cloudy with a chance of sunshine

Let's see, for at least a month, maybe even longer, I have basically had cloudy skies over my head.  I'd been doing "better" and enjoying it and then started the new meds. Bring in the clouds.  I should have KNOWN -- I mean, it happens EVERY time.  Every new protocol seems to target something else or take a different approach to trick those little Lyme "bugs" into surrendering.  It's a GOOD thing for my body, just demoralizing for my soul.  Especially after feeling like I made a huge improvement before.

It's been hard to be creative enough to blog; hard to be creative enough to make my daughters stay happy and entertained during the day......basically I've been dragging my feet with my head full of sludge.  I think most of it is the meds and herxing.  Some of it was anxiety about my daughter's Lyme test (which turned out to be Indeterminate....herm) and what to do after that news (we're praying about it and think we know which direction we're going to go with this).  And possibly the holiday "stress".  Our Thanksgiving wasn't stressful at all but there is some subconscious "stress" that goes on when hosting.

Here I am in the middle of my second week of meds before a two week break and today was the FIRST day in a month+ where I had the blessing of feeling some sunshine.  My head is clearer, my kids are happier, and I just feel grateful for even the shortest of reprieves from how I've been feeling. Even if it leaves tomorrow, I'm hoping I will still be grateful that I had this one day after many long, bad ones.

I'm enjoying the holiday season.  We decorated for Christmas in our house and as December rolls in tomorrow, we will count the days off until we get to see our extended family.  It will be the first trip we've made as a family since last Christmas.  We usually take a Summer vacation but I was too ill this year.  We've felt a bit cooped up because of that.  So I know that all of us will feel wonderful and each get a rejuvenation not having to be in our house faced with my disease all the day long.

I know I'll still be ill and feel ill during our holiday, but sometimes the extra laughs you get being around your funny brothers, and the extra hugs from moms and dads will help.  And girl time with sister will make me feel a little more "normal" too.  And the list goes on.

So anyway - the sunshine today is welcome warmth for my soul and I know God gives me those encouragements just when I need them.

not as planned

I've been struggling to write anything lately on this blog because I've been feeling pretty rotten.  My life on this day is not as I had planned.  I had hoped to be doing really well with this new round of meds so that Thanksgiving would be easy-peasy to prepare for.  But it has not been; my body is not cooperating. And on top of that, dealing with very needy children and also one of them being sick (ultimately pneumonia!).  Sometimes children are more wanting than usual.  More wanting of attention, discipline, boundaries....those are all things that are so hard to do for your kids when you're so sick you can hardly move or when talking is too fatiguing.

But sometimes when you are THIS sick, you have to set your priorities.  You might have to choose ONE task out of MANY that are calling you to do them because your body literally cannot handle more than one.  I've tried to make my kids the one thing I do lately.  There are some seasons where they do not need as much of me and there are others (like lately) where they really, really need their Mama to love and to guide them.

The problem with THIS priority is that it drains me more than any other.  Children are such an investment.  But such a rich one. I never have regretted having them, even when I'm my sickest.  They are a blessing and it's such an honor and blessing to me to have been entrusted with them to care for and raise (along with my husband by my side).  I know not all moms get to stay home with their kids so I don't take it lightly that my affliction has made it so that I MUST stay home.  I am thankful.

Friends keep asking me, "Can't you just skip this week's treatment or move it to another week?".  Maybe.  But in the grand scheme of fighting this disease, it means more to me to keep fighting, even if it means feeling bad on holidays; because the feeling bad is usually a good indicator that we're on to something.  I want to keep the momentum going and kill as many little "bugs" as possible so that I can be well sooner.

I'll tell you what has gone according to my "plan" so far -- my appetite is still here!  No nausea in sight.  I'm praying this will last through Thursday so that I can feast upon all the delicious food we're having!

Have a happy Thanksgiving!

like it shouldn't be week two

.....of my off weeks.  For the last month or two, as soon as I hit the Monday after my two weeks of meds, I feel pretty good.  The lymphatic drainage massage has helped and I seem to have usually detoxed pretty well so that by the second Monday of my two weeks off of meds, I am feeling great.  I start to plateau on the Sunday before I start meds up again.

But this round?  I have felt more run-down than usual.  Super sleepy which is not normal for me (I have energy problems but not sleepy problems), minor pain in my joints, slow brain, and low low energy.

It's been a huge disappointment.  It always is when things have been going great for a while.  This is the first "off weeks" of a new protocol.  So I guess I can blame that.  There was also a dosage mix-up two weeks ago where I took double the dose of one med all week (not entirely my fault since a nurse accidentally took my word for it when I called with a question about it instead of checking with the doctor).

But today, the first day of my second off week, in which I "should" be energetic and getting my house ready for Thanksgiving company, I am literally laid up on the couch with a knee and ankle that feel as though they are about to burst at any moment.  Have you ever had that throbbing joint/muscle pain that just feels like it's going to explode?  I've got two Lidoderm patches on my body and I may give in and just take some of the strong pain meds my doctor has prescribed for times like these.

Wow, it is so hard to find the joy in this.  My friend from out of state is here and I had hoped so much that instead of her just coming to help me (which she has), that since it was my "off weeks", we'd be playing it up.  We have had chances to do fun things but not in the way that I had hoped my body would feel while doing them.  We've gone shopping together, we went to Sea World with the rest of the family (me in the wheelchair), and we've gotten to enjoy a lot of Netflix together.

I think of all my major complaints that plague me - low energy, pain, and brain fog - it's hardest to find thankfulness in pain.  And I don't mean headaches and little joint pains here and there.  It's the blaring, loud, takes-you-off-your-feet pain that seems to keep me at a loss for God-ful thoughts.  I try to recall verses of encouragement and I just come up blank.

But I can remind myself of truths - that God hasn't abandoned me.  That He allows these trials for reasons we may never know, but that He'll never give us more than we can handle in them. That He is sovereign.  And that He is the true Comforter.

So while it's confusing to me in the scheme of my course of Lyme treatment to have a "set back", I have to just keep remembering that for Lyme, this is "normal", and that God is with me in every valley and every peak.

And for a laugh - this is what I look like when I think I'm taking a picture of sea lions but really
my camera phone is on reverse so it's taking a picture of me. :)

organized

I've been thinking lately about my detoxing habits and how the ones I do really do help.  But in the beginning I had no idea when or how to do these things so I thought it would be helpful to just give a bit of info on how I've been told to detox.

1. DE-CAFFEINATED Green Tea.  I do NOT care for green tea at ALL.  But my doctor keeps telling me that it's a great detoxifier, so I do it.  I drink about 2 mugs a day.  I heat it up, let it steep, then let it sit until it's room temp and then I just guzzle it.  That's the only way I can handle it. It contains lots of antioxidants that boost the production of detoxing agents in the body.

2. Epsom Salt Baths. This was one that I just really did NOT understand in the beginning.  I didn't know how much salt to put in, and I was told to add baking soda and hydrogen peroxide to the water.  I tried all different combinations and now I think I've got it down.
                     -Run water as warm as you can stand (but if you can't, then lukewarm is fine).
                     -Add about 1 1/2 cups of Epsom salt, 1/2 cup of baking soda, and 1/4 cup of hydrogen peroxide to the running water.  I usually just eye-ball it.
                    -Once bath is filled, sit in it with as much of your body covered by the water.
                    -Stay in as long as you can stand it, but NO LONGER THAN 20 MINUTES.
                   -If you are dizzy or really weak, make sure you have someone there to help you out of the tub.  In the early days my husband always had to help me because I literally would faint if I stood up.

                    So my recommendation is to do this only every OTHER day, never two consecutive nights in a row.  Also, it truly zaps me and makes me feel pretty awful right afterward, so I save this for right before bed.  That way I can rest and sleep it off.  The warm bath also makes you kind of sleepy so it helps to do right before bed in that regard.  I wake up and feel better after these baths.

3. Lymphatic Drainage Massage.  I've gone through a few different masseuses who do this type of massage.  You really have to find one you're comfortable with and seeing as some do different types (the type they were trained in), you might find that some work better for your body than others.  I only every get this done at the END of a treatment week.  It really gets your lymph system flowing, helping to detox all those nasty toxins that are released when the little buggers are being killed.
               So for example, I do meds M-F.  So I get the massage done on Saturday morning.  I can't tell you how much this helps me.  Of all the detoxing things I do, this helps me the most.  I notice a difference right away - more energy and less pain.  Make sure to drink lots of water before and all day after.  I also take it real easy the day of the massage just so I don't overdo it.  I can seem to feel so good that I want to do tons of stuff but I find that if I do, then I crash.  If I ease into being active after these massages, I feel a lot better.

4. Broccoli and Chicken.  Broccoli is a WONDERFUL detoxing food.  We eat a lot of it here and thankfully my kids like it too!  Also, if you aren't vegetarian and you can avoid red meat, choose chicken. Both of these foods (and some others) contain selenium which produces an enzyme that "guides" the body to detox.

5. Drink LOTS of water.  What comes in, must come out and with it comes toxins. If you drink caffeine, make sure you drink a glass of water to match it because it has been said that caffeine can stimulate urination.

6. Exercising.  This one is hard for us Lymies.  Especially those of us who have zero energy.  Just do what you can.  Sometimes this means a quick 30 second bounce on my mini-trampoline.  We also bought recumbent bike pedals....I sit on the couch (or slouch some days) and just pedal at my own speed as long as I can without wearing myself out.  Working out your legs helps  strengthen your heart.  So it's good all around.  When I have even more energy (not as often), I take the kids out for a spin around the block.  Pushing one or both of them in the stroller helps raise my heart rate.
Also, sweating is a wonderful way to detox. So exercising can be a path to that.

Now in addition to all of this, I take some supplements that also help - CoQ10, Magnesium Malate, Acetyl-L-Carnatine, and Ultimate Omega.

Being "aggressive" in detoxing can make a huge difference in the kind of week I have when I'm on meds.

What are your favorite detoxing methods?

biding

The time finally came.  I hoped it never would.  I think every mother who was infected and bore children worries about it.  For a while now we've noticed symptoms in our oldest daughter.  Mild, but alarming to our Lyme-savvy minds.  Lyme can be transmitted in the womb and I most definitely was infected when I was pregnant with both of my children.  I just didn't know it.

My wonderful doctor told us not to worry and to just wait and watch. And to assume symptoms that may arise might be related to other childhood things.   He said, "You'll know when you need to check it out."

We most definitely know.  It took a while to be able to test her because this great state I live in has driven out almost every Lyme-literate physician.  We ran into dead walls with her pediatrician.  Through online research and an online friend referring me to someone an hour and a half away from us who TESTS but does not TREAT, we were able to finally get our little one tested.

And now we bide our time.  It will take 2-4 weeks to get the results. I am unnaturally at peace and I know why. We specifically asked a friend on Sunday to pray for us that we would be calm and not anxious.

My husband is a great reminder to me to just take each day at a time.  When I let my mind wander too far into the future and into the "what-ifs", I can get easily overwhelmed.  He's right.  It doesn't do any good to wonder because it harms my body's trying to kill the yucks inside of me right now. One day at a time.

So when you think of it, please pray for our daughter.  Pray that she does NOT have Lyme.  I know that is possible!

thankful

.....as I compare this year to last year.

Last year when we went trick-or-treating, our little family looked like this:

This year?  Well, we didn't get a family picture, but I can tell you that I was NOT in a wheelchair.  I walked.....the whole time.  Doesn't mean there weren't issues (too gory to discuss), but I DID walk.  I was so thankful!  I love looking back a year ago and comparing it to this time this year.  It's encouraging, even with small setbacks to see that my body is becoming healthy again.

Last year my girls were a dragon, and a giraffe.  This year they were a puppy and a princess and we could ALL walk :)