs in a small lunch cooler.  When it starts to get hot, you can put one on your neck and be instantly cooler.  You can use re-filled plastic water bottles in a pinch, but an ice pack will not ‘sweat’ as it melts.

To save on money, you could even make your own:

3. Strategically placed fans

fan owl

I always have a fan right by my head when I sleep.  If I get hot at night, I just have to reach over and switch it on.  I don’t even have to get up.  :)  If you can afford it, buy a few fans to distribute around your house.  Have one placed next to where you spend most of your time; such as the couch or at a desk.  Have one for the bathroom, and one (or even two) for the bedroom.  The advantage of fans over air conditioning, is that you can direct the artificial breeze to specific points of your body, whereas air conditioning blasts cold indiscriminately.  This is helpful for illnesses such as Lyme disease, where one half of your body can be raging hot at the same time as the other half being ice cold.

handheld fan

Keeping a miniature fan in your purse for when you go out and about would be another great idea.  If you start to overheat in the middle of a store or when you’re waiting in a doctor’s office, you can simply pull out the fan and have instant relief.  :)

4. Cold Showers

cold shower dog

As soon as the weather goes over 85 degrees (Fahrenheit, not Celsius), I ditch hot showers and go for cold.  Or at least lukewarm.  :)  When it gets really hot, I’ll take three showers a day!  One in the morning, and then again in the afternoon, and right before bed.  This helps release all the hot air I’ve trapped in my body, and bring my temperature down.  Showering can take up a lot of spoons (see: spoon theory), but you can conserve energy by keeping two of the showers to just rinsing off and leave the scrubbing for one shower.  If standing is difficult, you could see about installing a bench or chair to relax as you rinse off.

5. Increase Water Intake!

elephant drinking water

When it comes to how much water you should drink, the answer is always “More!”  Dehydration will bring on fatigue, nausea, and dizziness faster than you’d think.  With the sun and heat of summer time, our bodies need even more water than it normally does.  If you have trouble remembering to drink water, try an app for your phone or tablet that will remind you to drink water.  (such as what is suggested in this post)  I found it’s helpful to have a special cup for water that I can refill over and over again.  :)

6. Stay in the Shade and Wear a Hat!

big hat

Staying out from under the sun will cut back on rising body temperatures.  Staying indoors can accomplish this, but if you choose to go out for a little league game, or to lounge at the beach, it’s important to protect yourself.  Sunscreen is great for protecting your skin, but a hat or umbrella can keep your temperature down as well.  So make sure that a hat and sunglasses makes it on your list of things to pack for fun events this summer!

7. Mist and Spray

spray bottle

I have a spray bottle that I use at home whenever I get too hot.  Just a quick spritz on my head and face, and it feels so good!  You can carry a small one with you when you go places, or you could get a misting fan, and then you don’t have to add another thing to carry.  :)

8. Frozen Treats

smoothie

If your illness doesn’t allow for sugar in your diet, you can still have a number of frozen treats.  Bags of frozen fruit can be purchased for cheap at a grocery store, then whizzed in a blender with yogurt or milk.  Viola!  Frozen treat. :)  The same can be applied for green smoothies, simply freeze one of the ingredients (such as milk) in an ice cube tray before throwing it in the smoothie.  Iced tea is another way to cool down with something tasty.  :)

9. Plan Outings during the cooler hours

sunset

Schedule doctor’s appointments in the morning or in the late afternoon, avoiding the peak hours for heat.  Save grocery shopping for after dinner, and take a nap in a cool room in the afternoon instead.  Being out and about during the peak hours can increase risk for a heat stroke.

10.  Save Hot Tasks for cool hours.

dishes in sink

Tasks that will heat up the house should be saved for early morning or later evening.  Running a dishwasher, cooking, vacuuming; any activity that produces heat will heat up the house and is better left to a time when it won’t overwhelm the temperature.  Tasks that heat you up, such as a hot shower, hand-washing dishes, mopping, or exercise, should be done in the cool hours as well.  This will save yourself the discomfort of overheating your body.

Well there you have it!  You can now stay cool during the heat of the summer.  :)  If you have any tips to add to the list, comment below!

Blessings,

~LymeDiseaseWarrior

lymelightfight@gmail.com

9 Must-Have Apps for a Chronic Illness

A chronic illness is never easy to manage, but with today’s modern technology, we have a little help.  Below I have listed several apps that I have used and found useful.  Look through the list and see if there’s something here that could make your life easier; and if you don’t see one that should be on the list, comment or email me and I’ll try it out.  :)

1. Water Your Body

water your body

I loved this app.  It has a simple interface, you select the container size you normally drink water from then just tap on the icon every time you drink water.  When you start, it asks for your weight and gives you an exact amount of water you should be drinking every day based on your size.  If you aren’t drinking enough, it will send you little reminders that pop up on your phone telling you to drink water.  :)  And you get to track your progress from a daily or week to week basis.  And did I mention you can change it from liters to ounces?  Handy for us American folks.  :)

2. CVS Pharmacy App

CVS pharmacy app

This app has saved my life many times over.  Okay, it hasn’t literally saved my life, but it has made it a lot easier!  I have all my medications at my fingertips.  When I need to refill prescriptions, I just tap-tap-tap and in a couple days they are ready for pick up!  :)  Before using the app, you have to have an account set up online and you have to use their pharmacy (obviously. . .).  What’s really handy is when you go to a doctor’s office and the nurse asks for a list of your medications.  You can just open the app and hand over your phone!  For someone like me who has as ton of meds, this app eliminates the awkward spelling bee between you and the nurse.  Plus, if you don’t like making phone calls, you can use the app to order your meds. :)

3. Medisafe Medication Reminder

MediSafe

I wish I had this app when I started taking pills for Lyme disease last year.  I was really bad at remembering to take my pills when I started out.  I’ve gotten better about it since then, but having an app like Medisafe makes it even easier!  So easy, that I now only miss my pills if I consciously choose not to take them (oops. . . )  Like any other pill reminder app, Medisafe pops up with little reminders whenever it’s time to take your medications.  But the nice thing about medisafe is that each individual pill pops up on your phone, and you can hit “snooze”, “take”, or “skip”.  Snooze is nice if you’re in the middle of something and want to take them a little later, as the app will remind you again.  And if you take some but skip others, medisafe will keep track of what you’ve skipped.

When you open the app itself, it has a little pill box with four corners in it for morning, afternoon, evening and night.  I can add in all my pills, including the name, dosage, and food instructions. My favorite part: I can customize each pill to it’s shape and color!  Each pill I add appears in my pill box. :)  Once I’ve added all my pills, I don’t even have to touch the app.  It takes a load off my back without being intrusive to my life.

4. Google Maps

google maps app

I DON’T HAVE A SENSE OF DIRECTION.  And sometimes I forget where I was going.  If you don’t know, Google Maps is basically a GPS for your phone, but it works better than the GPS you might buy at a store.  I use it ALL the time to tell me where I’m going.  It is particularly helpful when I’m hitching a ride from somebody and they ask me how to get back to my house, and I suddenly blank.  Instead of the awkwardness that follows, I just pull out my phone and say, “this thing can tell you better than me.”  :)

5. Period Tracker

period tracker

Okay ladies, I know we’ve all experienced this.  We’re waiting in the exam room and the nurse asks us, “When did you have your last period?” *awkward pause*  I can’t remember.  And now I don’t have to!  Furthermore, I can keep track of when it’s coming in the future.  Which can help explain symptoms that appear before hand.  So I don’t get all panicked that my joints hurt a ton more, because I can look at my tracker app and know that, hey!  That’s why my joints hurt!  One thing that sets Period Tracker apart from other period tracker apps is that period tracker lets you keep track of your symptoms daily AND you can add notes.  :)  I haven’t figured out why I’d want to keep track of this information, but for someone else who may be monitoring thyroid symptoms, etc.  this may be a useful feature.  :)

6. Keep (by Google)

google keep

This, combined with Google Calender, is what I call ‘my brain.’  If somebody asks me something I should know or tells me something I should remember, I say “Hold on, I have to open my brain.”  I keep a list of blog post ideas, questions to ask my boyfriend, things to remember to tell my doc at my next appointment, and a big long list of tasks of everything I need to do.  Keep makes it easy to keep everything organized by color-coding, and different format options.  You can write notes, make a checklist, or even pin pictures.  And you can simply touch and drag to rearrange the notes.  I think the main reason I love Keep is that it saves automatically as you write.  So if your finger slips and you exit a note prematurely, you can just open it up and start where you left off. That sets it apart from the notepad app that came with my phone, I lost a number of blog posts I’d started planning out all because I didn’t hit ‘save’ before exiting.  Keep doesn’t do that. :)

7. Daily Yoga App

daily yoga

I suck at exercising.  I suck at motivating myself to exercise.  And I suck at remembering to exercise.  Enter: Daily Yoga App!  After downloading the main app, you can choose from a wide range of plugins that feature sitting routines, lying poses, etc.  (I’m fond of the ones that don’t involve standing.)  When you click on a routine, it tells you how long it’s going to last (usually 15-30 mins) and then it goes through each pose one by one with voice instructions and a video to see how it’s done.  The speaker has an accent, but it’s not too hard to understand.  The only point of caution I have for this App is that the guy showing the moves is, um, more flexible than I ever will be.  So don’t hurt yourself trying to follow him as he does a perfect split and puts his chest on the floor, okay?  :)  Only do as much as you can do and only stretch as far as you feel comfortable.  If it hurts, don’t do it!  :)

8. Google Calendar

google calendar app

I should have listed this after Keep.  Oh well.  I LOVE Google Calendar.  It is the second part of my brain, Keep being the first.  I put in all the events of my busy life and it sends me reminders when they are happening soon!  I can even set multiple reminders and have them set for earlier times.  If I put in the wrong start time for an event, I can just touch and drag it down the calendar to a later time.  No more over-booking and scheduling conflicts!  When someone asks if I’m available I can simply pull out my phone and pull up my calendar to check before I commit.  :)  And as soon as I’ve checked and I commit to the event, I tap it in right there and then so I don’t even have to remember it for five seconds.  Beautiful.  An absent-minded person’s dream!  ^_^  And you can sync it to your Google Calendar on the computer, so you literally have it available all the time. :)

9. Solitaire by Mobility Ware

solitarie app

Useful for waiting in doctor’s offices, because I often don’t remember to grab a book.  What I like about Solitaire by Mobility Ware is that it has the option of a ‘winning deal’, which means that if you play the cards right it IS possible to win.  :)  I suppose you could use any game, really, but make sure you have at least one game!  I once had to wait for over three hours for an appointment to which I had arrived on time!

Well, that’s my list.  If you have an app you like to use and notice that it’s missing from the list, go ahead and comment below or shoot me an email.  If I get enough suggestions, I might have to write another post!  :D

UPDATE:  I should have mentioned before, but all of these apps were ones that I downloaded free through the Google Play Store on my phone.   They may or may not be available for free on your particular model/service plan. :)

Blessings,

~LymeDiseaseWarrior

P.S. Questions?  Comments?  Stories to share?  You can email me at: lymelightfight@gmail.com :)

Updates Galore!

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In my last post I announced the eventual fulfillment of my childhood dream: going to Thailand on a mission trip!  :)  Well, since April 1st I’ve had a garage sale/bake sale and received multiple donations.  All totaled together, I’ve raised enough to cover the cost of the airfare–about $1,200.  :D  Thank you so much to everyone who has contributed, whether it be financial or prayers, I greatly appreciate all your support.  :)  I now have until August 1st to raise the rest of the money, about $800.  I’ll be having another garage sale/bake sale soon (it’s not on the calendar yet).  Until then, or if you can’t make it out to the sale, you can donate through my donation page on Fundly: https://fundly.com/thailand-mission-s-trip.  Note:  You’ll see on the page a lower amount than what has been raised, due to the fact that some donations were given through my church.  I will update the page soon to reflect the full amount. :)

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The other thing that has happened since my last post is that I had another appointment with my LLMD!  She is so wonderful.  ^_^  And as a rare treat, she wasn’t running behind this time!!  O.O  The most important points from the appointment are:

- I have POTS.  (Postural Orthastatic Tachycardia Syndrome)  Which has something to do with my blood pressure going wacky when I’m standing or sitting up.  Which explains my dizziness.  And now that I know why I’m dizzy, I can do something about it!  :D  I’ve done a little researching into POTS and it seems increasing my fluids is supposed to help.  Also, if I feel really dizzy, I just lay down for a while and then I feel much better.  :)

-I have a genetic mutation making it more difficult for my body to get rid of Lyme, especially in my joints.  Basically, I took this genetic test that mapped my entire genome.  My doc and I went over the results, and I have a number of mutations that affect my ability to detox, to flush toxins out of my body.  One particular mutation affects my ability to reduce inflammation in my joints, which accounts for the lingering joint pain.  So!  I’m getting put on a bunch of new supplements geared towards helping my body detox and building up my joints.  Among them are zinc, manganese, and a bunch of other things I don’t remember. 

-So!  All in all, I’m back on track when it comes to recovery.  Hopefully these added supplements will help me keep the current goal of getting better by August.  At the very least, I should be sooooo close to recovery by the time of my Thailand trip in October, that I will not be hindered in anyway to fully participate on this trip.  :D

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Finally, it IS Lyme Disease Awareness Month!  So!  I have been preparing a special project for you, my followers, and everyone else on the internet!  ^_^  It’s almost done.  I may even finish it tonight.  And when I do, I will post it for y’all to enjoy.  :)

Blessings,

~LymeDiseaseWarrior

P.S.  Questions?  Stories to share?  Comment below or send me an email: lymelightfight@gmail.com

Thailand: The Realization of a Dream

In my last post, I announced that something ‘big’ was coming.  And indeed, it is very big.

I am going to Thailand.  THAILAND.  I’m on a team with six other individuals from my church!  We depart in October for two weeks.  :)  We will be teaching English language workshops at a christian camp in northern Thailand.

IMG_3521

In my “Wishes” post back in September of last year and in my “I’m Like a Little Kid Again” post back in November, you’ll find that going to Thailand has been a dream of mine for a very, very long time.  Indeed, since I was nine years old I dreamed of going to Thailand on a mission’s trip, spreading the Gospel and helping the missionaries my church supports there.  I read every book the children’s department of my library had on Thailand.  I even went so far as to make several attempts to teach myself the Thai language!  :D

When I became old enough to go on the trips with my church, I couldn’t.  I had caught Lyme disease and I could no longer entertain plans of international travel.  Heh, I could barely keep my head above water for normal life.  But a year and a half ago, I finally received my diagnosis of Lyme and started on treatment of high doses of antibiotics.  It was a rough time with many ups and downs, but here I am a year and a half later and I’m nearly fully recovered.  I have only a few months left.  Just in time too, because the trip is THIS October!  :D  I am so close to 100% now that even if my recovery date is pushed back again past the trip, I will still be able to go and fully participate in everything.  Lyme will not be holding me back this time!

IMG_4068

In order to go, though, I need to raise the funds for the trip.  In total, I need $2,000; this will cover airfare, travel expenses, food, lodging, etc.  I have to have raised half of that (1,000) by May 1st, in order to purchase my ticket. I’ll need the total sum by August 1st.  If you would like to donate, please check out my Fundly page!  Follow this link:  http://www.fundly.com/thailand-mission-s-trip

All the funds will go directly to my church, who is handling the finances of this trip.  If for any reason this trip is canceled, (by some unforeseen tragedy or political crisis, etc.)  the money will be kept in a fund at my church for future church mission’s trips.

I will be posting updates as we prepare for the trip, and of course I’ll post about the trip when I go!  :D  If you have any questions, please comment here or send me an email: lymelightfight@gmail.com

That’s all for now.  :)  I’m so excited I can’t contain it.  I’m tearing up just as I write this post. . . .  I can’t wait to go and to tell you all about it!

Blessings,

~Beth

 

 

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