Friday, December 31, 2010

trapped

As many Lymies feel at one point or another, I feel trapped in my body.  I WANT to get up and help with dishes.  I WANT to bend down and pick up my 9 month old.  I WANT to hold and hug my 3 year old.  But I can't.  There are moments where I want to move that I just plain can't muster the energy to move!  Trapped.

Another time I feel trapped is when I have a "seizure" (I say this loosely because I really don't know what type of seizure I'm having and all I know is that it's Lyme related).  A relative recently asked me to describe the whole "happening" of a recent seizure (I haven't had one like this since the summer...I think the stress of traveling and the holidays overloaded my system and caused a meltdown this time).

Here's how I described it to her:


Well normally my tremors are just on my right side.  My right arm and shoulder really. And if it gets really bad then my head will jerk too.  But that is a once or twice occurrence each week so we don't worry about it.  But the "seizure" thing that happened the other night hasn't happened since the summer, and that is different.  


I could FEEL one was going to come.  Matt was going to put Georgie to bed and before he left, my LEFT hand did a weird thing.  My left side never does anything weird so it confused me.  I had JUST put my antibiotics in my mouth and swallowed them, but they can't kill stuff THAT fast to cause a seizure so we think the seizure was just because of a nervous system overload.  

My left pinky curled up in a grotesque position and just stayed there and my left arm jerked and then my right arm.  So Matt said, "Are you okay?" and I said I thought I was but I was getting this weird "feeling" I get before a big episode.  But it had been so long since I had had a "big one" so I thought maybe I could control it.

So he left the room.  I was sitting on the couch but no one was really "watching" me.  But they could have seen me if they had glanced over from other parts of the room but they were all occupied with dishes and such.

My arms jerked again and then started jerking pretty regularly along with my right leg so I got anxious and I felt like there was an elephant on my chest and my left arm was tingly down to my fingers and weird pains were in my right arm and legs.  So I knew it was going to get bad.  But I didn't have the energy to raise my voice for someone to get Matt.  I figured someone would look over and say, "Are you okay" because I was jerking.  But it just so happened I wasn't as visible to the people in the room as I thought.

THEN it escalated. My heart started beating SOOOOOOOOOO fast and I got SO scared that I couldn't speak and I had a lump in my throat and wanted to cry and yell for help.  And I was jerking REALLY bad.  Both arms and my head.  Finally after like 5 minutes of this Matt walked in and I looked at him and he said, "Do you need your medicine?" worriedly and I burst into tears which is something that happens with each HUGE seizure for some reason.  It's so weird.  It happens every time. I can't talk but I can cry.

So he ran to the other room to get the seizure medicine and then over to me and shoved it in my mouth and just tried to calm me down because that's what you're supposed to do.  But then it takes time for the med to work.  So he just kept saying, "Breathe" and "calm down" but I was hyperventilating and convulsing and jerking uncontrollably.  It was hard to catch my breath and my chest felt heavy. 

I think I convulsed for 20 minutes but for the last 10 I was able to breathe better. So it was just a matter of calming down and waiting for the jerking to stop.  The WHOLE time my eyes were closed and I just WISHED to pass out. It's a weird feeling. You want to pass out so badly and feel like you could at any moment but it never happens.

When the worst was over, all that happened were a few jerks every few seconds and my right leg would shudder violently every minute or so.  So strange.  Matt just stayed there rubbing my hands and stuff and telling me to calm down. I could finally talk but not well, sort of slurry, and I asked for a cold compress on my head. 

When it was over I was so weak I couldn't move.  I just lay there pale and completely still.  Matt offered to move me to bed but I was so afraid to move because I still felt "weird".  So I lay there for 30 minutes stone cold before we finally moved to bed.

Thankful for a God who knows and formed my body and has created it to help me fight this disease.  No matter how trapped I feel, I know that my Creator knows how I feel and is here to give me peace amid anxious moments.

Tuesday, December 28, 2010

restful

"Contentment is a disposition of mind in which we rest satisfied with the will of God respecting our temporal affairs without hard thoughts or hard speeches concerning His allotments and without any sinful desire for a change. It submissively receives what is given. It thankfully enjoys present mercies. It leaves the future in the hands of unerring wisdom." (Plumer) 

ill

I am so very ill.  We're not sure why.  I mean, we know why (Lyme), but I haven't been this incapacitated for a long while.  I am needing help walking from room to room whereas before I could usually  make it between rooms by myself except for maybe on really bad days.  This is EVERY day so far.  I've taken a few falls and in general I just feel awful all over - inside and out.  It's so hard to feel this way!!!  We are hoping I'll be strong enough to travel in a week or so when we make the move to Texas.  So please pray my strength will increase even just a little over the next week!  We know God is sovereign over our time here and our travels and that He cares for us, so whatever He has for us in the next week or two we will do!


I fell in the shower the other day.  Then after the shower/getting dressed process I couldn't even walk by myself.  I just sat in the hall waiting for someone to see me because I didn't really have the energy to call out.  Then when I got help to walk just a few feet I was shaking the whole time.


And all this and I wasn't even on antibiotics that week!  So frustrating.  It must have been traveling.  And now I'm on antibiotics again and gearing up to travel/move into our new home state and search for a house.


In the top 5 stressors of life are:
Moving
Traveling
Kids


BAM, BAM, BAM


Please, please pray I can regain some strength before moving on to our next destination.

Wednesday, December 15, 2010

like a deflated balloon

Made it through traveling.  Thankfully the plane ride was only 2 and some hours.  Little Livie was pretty good.  She only fussed as we were about to land.  Mainly she was a wiggly worm the whole time so that took up what energy I really didn't have.

First time I traveled in a wheelchair and I gotta say, it is THE way to travel!  You get to the first of the security line and get on the plane first....I suppose there is ONE perk I can think of to this crud of a situation of Lyme that I'm in :)

Too weary to write more.  Just wanted to update.

Tuesday, December 14, 2010

Blue

It's a hard life. That saying has been in our family for a while.  Even our 3 1/2 year old will say it.  She'll be crying about who knows what and you'll ask, "what's wrong?" and the answer is sometimes, "It's just a hard wife."  It usually means you're down or that life is hard right now.

Well, it is hard right now for us.  We have to say goodbye to Washington.  Oh how we loved it up here.  We got used to the weather, learned it was improper etiquette to use an umbrella even though it was raining, learned there's a coffee shop or kiosk on every corner (and also incidentally learned much about what truly makes a good cup of coffee), and so much more.

But what truly makes it hard to leave is leaving our wonderful church family.  You might not know if you haven't lived more than one place before, but it is HARD to find a "good" church.  And by good I mean, one that preaches the truth accurately.  An added bonus would be a good kids program/nursery.  And another added bonus would be friendly faces who welcome you on your first day and then become good friends to the day you have to leave.  We found ALL of those in our church up here.  I just was blown away by the love and concern that was given to us in those first few weeks we were living here by people who only had the commonality of the love of God to share with us at first.  I was pregnant with Georgie and ran into those kidney stones, and then health problems right away after her birth, etc.  They have always volunteered to help us in ways we most need, even without us asking.

And of course there were some families we grew even closer to and it is just SO hard saying goodbye.  I'm glad I have good things to look forward to in the next few days/weeks because if we were leaving to our final destination many states away today, I would be bawling my eyes out.  We have such good friends up here both in the Army and from church and it will be really hard to leave knowing we might not see them again.

On the other hand, I am so thankful we have modern technology.  Facebook, blogs, even Skype to keep up with people.  

Here's how you can pray for us in the next days as we get to go visit family before finally ending up at our new home:

-Livie and I are going to fly to Los Angeles tomorrow at around 1pm.  Please, please pray that Olivia will be an angel of a baby for me.  It's hard enough on my body to fly and travel, JUST after "moving" (getting packed and stuff), so any antics from the little munch will really wear me down.  Pray that my body won't freak out on me (like having seizures, etc) while traveling.  Thankfully it's a short flight and I'll have the wheelchair for airport to-and-from's.

-Pray for Matt as he still has business to finish up here before he can leave, AS WELL as, cleaning our empty apartment before he can leave.  I had no energy to do this.  So it's left to him.  

-Pray for Matt he hopefully begins his journey via car down to Los Angeles on Saturday morning.  Safe travels!

-Be praying that right now God would prepare a church and people in the church to be compassionate on us and be led to serve us as we are ailing as a family and need help in the next year.

We are trusting Him and have seen Him bring so many good things into our lives and work out all the details according to His plan so what should we worry!?

Looking forward to being reunited with my little Georgie tomorrow! :)

Monday, December 6, 2010

F A T I G U E D

It's funny (depending on how you look at it), one of the worst things to hear sometimes for someone who is chronically ill is "You look so good!" or "You're looking great!" because, when people say that to me or comment about a picture of me, I can remember exactly what I was feeling in that picture or at that moment and most times it wasn't my best day.  It's awful to suffer from a disease that makes you feel so terribly awful and yet doesn't necessarily make you LOOK sick.

I know all of those people who say I look good mean well.  And really, what else would I want them to say?  I look bad?  Oh THANK you for telling me!  That's just how I feel!  No. I guess what I'd like to hear is, "I know you're still suffering and must be feeling awful, but you are still looking good." or something like that.  I know it's unfair to expect that because honestly, I rarely post pictures of myself without makeup, in sweats, and feeling sickly on the couch (which is most days).  I post pictures when I do look good. So I shouldn't complain.  Chronic illness is hard to understand unless you've gone through it. *sigh* I really shouldn't complain.  Hearing a compliment is a nice thing.....even when you're sick :)

The picture here is from this weekend.  I was just coming off of a "good" week (no antibiotics).  We had been invited to a murder mystery party.  Fun.  1940's theme.    It was a lot of fun but I wasn't feeling great.  I was feeling better than I do while I'm on antibiotics, and no, I didn't need the wheelchair, but in all reality I was feeling pretty bad.

Thankfully, though, even while feeling bad, I was able to enjoy myself.  The party was fun and I'm glad I decided to go.

This time without our oldest daughter (who is out of state with Grandma and Grandpa) gone has indeed proven to give me more rest.  It doesn't make me feel better physically but I am able to rest more and the stress on my system has been lightened.  We are seeing more and more that it was the right decision to send her.  And soon I will see her!  Counting down the days :)  She is having fun with her loving grandparents and aunts and uncles and cousins.  We Skype every night.  Love it.

I had an appointment with my doctor.  He said I am making progress, but as many of you know, killing this complicated disease is a LONG process.  He wanted to start me on Babesia treatment (a co-infection of Lyme) but because we are about to travel/move out of state in the next couple of weeks, he doesn't want to shock my system with something new.  So I will stick with the treatment I've been on (same drugs, same timing - 2 weeks on, 1 week off).  Means I'll have an "off" week the week of Christmas!!  :)

Speaking of the holidays,  I have a question for you all.  It might just add some cheer to your day if you're suffering like am.

What was the most memorable (good or bad) holiday you had and why?


I'll tell you mine in the comments.  :)

Wednesday, November 24, 2010

Thankful

I  have much to be thankful for this year.  I'll admit that while being sick it can often be hard to feel anything close to thankful for anything having to do with my sickness, but I'm grateful He has helped me to see the many things I should be thankful for....including my sickness.
Anyway - I'll keep it simple.

1) My family.  I could have never asked for a better little family.  In fact, way back when, I couldn't even  imagine what my little family might look like and what a blessing they have been to me....so much more than I could have imagined.  God has provided two little joys to help us laugh when we need to laugh.  I just never expected motherhood to be so fun. Yes, even though being ill, I would still say that motherhood is the funnest job I have ever had.  Not saying there have been hard moments through it, and especially being ill and being a mother has been one of the hardest things I've done, but as a whole, it's been such a joy and pleasure that I can only attribute to our good God for giving us.

And under the family subject, I've got to say once again that I am so thankful for my husband.  Yet again, I can only attribute it to the wisdom and goodness of God that He would perfectly match me with my Matt.  I couldn't have seen ahead of time what kind of care-taker Matt would have been and now with this new job thrust upon him, he has done it so well and so above and beyond what I deserve.

2) This may seem obvious, but I am thankful for modern medicine.  Though this disease has a lot of things stacked against it (mainstream medically speaking), I'm thankful for those who seek the truth and seek to heal people like me, who truly need healing from a disease that the majority of doctors in the world believe is not a "real" sickness.  These doctors and nurses (some of them putting their careers and own finances on the line) are brave and compassionate and I could not be more thankful for them, because without them and the medicine they practice and prescribe, I would not have the hope of getting well.

3) And lastly, I am thankful for prayer. So many of my friends and family (and even people I don't know personally) are praying for me and for Matt and the girls and we just so appreciate that and believe that "the effective prayer of a righteous man can accomplish much." (James 5:16)  I am thankful that God has allowed those of us who know Him personally to approach His throne and make requests of Him.  We have most definitely felt uplifted in prayer since this whole Lyme ordeal started.  So thank you, Lord, for giving us prayer.

Hope you all have a wonderful Thanksgiving!!

Monday, November 15, 2010

Saturday, November 6, 2010

Trusting


*sigh*

I just haven't wanted to write this out.  It's just so sad.  But I know that if you know, you will be faithful to pray for us this next month or so.

Matt and I had to make one of the saddest decisions of our lives thus far recently.


Background:
When I'm on the antibiotic treatment (2 weeks on, 1 week off), I am almost completely incapacitated. This is why it was such a help to have my brother and his wife and niece come, then my sister, then my mom.....all of them helping so much with the kids and the house while I literally lay on the couch in misery.

Each round of antibiotics has gotten worse for me (as far as how I feel), and the last round just really did me in and my husband and I realized I just can't do this (sick and caring for two little ones) without help.  Unfortunately we don't have the means to hire a nanny.   And with the holidays afoot, we just can't expect our church family to take on our burden of a M-F 7:30am-6pm childcare service for our family.

After lots of prayers and thinking of different scenarios, we have decided the best course of action for now is that we send our oldest two states away to be with Grandma and Grandpa until Christmas.  Thankfully she feels so comfortable with them and loves their house and Oscar the dog. And all of my siblings are nearby to come take her on play dates.  And Matt's parents are nearby to love on her too. I know she'll be happy there.

It's just she's my little girl and I know her little heart and how she misses Momma after only one night away.  It makes me sad to think about it.  But we've already planned to do Skype every night and call each day.  Even sadder is losing the constant entertainment she is and the joy she brings to our lives.  We will miss her SO much!  When we first decided upon this I cried for a couple hours I think.  And in the decision making process I cried a lot too.  But what encouraged me a lot was that Matt was very insistant that this is what would be best for our family right now.  How nice to have a strong leader as my husband!  I feel easy in trusting his judgement.

God has brought peace to our hearts about this now and we know He'll use this situation for our good.  And hopefully my body can really fight the Lyme spirochetes in a more efficient way since I will be able to rest more. (Our littlest is still little enough to sleep most of the day away and when she IS awake, she's very easy to care for).

I won't go into all our details of why we thought this was best, but just know we considered EVERYTHING else that we might be able to do to help and this truly was the best option.

It might be hard to understand -- how can someone be so sick that they can't at least "get by" during the day?  My family who was here can attest to the fact that even just walking from the couch to the bathroom took SO much out of me that I would end up tremoring on the couch afterward.  The latter end of each treatment week is the WORST for me.  Often by the time Matt gets home I need his help to walk.  I haven't really found a great way to relate how you feel when you're on this treatment.  The best I can come up with is maybe the worst flu you've ever had - weak, achy in your muscles and joints - except about 10x worse than that.  PLUS, you add horrible nausea, headaches, sensitivity to noise (there were times when my mom was here where she'd see me cringe when Georgie would come in the room to talk or when Olivia "yelled" to us to help her in a predicament.  Even the typing on a keyboard that my mom was doing for work was causing my whole body to hurt more), ZERO energy (too tired to even sit up unless I had properly rested for the occasion), balance problems, and pain...lots and lots of pain.  And that's not even all.  But it's enough to give you the idea.

It WILL be hard to care for just Baby Liv, but it will be MUCH easier to care for just her.  And I've already had some friends say they can occasionally come over and help with her or take her for a day sometimes.  So that will help us tremendously.  We'll take any help we can get.

Just goes to show you how awful this disease can be and the effects it has on the family.  Boy, we are SO thankful for supportive extended family (on both sides!!).  I know some suffering with Lyme who have family that just doesn't "believe" that you can get that sick or that Lyme is real.

So - brief timeline so you know how to pray - 
Nov. 8th - My mom is coming and graciously going to stay a whole week, helping as she did when she was here last week just so we can have an extra week with our little girl before saying goodbye for a month. Thanks, Dad for letting us have her again for a week!
Nov. 13th - They'll head down to Grandma's house together! 

Georgie is very excited about this. We don't talk about it much but we have told her in detail the plans of what is to come and she hasn't expressed any angst about it.  And she knows we'll see her again at "Christmas-time" (as much as a 3 1/2 year old can conceptually understand that timeline).

We head down to Grandma and Grandpa's for Christmas/moving-out-of-state (yes, the Army is moving us right around the holidays!) on Dec. 15th.  So it will be just about a month without our Georgie-girl with us.  I keep telling myself it's not that long and we have such technology today that we'll be able to "see" her every day.

-Please continue to pray for our family that God will continue to encourage us as we are often discouraged by how bad physically I am doing, and how sad we are to say goodbye to our little girl for a month.  
-And pray for Georgie that she will adapt well to being away from Mommy and Daddy and sister.  
-And pray for me that I can properly care for  Baby Olivia in the next few weeks.  
-And pray for Matt as he has the burden of working, preparing for a big move, and holding down the household chores and meals and such.  What a wonderful husband God gave me!  
-And pray that through this trial God would be glorified through our response to it and through our actions during it.

Thursday, October 28, 2010

Gagful

Yes, that is what I said.  I have a very sensitive gag-reflex.  Therefore, taking pills larger than an M&M usually presents a problem for me.  Especially when my tummy is feeling yucky.  Gotta ration the water to pill ratio so I'm not filling my belly with sloshy water.  It is quite the process.  And if you know anything about pills, just about ALL of them are larger than an M&M.

Seeing as my life right now is pretty much ALL about swallowing pills, I've just had to deal with it.  So far I haven't lost my stomach but I've got some silly tricks to let the pills go down when I feel like I'm about to gag.

My tried and true method is to take a sip of water, pop the pill and then recite in my head - "This is a red Skittle, this is a red Skittle...."  imagining that it's something I like and that it's sweet and tiny makes it easier to swallow I think.

Do you ever get a pill in your mouth and start to taste it and begin to gag but you know you just HAVE to swallow it.  I panic; my brain goes crazy trying to convince my mouth, stomach, and gag reflex that everything will be fine if I just SWALLOW the darn thing quickly.  But I get paralyzed all the more making the taste and feel of a large pill bumping against the back of my throat worse.  I try the "Skittle" trick to no avail.  This morning I frantically searched the heavens (as my head is usually tilted up and back so that the pill is in prime position to slide down my gullet) trying to find SOMETHING to psych myself into thinking.  My eye landed on a Wii remote sleeve -- these are opaque white things that cover the Wii remote.  And immediately I thought, "Okay - this pill in my mouth is a tasty, white sugar cube".  I had to repeat it a few times before I had the courage to swallow the pill but I safely got it down.

*Whew*

Am I the only one who has trouble swallowing pills?

Tuesday, October 26, 2010

Beat

Whew.  One week down of Cycle #2.  Another week started yesterday and I also got my blood count tested again.  A lot has happened since my last post......to my body, that is.  I've been so ill I haven't been up for writing but I felt bad not updating so here I am.

My white blood count THIS time is low.  But not as low as last time so we are thankful we can continue the antibiotics this week.  However, some other stuff on my blood work came back elevated.  This particular measurement indicated that I am not processing the toxins or inflammation in my body very well.  So now I am put on yet ANOTHER med.  And it so happens to be an expensive one that my insurance company may or may not pay for.  So please pray it will be covered! I will find out this afternoon. I THINK our insurance is pretty good.  And at least for my littlest one, when an expensive drug came up, we did have to pay a bit more than the usual $3 or $9 for the drug but it was about 75% less than the original cost so that's what I'm hoping with this new drug.

My husband is home from his 3 week work assignment and my Mom is still in town to help during the day!  What a blessing.  I am getting to the point where noise is quite bothersome.  I don't know how to quite describe it.  My whole body hurts and my general feeling of yucky-ness skyrockets when there are noises around.  I can watch tv which distracts me, but enter my 3-year-old and her new found love of chatting and I almost go insane. I love to hear her thoughts but it's just non-stop.  Thankfully Grandma runs interference.  But when she leaves in a few days I'll need to come up with some creative ideas.....like "quiet book time" on the bed in the other room....or "play time" in the other room.

Church is like a huge sensory overload. It hasn't ceased to be the most intense problem for my body.  My husband took me out and wheeled me around in my wheelchair on Saturday to get some errands done.  I WAS wiped out afterwards but I easily recovered with some rest at home.  And it was nice to get out.  Then Sunday came and it must be the combination of getting ready quickly in the morning, then walking into a sanctuary full of singing people with a loud orchestra, and just having to "socialize".  I tremble the WHOLE time.  And this last Sunday I nearly fainted a few times and I was only sitting!!! Who faints when they are sitting?

We want to continue to go to church but we're trying to figure out a different game plan to make it easier on me.  We've got a few ideas and I suppose we'll figure them out.

Anyone else out there who is chronically ill -- what "sets you off" the most?

Wednesday, October 13, 2010

Thankful

My white blood count is back to normal.  Thanks for praying. I resume treatment again on Monday.  Oh joy :(  Dreading how it will make me feel but thankful my mom will be up here then to help out while Matt is still away. 

What a family I have to take turns flying out of state just to help our family.  Thankful that God had me born into such a great fam. :)

Tuesday, October 12, 2010

Hopeful




Sorry about the pic.  It's the latest.  Smithers, I would like to hope, sensed that I was sick and decided to cuddle and purr for about 30 minutes.  But really, I know the truth - she had been gone for a whole week while my brother was here (he's allergic to cats) and when she got back she decided SHE needed some attention.  They say animals help you heal faster.  Or is that dogs?  Oh well, she's close enough to a dog.

I don't remember what I've written so sorry to repeat myself.

I had to go off of the antibiotics about 2 days earlier than planned because of a low white blood count.  Yesterday I was tested again (still waiting on results).  But it just so happened that this week was my "off" week anyway (off of antibiotics).  So I wondered how I would feel.  The "normal" (if there is a normal in Lyme disease) is that at some point off the antibiotics you feel "better" for a bit.  And the hope is that after each cycle of antibiotics, you feel better for longer each time.

Well, 3 days after I stopped antibiotics I wondered if I'd ever feel "better" again.  But then hope came yesterday.  Hard to describe because I still feel pretty bad.  But I feel better.  Let's put it this way:

Before (on antibiotics):
-throbbing joints
-headache/migraine daily
-sore-to-the-touch muscles (felt like I'd been in a car accident)
-constant nausea
-balance issues
-severe fatigue

After (5 days after antibiotics):
-bad fatigue (but not severe -- still can't do much other than lay on the couch)
-some headaches

So basically, I still can't do much, but I feel a LOT better while not doing much.  It may not last long but I'm enjoying it while I have it.

I am SO beyond thankful that I have help....24 hr. help.  I wish we had money to hire someone to do this once all my family has left.  My brother and sister-in-law and niece were so very helpful, anticipating needs and just taking over. I really didn't have to leave the couch at all and honestly, I couldn't probably if I tried.

My sister is here now and she is also being very very helpful.  Georgie is SO happy to have her here. And we're hoping to tackle some "purging" projects and organization stuff this week since I'm feeling well enough to help her sort through things.  She also doesn't mind holding Olivia who has just started to insist on things being done HER way and immediately.  We probably wouldn't give in so much if her yells didn't exacerbate my headaches.

So anyway - please continue to pray for our family and hopefully this "feeling better" will last a few more days :)

Saturday, October 9, 2010

Overdone

I've had 24 hr help for one week. I haven't really had to do anything except rest, occasionally take a shower, and occasionally put my girls to bed (they need a momma's love for that).  You'd think it would help get me to feeling a lot better.  But actually it makes me realize how much WORSE I'd feel if I didn't have this help!  I am so thankful for willing family members who flew out of state to come help me.

And today was the first day my only real complaint was JUST fatigue.  And it wasn't crushing.  So I ran a quick errand by myself.  This is actually a relaxing thing for me to do.  Especially if the store is very small, I only need to buy a few things, and I know the store owner.  Got home and felt a little more fatigued but nothing major.  I rested off my feet as I have been doing all week.  And then...

Then, my brother suggested we play Mario Brothers.  And then after that a friendly competition of Family Feud.

Who knew that playing video games could cause a near-meltdown?  I was shaking like crazy.  It's so funny to me the things that seem to really drain me - watching a tense movie, playing video games, sitting in church, laughing.....

I'm learning new stuff every day.

Friday, October 8, 2010

Halted

 1 1/2 weeks into treatment and it's come to a screeching halt.  I was feeling terrible which probably meant the antibiotics were doing their job, but some "safety" blood work came back abnormal.  Apparently my white blood cells have decided that the antibiotics can take over their job which is NOT good.  A low white blood count really isn't ever good I suppose.  So I'm taking a break and will get re-tested next week and possibly again if it is still looking low.  We'll wait til my white blood cell count goes back up to resume treatment.

A setback, but I'm glad the doctors take this stuff seriously and look out for the health and safety of their patients.

I've been off of antibiotics for 2 days now and I can't say I feel any different.  Maybe less nauseous because the meds make me really nauseous, but I still have that overwhelming fatigue where even talking is just too hard sometimes.  And LOTS of joint pain.

I really just can't wait to be rid of Lyme from my life.

So now the prayer request is to get my white blood count up very soon!

P.S - having 24 hr help is awesome!

Saturday, October 2, 2010

Nauseated

At the sight of these.  These are my meds.  Today and tomorrow I am "off" of the antibiotics (not the other supplements and meds, though!) and boy am I happy.  They just generally don't make me feel good and then when the die-off reaction occurs a day or two later, I just feel even more awful. *sigh*

Morning:

 Lunch:


Dinner (on left) and Bedtime (on right):

Friday, October 1, 2010

Weepy

Here we are on day 5 of treatment and for sure this is the worst day so far.  Ick.  I feel TERRIBLE.  I go in waves of barely functioning to what must be waves of adrenaline when I have to care for the kiddos.  Definitely the hardest thing I've done in life is being ill WHILE being a mom.

You want to train your kids as they grow and teach them to be kind and obedient but that really is a FULL-time job.  And I'm not well enough to do it so it just discourages me so much as the days go on.  I have to pray a lot that God will guard their little hearts until my husband and I can be more consistent in raising them.

I think I've cried more today than I have in a while.  Just so discouraging to be a mom and be ill.

But there's hope!  On Monday I'll have live-in help for a whole month!  And it will be various members of my sweet family taking turns to serve us that way.  It will be great to see them and much laughter will be had (which I'm sure helps in the healing process) :) and I will get more rest than I've gotten it a while because they are all servants and don't need to ask what needs to be done.  They just do.

It will bless our family greatly!

Monday, September 27, 2010

Wiped

Oh yes.  This could be from our weekend and me doing more than I should have.

But I did start antibiotic treatment today.  Not feeling much yet except for crushing fatigue.  I mean, SO bad - it feels like a lead hand is weighting down your chest.  And I got a bad headache toward the end of the day.

Day 1 - over.  Let's see how the rest of the week goes.

Thursday, September 23, 2010

Ugh

Life does NOT stop even though you're chronically ill.  In the last week I've taken my daughter to the doctor twice, taken her across town to get an x-ray, been to the pharmacy 3 times, and have comforted this said little one for OVER a week.  And that's NOT normal doctor's appointments.  Next week the other one has a regular check up. *Sigh*

After today's ordeal I had my daughter walk up the stairs to our front door, knock on it, and when my husband answered she said, "Mommy needs help!"  He helped me up the stairs.  Too much exertion and stimulation and I felt like my symptoms were all back.  Thankfully with some rest I feel a bit more back to normal.

But really, you wish life would stop until you could feel better.  But no.  It doesn't.  Especially with little ones.

P.S - My daughter is thankfully not in a bad way and shall soon be feeling better

Terrified

I talked to the P.A today. I could have called earlier with a few questions I had but I just didn't. I know why I didn't. I was afraid that when she heard of the improvements I was having, she and Dr. J would conclude it would be a great time to start treatment. It's not that I don't want to get better, but man, oh man. Have you ever heard the stories or read other people's accounts of killing the Lyme spirochetes? It's not an easy thing on your body and I just already feel rotten, so why would I WANT to feel MORE rotten? I guess it's a "big picture" kind of thing. You have to feel bad before you'll feel better.


So she called and yes, she thinks I'm stabilized enough to start antibiotics on Monday. Basically my main complaints right now are SEVERE lack of energy and my arm tremors IF I exert myself too much. My pain is a lot better and I'm not dizzy or nauseous and only have balance problems when I over exert myself. And no seizures for.....well, for a while now. So I can keep my symptoms to a minimum if I basically lay on the couch all day. But I can't do that because I've got two littles that need me. I do the BARE minimum and boy does that make me feel like a lousy mom. I know I shouldn't feel that way but especially now that my oldest is getting to the point where she NEEDS that one-on-one contact a lot and asks so many inquisitive questions....well, *sigh* I just get tired thinking about it.


Did you know I have a great support system of friends at church? For the last few weeks I've had a steady help from one friend who comes and selflessly plays with my little girl. I don't know but I always was never one to ENJOY playing with kids before I had kids. Of course it changed when I had my own. But other people's kids? Not always fun. So I do really count it a huge blessing and act of servanthood for this friend to come spend half her days interacting so closely with little Goose.


Did you know I have other friends who help too? In the last two weeks I've had 3 OTHER friends drive 30 minutes to get to my house just to clean my kitchen, or vacuum my floors, or mop my kitchen or FOLD MY LAUNDRY....I don't know about you but I just figured folding other people's clean laundry was sort of just something you don't ask someone else to do. I mean, there's underwear in there. It's clean, yes, but it's still someone else's. So I never did ask anyone when they'd ask what they could do to help. But one of my friends just got in there and offered to do it. She didn't mind at all! And BOY what a help it was! I had a few loads just waiting to be folded and put away. You know what else she did? She went through little Livie's drawer of clothes and got out all the ones she had outgrown and put in the ones she now fits into. A huge task (in my weakened state) that now is completed. She also brought dinner and HAS brought a meal a week to us for the last few weeks. And promises to bring more :)


I had a friend make a Costco run for us since it had eluded us for the last few weeks. That's where we buy the little Cub's formula. It's cheaper there. And when she dropped off our stuff she came in and cleaned a little too.


I had a friend this week come that 30 minute drive to my house and let her boys play with my daughter. And while they played she assembled that night's dinner for us. What a blessing friends can be in time of need! This is the body of Christ doing what they are supposed to! And we don't take it for granted. We are SO thankful.


So back to the phone call from the doctor - I'm still not sleeping as well as she'd like so I'm going to start another med. to help me sleep better. Because good sleep is pretty crucial to your body recovering. It's all about getting your immune system back in control.


I got my MRI results. They showed my brain was fine! So thankful for this. My spine however showed a few spots of degenerative arthritis! Obviously this isn't normal for a 27 year old so the doctor thinks it's due to the Lyme disease. Lyme can cause early aging. Unfortunately there's nothing they can do to fix it but hopefully when we kill the Lyme it will at least slow down this "aging" process. That's the most she could promise is that we could "slow it down".


I'll be put on a few antibiotics at the same time for two weeks at a time. And then a fourth antibiotic on the last two days of each week (it helps "bust through" the cysts that form when the Lyme tries to "protect" itself from the antibiotics). Then I'll have one week off of all antibiotics. I'll do 3 cycles of this and then do a phone consult with Dr. J himself instead of just his P.A. We're grateful they aren't requiring me to fly there for the appointment. I'm to keep close track of my symptoms throughout treatment and it will help them know whether it's working. And throughout these whole cycles I'll be keeping in close contact with the P.A.


It's hard to know exactly what to expect because it's different for each person. It will probably exacerbate my old symptoms (pain, etc) but that means it's doing it's job. If it's unbearable pain we can adjust the doses, etc.


So please just pray for us. I'm SO SO scared to start this treatment because I know how awful it can make you feel. I start Monday morning!


I'm terrified but trusting that God will be with me (and our whole family unit) through this. He's sovereign over EVERY little thing in this universe so why should I doubt He'll help us through this?

Monday, September 13, 2010

Suffering


“We're not necessarily doubting that God will do the best for us; we are wondering how painful the best will turn out to be” - C.S Lewis on learning of his wife's cancer

I think that's how Matt and I kind of felt as we went down the road to getting the diagnosis of Lyme disease. Weeks...months before we decide to head to DC to see the Lyme doctor I remember just being TERRIFIED at even the prospect of having Lyme disease. I knew what it could do to your body and I just thought, "No...NO.....I have two kids to care for and I simply can't get that sick." I didn't want to entrust it to God because I knew that if I DID, He might choose to lead us down a road of fiery trials and I REALLY didn't want to experience them. It was my sin of not believing that what He gives us and where He leads us IS truly what is best for us. We might not see why at the time but He cares for us. He wouldn't lead us down a road that was full of thorns if He didn't plan on caring for us the whole time and not letting us suffer more than we can handle with His help.

"He who gave His only begotten Son for you, will never withhold anything from you which is really for your good. Lean back on this thought and be content. Say to yourself in the darkest hour of trial, ‘This also is ordered by Him who gave Christ to die for my sins. It cannot be wrong. It is done in love. It must be well.’" J.C. Ryle

We do try to "lean back" on this thought. It's hard at times I have to admit. I don't know that anyone experiencing physical sufferings and the repercussions it has on the surrounding family would ever tell you it was EASY to "lean back" on that thought. It takes daily, no hourly reminders.

Your 5 month old is screaming -- supposed to be sleeping -- supposed to be YOUR time of rest. Your 3 year old is arguing with you about what she wants to do right now. You are her mom and know what is best for her right now. You know it's critical that you get rest at this VERY moment or else your tremor might turn into a seizure or a fainting episode. And yet she argues more, not doing what you command. The baby meanwhile screams louder and louder. Your body aches, your joints HURT, your body feels like lead, your arm is tremoring like crazy. You have no physical help today. For your good....done in love.

God is our refuge and strength, a very present help in trouble. Therefore we will not fear though the earth gives way, though the mountains be moved into the heart of the sea, though its waters roar and foam, though the mountains tremble at its swelling. Psalm 46:1–3

That IS what it feels like, by the way. Not being dramatic or anything but it truly does feel like the earth is giving way, the mountains are being uprooted, the seas are swelling all around you hardly giving you time to get a breath without choking. I got an email of encouragement that in part said, "Crawl, don't walk today...you might fall and break a bone." I wrote back with tears streaming down my face - "How am I supposed to crawl while carrying a baby!?" But it's true...I have fallen...many times. Bruises to account for each one. But guess what? I've never fallen while carrying my baby! God has protected her.

"Everyone feels benevolent if nothing happens to be annoying him at the moment." - C.S Lewis Problem of Pain

Life is NOT how we dreamed it should be at this stage in our life. Married to each other - each other's best friend, 2 beautiful girls. I think we envisioned our lives being more adventurous. I mean, this truly has been some kind of adventure but we thought we'd be adventuring in other ways - across the world together, hiking, traveling, being more involved in our church, being more involved in tuning the hearts of our little girls. I know for a fact that when we vowed our vows on our wedding day, that neither one of us expected THIS.

Beloved, do not be surprised at the fiery trial when it comes upon you to test you, as though something strange were happening to you. But rejoice insofar as you share Christ's sufferings, that you may also rejoice and be glad when his glory is revealed. I Peter 4:12-13

But really we should have been ready for it, not surprised. If we were truly letting God lead our lives we wouldn't have been so taken aback. Even with the good things He's given us. I've always been so surprised by them. How wonderful the good things that God gives us are. We have SO many blessings and each time I was surprised at how good they were, when really? I should have known it would be so wonderful based on WHO He is. Maybe if I had spent more time studying WHO God really is I wouldn't have to remind myself that the good things are more wonderful than we can imagine and the bad things are not out of His control.

“God, who foresaw your tribulation, has specially armed you to go through it, not without pain but without stain” - C.S Lewis The Problem of Pain


We don't doubt God's sovereignty over this trial in our lives. Even as bad as it is and as worse as it's getting. We're no longer at the point of feeling shocked at each new physical scary symptom. We're leaning on our Guide knowing that He may keep giving us scary things to deal with and giving us things we don't want to experience. But we know it's not out of His control. He is leading us all the way. For your good....done in love.

The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged. Deuteronomy 31:8

And then in the middle of this our oldest one was afflicted with a painful uti. The type of thing that hit when all doctors offices were closed. We took her to the ER. I should restate that...I took her to the ER. Matt and I debated about it. He didn't think I was strong enough to do it alone but we didn't want to drag our littlest one into the germ-fest arena. I told him my adrenaline had kicked in and I would make it. I might crash the next day but I could do it. It was a long night and yes, she did have a urinary tract infection. Poor little thing. Put on antibiotics. Follow-up appointment. All looked well but they just wanted to test her again in case.

I got the call today that I'm sorry, but your daughter STILL has the uti. More antibiotics for her. All that races through my head is Matt is gone all day/evening today; I'm not well enough to drive WITH kids to get antibiotics; WHY? and then I breathe.....For your good....done in love. A friend texts me: Did you get anyone to come help you today? I'm coming right over.

And the Lord will guide you continually and satisfy your desire in scorched places and make your bones strong; and you shall be like a watered garden, like a spring of water, whose waters do not fail. Isaiah 58:11

-PAIN...lots of it. Getting better, though with meds. But not gone.
-LOST SENSE OF BALANCE...comes and goes thankfully so I'm not hobbling around the house too much. But I've fallen a lot and when/IF we go out I put all my weight on Matt to get to and fro.
-FATIGUE...so SO much that sometimes I feel like lead. I stood up yesterday and fell to the ground on my knees bent over the couch. Matt came over and literally lifted my lead body back on the couch. Sleeping doesn't help. It's not tiredness...it's physical energy give-out.
-TREMORS....which my doctor does say is a form of a seizure. Usually happens when I'm stressed physically or emotionally. To stop it I can either try to relax or if it is starting to get out of control I can take some medicine. One of these days I'll video it for you so you know what I mean.
All caused by this Lyme disease! Yuck! I want to be rid of it. I hate that it has ahold of my body and brain. Yuck!

We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed; always carrying in the body the death of Jesus, so that the life of Jesus may also be manifested in our bodies. For we who live are always being given over to death for Jesus' sake, so that the life of Jesus also may be manifested in our mortal flesh. 2 Corinthians 4:8-11


So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.
2 Cor 4:16-18

We may be suffering over here but we haven't forgotten who we serve. And He cares for us. This is our God:



Sunday, September 12, 2010

Ickity-Poo

Well, still no seizures so that's a great sign. But I still feel yucky. BUT, I am having more and more GOOD "moments" throughout the day. Moments that I'm NOT dizzy, that I DON'T have balance problems -- that I feel fairly "normal". Problem is, these moments are usually short-lived. But I take it as progress. Someday MOST of the day will be good? Right?

What do you do when you're chronically ill and one of your kids gets sick? They NEED their mom. They need the hugs and cuddles and extra energy and attention it requires. Especially when they are a little baby. They don't understand "Mommy's sick" or "I don't have the energy to walk in there and help you". So you just have to FORCE your body to do it.

Thankfully the littlest one got sick on Friday and so I only had one day to deal with her alone. Often I was mustering every ounce of energy (that I don't have) to get up when she woke up early from her naps and needed cuddles. I just have to say, squirmy cuddles are not like still cuddles. Squirmy cuddles require about 10 times more energy than still cuddles. *sigh* Just thinking about it wears me out.

I'm thankful for my husband who basically did ALL the caring for the littlest one this weekend and we're looking like the sicky is on the mend. So hopefully when he goes back to work tomorrow it won't be as difficult to care for a sick one when I'm ill myself.
I'm so thankful for healthy (in the sense they do not have a chronic illness) children. So I suppose I shouldn't complain when they get normal sniffles.

I really just want to be "well enough" to start killing the Lyme. I hope that can be soon! I want to be well and a normal mommy. You know you're not well when your 3-year-old often asks, "You're not feeling good, Mom?" or comes up to you as you lay on the couch and strokes your head and says, "It's okay, my wuv. It's okay."

Wednesday, September 8, 2010

Wiped

Well, no seizures for over a week now. But when I get particularly overwhelmed sensory wise I get a huge tremor in my right arm. So for instance, the whole getting up for church and getting ready (even though I have help from my husband) sort of takes its toll and by the time we drop the girls off at their Sunday school and nursery and sit down in the worship center, I'm trembling like crazy. Also when we were watching a particularly tense movie I got a big tremor. When the little Bear Cub cries loud and hard on longer car rides....you can see what I mean.

I usually need assistance walking. Although some days are better than others. I have a few well-placed bruises from falls I've taken around the house. When we're out Matt usually helps me get around. At the house I can hold on to things. My husband jokes I should use his hiking poles to help get me around :)

Car rides are THE worst. I get so dizzy and nauseous that by the time we reach our destination I am usually feeling like I'm going to pass out. Hubby has to take the girls in then come back out and help me in and all the way I nearly collapse a few times. Usually getting me to the couch for a good 20 minute rest will help alleviate those symptoms. But if I get to that point then you can bet my arm will be tremoring like crazy. I've found a few tricks that help car rides a bit. And I will say not ALL car rides are the same. Usually if I've already done some stuff that day, that last car ride of the day (to get home) is usually the worst. So in other words, the more taxed my body is, the worst the car ride.

I'm really fatigued. Around the house if I'm alone with the girls I basically do JUST what needs to be done. Change diapers, feed bottles, make lunch, help the Goose with the potty, put the girls down for naps, etc. The house is A MESS. My husband comes home and makes dinner and thankfully can usually get at least the dishwasher loaded and washed and usually can wash the rest of the kitchen.

Last week we were so blessed by friends who brought meals and came over to help with the girls. This week a friend is taking the Goose for 5 days so that I can see if I can rest a little more. Maybe dealing with just one little one will help calm my system down a bit more?

My doctor is hopeful that a few more weeks of the meds I'm on and with rest, my nervous system could be calmed down enough that I can be ready for the first round of antibiotics! I hope so. I'd love to start killing the Lyme "bugs" soon!

Tuesday, August 31, 2010

Lyme'd pt 2

Well, for a while now we've been reconsidering the possibility that I may have Lyme disease. I was in fact bitten by a tick when I was 6 years old, got the classic bulls-eye rash that usually indicates you have Lyme, but my mom watched me to see if I got sick and I didn't. So she thought I was in the clear. Not very much was known about the Lyme disease spirochete so there's really not much she could have done back then based on my lack of symptoms.


A year or so later I was diagnosed with childhood migraines and for as long as I can remember I remember having a headache. Sometimes waking with one and going to sleep with one for months on end. Migraines would be 5 times a week when it was really bad and once a month when it wasn't so bad.

I also complained of joint pain as a young child but not to the degree that you'd go seek medical help.

So with what we had learned about Lyme disease in the last year or so (my sister-in-law and brother-in-law both have it), we began to feel a bit terrified that I may fit the bill for a Lyme patient. For a while we just brushed it under the rug trying to resist admitting it could be a real possibility for me. Lyme is not a pretty disease and especially untreated can lead to some neurological stuff that is just not cool.

After Liv was born in March, the fatigue started setting in. Then the joint pain came back again full force, and after a few months I noticed some twitches on one side of my body. Ugh. We prayed about it and discussed it a lot and decided we would need to get a definitive answer as to whether I had Lyme or not because catching it as early as you can helps in the treatment process.

There are only a handful of doctors who are really well-versed in Lyme disease (because it can look like so many other diseases) and truly know how to treat it effectively, especially in patients who have had it for years and not known it. There are some reasons why your regular doctor might not know how to treat or look for symptoms but it is a LONG story so if you want you can email me and I can point you toward some helpful resources to explain it all.

Through research and prayer we were led to Dr. J's clinic in Washington DC (if you ask me I can refer you to his website and there's a lot of Lyme info on there!). We felt that he and his P.A would be able to tell us whether or not I absolutely had Lyme disease. Going into the appointment we were both just trying to keep an open mind and be in charge of our health. We were armed with questions and were eager to learn about the science of the disease.

It was awesome. It was a 3 hour appointment. They sure took their time with us and were very thorough. It's serious business being diagnosed. They want to be sure.

We are going to be primarily treated by Dr. J's P.A. She's awesome! And confers with Dr. J so we get the benefit of two minds against my disease!

The examination was thorough and my entire medical history including blood work-ups and tests and biopsies, etc were looked through. A complete physical examination was done as well. I'm telling you, they were THOROUGH.

I don't know if it was a relief or a terrifying moment when they diagnosed me with Lyme. I wanted to tear up at how afraid I was of it and yet also sigh a sigh of relief that NOW we know and NOW we can treat and there's HOPE to feel better.

She said Lyme likes to hide in the central nervous system (behind/under your right ear) so basically all the joint pain I have is just the nervous system's response and not REAL joint pain. That's why it floats around to different joints. And also my headaches and general pain are nerve responses. Also my bowel issues that have never tested positive for anything wrong (no Celiac, normal colonoscopy, EGD, etc) can be attributed to a nerve response. So is my on and off nausea. It also would affect my reflexes and be responsible for some twitching that I've started having since Olivia was born. Also that upper abdominal pain can be explained by that too! So that's why all the pain meds I've tried have done NOTHING for the joint/abdominal pain because it's a nerve problem, not a problem that has to do with inflammation (what most OTC meds are for). Yucky, mean, Lyme Disease!

So she said what we'll do first is try to treat my symptoms and get my nerve system under control again so that my immune system can gather itself up again and better be able to fight the bacteria when they put me on antibiotics. So I'm going on a combination of 3 nerve-related drugs and supposedly this should take away my pain and headaches and help me get a better night sleep. Also a few vitamin/supplements to help prepare the body. Nothing weird.....I've heard of everything and it's sold in regular vitamin shops. Hopefully my immune system will get a boost and balance out a bit.

So after I get the symptoms under control, then they'll start antibiotics. It will probably be a 1-3 years regimen.

It will be HARD. The die-off reaction from the Lyme dying as the antibiotics work will probably knock me off my feet but they said their goal is not to do that to me but to do the minimal amount they can that still works. So I guess we'll just see how it goes. We're gearing up for it to be VERY hard and I think more so because we'll be moving somewhere in a month without a support system. *sigh*

Stress and anxiety can lower your immune system response so they said that for me it explains why I seemed to get way worse during times of stress -- after the gallbladder attacks after Georgie was born 3 years ago, then when Matt went to Iraq, and now after giving birth again to Livie.

They also said it's not uncommon for all symptoms to disappear during pregnancy like mine did. Something to do with the way hormones work with Lyme flare-ups.


SO..........
Not yet even 2 weeks after being diagnosed, the Lord has thrown us a curve ball. Yes I was diagnosed with Lyme disease and there can be some pretty scary neuro symptoms to go along with it. We thought I was not anywhere close to experiencing those things yet. In fact, we were enjoying our vacation time out of state with family and actually thought I had a breakthrough! I woke up one morning WITHOUT PAIN and feeling somewhat 'normal'. This has not happened in a while. I was cautious but Matt told me not to be and just be so happy and thankful that the nerve meds must be doing their job. Further confirmation it IS Lyme we're dealing with here. Made me excited to hopefully start the antibiotic treatment soon so that we could kill the Lyme and I could go back to having a normal life.

And then out of nowhere - SMACK - we get a terrifying surprise. I'll spare you all the details, but as we stopped for lunch on our last day with our family before beginning the long multi-state drive back home, I collapsed in the IN-N-Out parking lot and had a seizure. I'm thankful someone was there to catch me. My brother had been helping me walk across the parking lot because I felt light-headed. So they (Matt saw me fall and came to help my bro) carried me back to the car as I convulsed (closer than the restaurant at that point) and Matt worked on calming down my breathing as I lay there shaking and twitching. Scary, no?

Now, we were thankful we had the diagnosis of Lyme and had seen our dear sweet sister-in-law and brother go through this. Because otherwise, we would have been baffled and probably looking for the nearest emergency room only to be told that they could find nothing wrong :) Instead, we knew this was definitely a symptom of Lyme and that while we were quite scared, we knew we could contact our doctor for further instructions.

We did and she was very helpful. Thankfully in my possession was anti-seizure meds (used for something else) that we were able to use whenever a seizure arose.

All that to say, for the last 5 or so days I've had at least one seizure a day. And also another lovely symptom has arisen - I walk like a drunken man. If I work REALLY hard I can walk somewhat normal but around the house I'm finding myself with jello legs, knocking haphazardly into walls and tables and occasionally falling over all together. Not to mention the random neck/head and arm twitches that happen most of the day.

This is TERRIFYING for us as you can imagine. Especially with me being the caregiver for our two little ones. We're having to think about what we're going to do about that. So far this week since Matt went back to work I've had help from friends and Matt has come back and forth from work.

We know our God knows every detail about this new trial in our lives and that it's no surprise to Him. He will provide for us and already has in ways we couldn't think of ourselves. Some things we're thankful for:

-a diagnosis before all this happened so that we weren't caught too completely off guard and didn't have to feel like there was another mystery to add to the already "mysterious illness" I had.

-anti-seizure medicine in my possession! Although I was on a dose used for something else, it is the same stuff they would give you in the hospital in a bigger dose if you have a seizure. This made our drive home a lot easier when I could "catch" the seizure before it got bad.

-humble, selfless friends from church who are willing to help us out right now.

-easy babies who have made life easy for me when I do have to be alone with them. Georgie's already learned that "if mommy falls, bring her THIS medicine". We'll see if she ever has to put it into practice! I hope not.

Around the house I've gotten good at holding on to things as I go along so I really haven't fallen much here. My sense of balance is getting better the more rest I get. I think just recovering from a month of constant travel and going will help with my symptoms.

We're hoping and praying this is a passing fancy. That in a few days I'll be back to the "normal" I was used to. Fatigue and pain are a lot less scary than convulsions, twitchy head/arm and a lost sense of balance. But we will accept whatever the Lord chooses to do with this situation.

Please pray for us and I'll try to keep you updated but don't be surprised if you don't hear from me for a while. Honestly this is the first time I've felt up to typing on the computer lately.

Sunday, August 29, 2010

Lyme'd

Finally a diagnosis that has a plan that will eventually get me back to feeling well.

Lyme Disease.

More later.

Tuesday, July 20, 2010

Amused

I have not had a great run with the general medical community. I've been passed around to different doctors because all of my tests come back normal. You'd think I'd get some treatment for symptoms at least, though, right?

A few years ago I got bounced around the Army medical system and finally when it seemed like all the tests were exhausted they "sent me away" and said, "This should resolve itself in a few weeks since everything looks normal." Really? It didn't resolve itself and in fact got worse.

Change of locations and a new round of doctors. I figured there's bound to be some doctor eventually who figures out what's wrong. A few answers here and there but nothing to take care of my WHOLE symptoms. For some reason, no matter how I explained my two debilitating symptoms - fatigue and joint pain, I couldn't get much of a treatment plan. Explaining it like, "feel like I've been hit by a truck", "spend the whole day with throbbing joints", "hurts to walk", "hurts to hold the steering wheel", "hurts to hold my daughter". Sometimes they'd ask me if I was depressed. I always hated that question because I KNEW I wasn't depressed but it sure was getting pretty demoralizing to not have answers and feel awful. So how do you convey that without them assuming you ARE depressed? And I also hated it because they seemed to just assume that my symptoms were due to depression. Or that it was all in my head. Ugh.

Finally, at my lowest point, I had yet another appointment with the same general practitioner I had been using for a few months. Something clicked in that appointment with him. Maybe it was the fact that I was so fatigued that I was laying down on the exam table when he walked in and struggled to sit up by myself. Or maybe it was the fact that my mom (who came with me that time) told him that I usually am a lively person. But I remember him looking at me like he had truly SEEN me. He said, "I can see it now. You DO look unwell." He listened again to my symptoms and REALLY listened. He prescribed an arthritis drug and gave me samples of another one that was stronger in case the original one didn't work. He admitted he was at the end of his rope as to how to proceed next but took his best guess that it might possibly be related to something going on in my gut because of some differences in vitamin levels on blood work. So he referred me to someone else.

And before he left the room he said, "I am SO sorry I didn't take you more seriously before."

Why can't all doctors be like that?

So referred I was and I went the semi-natural way and it seemed indeed that the problem may be in my gut. Natural treatment seemed to help. And then pregnancy came and took all my symptoms away!

Little Snuglett was born and 3 months later - BAM! My symptoms start returning. They aren't nearly to the point they were when I was at my worst but I'd love to catch them before they get awful.

We are yet in a NEW location. So time to get new doctors. This time around I've got some new symptoms. Symptoms for every kind of doctor. So we'll take care of them one at a time. I have almost run my course with the GI doctor. One more test this week and then his diagnosis will be complete....but so far every test has been normal.

For my returning joint pain I went to my general practitioner. I explained my history to her. She will re-test for the same things I was tested for a few years ago. At the end of the appointment I said, "What can I take for pain? I was put on Celebrex (an arthritis med) a few years ago for this pain."

You know what she said?

"You should stick to over-the-counter meds."

I said, "I've tried tylenol, ibuprofen, Aleve....nothing helps"

She said, "You can take 2..."

I interrupted, "I take THREE...."

She interrupted, "You'd be surprised how well they work.....And anyway, if these tests come back normal then this will all pass for you in a few weeks."

Didn't she hear my history? *sigh*

Well, we are moving yet again in a few months so a new round of doctors will be tried I suppose. And we're still exploring some new routes to go down regarding my health so I guess we'll see how God chooses to deal with my situation.

Tuesday, June 22, 2010

Thankful

Despite not feeling great lately, I haven't lost the ability to enjoy BOTH of my little girls. The arrival of the littlest cub to our family has brought so much joy to everyone here. It's fun to watch the Goose enjoy her sister so much and also to hear what silly things she comes up with every minute of the day.

It makes the non-enjoyable physical state I'm in easier to deal with. God sure knows how to give blessings in the midst of trials :)

I'm starting in on the candida regimen I had to stop when I first got pregnant. If experience is anything, it's going to be a rough go. It sure makes you feel yucky. But hopefully it will do some good.

We're also going to pursue some more medical advice over the next few months so we'll see where that leads us. I've had just about every medical test done over the last few years and all were normal. So we're kinda just expecting the next step to be a doctor telling us it's all in my head. Let's hope not. I'm grateful for a supportive husband, friends, and family. Makes it a little easier to bear.