Friday, September 30, 2011

slow-going

The consensus was that y'all wanted to see the scar.  But I saw a few "no's" so here's what I did for you.  You can click this link or you can click on the link above that says "If you want to see my scar....".  I'll have it up for a few days but then I'll take it down.  So now the squeamish don't have to avoid my blog :0)  And I'm proud to say, that after 48 hours, I was finally allowed to shower!!!  I mean, I have definitely gone 48 hours without showering, but when you have orders NOT to, it makes you really antsy TO take that shower.


I don't know how much I explained about my ordeal in the recovery room.  Basically I knew that with any surgery there would be IV antibiotics.  So I wondered how my body would react to them.  When I was "coming out" of the deep sleep they had put me in, my body started to twitch and then shake and then convulse like I do when I'm having a "partial seizure".  I haven't had one for at least three or four months so I'm pretty positive it had to do with the IV antibiotics.  Anyway, the nurse was going between me and another patient and she said "Are you cold?" and I couldn't answer. I just kept flailing away.  She wrapped me up and put an air hose blowing hot air under all the blankets and then when I kept shaking she pushed Demerol in my IV line.  That made me stop convulsing immediately.

I started coughing too.  The lady recovering next to me was coughing as well.  I heard the nurse say to her, "Cough it out, cough it out......it's because you had a breathing tube."  I had a breathing tube too so I assumed it was that for me as well.  But my coughing spasms just got worse and worse.

They brought me water and it didn't help.  I still wasn't speaking.  I think I was still in a daze.  Finally they just wheeled me to the second recovery room where Matt could be with me.  I was STILL coughing and then once I reached the room, my chest started rattling.  Loud!  I never felt like I couldn't breath, but it was ridiculous to breath and sound like a rattlesnake.  Plus no amount of coughing could get any of the rattly stuff up.  Machines started beeping, doctors and nurses came in in a hurry and listened to my chest.  They tried to act calm.  They asked doctors as they passed by what they thought.

I was given an albuterol treatment and it didn't help.  So they gave me something else through the nebulizer and that seemed to help a lot.  The rattling subsided but now my lungs felt tight and on fire.  They tried to find the anesthesiologist.  While we waited my heart rate skyrocketed because of the steroid treatments.  Matt said according to the monitor I should have been running a marathon :)  The doctors said they didn't even HAVE to listen to my chest when it was rattling because they could just FEEL it when they put a hand on my back.

Finally the anesthesiologist came and asked some questions and listened to my chest and then said that sometimes, rarely, patients can have this kind of reaction to one of the gases they use to put you under.  He said he didn't use THAT gas.  But he supposed it could happen with another.  So basically it was an irritation that triggered an asthma-like attack.  I get bronchitis every time I get a cold.  Inhaler and everything.  They said I may have a touch of asthma if it happens that often and especially with the way I reacted to the gas.  But they told me next time I have surgery tell them that I had Postoperative Bronchial Spasms so they can avoid using the stuff that can cause that.

Anyhow - I was finally able to go home and the doctor releasing me said that the rattling would most likely come back and that if I had an inhaler at home, to just use that.  So this would be sort of a wait and see kind of thing.  I didn't know it would be THIS bad!

I thought I had an inhaler at home but I didn't.  I must have thrown it away when we moved last January.  My chest and lungs felt tight and just walking or talking showed me I wasn't getting enough oxygen.  So I just collapsed on the bed and slept the day off.  My sweet husband had taken the whole day off to watch the girls after the surgery.

When I awoke for dinner I felt better but still had the oxygen problem.  I realized there was NO way I'd be able to care for my girls the next day.

Then the body of Christ came to the rescue!!!!  My sweet Bible study at our church coordinated between themselves to play "tag-team".  They were there yesterday all day, even into the night because Matt helps with Awana and I needed help taking Olivia to bed.  Then today, another sweet family came to play with the girls until their nap times, getting them fed, and doing extras like cleaning.  I got to lay in bed the whole time (sleeping on accident!!!).  And Matt will be home when the girls wake up from their nap and be here for the rest of the weekend.

This has helped my healing process so much. We were praying for help for me and God answered yes in all the situations.  It was so encouraging to see His hand in it all.

I am on a treatment week for Lyme, so I've got that on top of everything else.  But right now, my biggest prayer request is that my lungs get back to normal.  I feel them getting slightly better every day but it is so hard to actually not have the wind to do much of anything.  I can try and push through it all I want, but it's impossible.  I actually feel like I'm going to faint.  So I'm stuck until I heal.

OH, and my doctor did prescribe an inhaler, and a sweet friend brought a nebulizer before the doctor could call my prescription in, so the day after the surgery I had some relief with breathing treatments.

There you have it.  Still waiting for a call about the biopsy.  They said it could be today but more likely next week. I'll let you know!  Enjoy your weekend!

Wednesday, September 28, 2011

in a state well enough to write

Thank you so much for the prayers you have given on behalf of us.

The surgery went well!  The doctor couldn't/wouldn't let us know his preliminary thoughts about what the lump was.  He said it was about as big as a man's thumbnail and it didn't go too deep.  He said we MIGHT hear the results of the pathology report on Friday but more likely next week.

There was a slight complication with recovery.  I had a reaction to one of the gases used to knock me out (so is the theory by the anesthesiologist) which left me coughing so terribly and ending up with a rattling chest.  This sure got a lot of staff's attention!  The anesthesiologist said it was called Post Operative Bronchio-something?   Matt got a little pale watching me, especially when all the machines were beeping around me (he said he hated seeing me suffering so....sweet and caring husband!).  I had two breathing treatments because even after the first one, all they had to do was feel my back and they could feel the rattling.  The second treamtment helped much more.  So they held me a bit longer than originally planned.  But once the breathing was under control I was able to go home!

I am pretty miserable because while the rattling stopped, by lungs still hurt SO bad.  I start breathing terribly hard when I sit up or talk for a minute or two.  That on top of the pain from the incision (which is small!!  And I'll take a pic of my shaved hair later) :).  So I will stop writing for now but all in all, we are thankful because things could have gone a lot worse.

Thank you for praying and continuing to pray! And thank you, God for being with us and always caring for us every day!

ready for surgery

Please pray for me!  I go under the knife around 8:30am (CST).  Pray that the surgeon will have wisdom and be well rested :).  Pray I will come out of anesthesia okay and not suffer too much from it's effects.
Thank you!

Tuesday, September 27, 2011

peeved

So my surgery is tomorrow morning.  Last Friday (a few days ago), I had to do pre-admitting and get blood drawn, etc. in preparation for the surgery which will make things go much more smoothly as we check in tomorrow.

ANYhow, the admitting person took great interest in the fact that I have Lyme disease.  But not in a medical-I-don't-believe-you way.  She really was interested.  She asked about when I was bit and how I was diagnosed, etc.

THEN, as a side comment as she was telling me that the surgeon and the anesthesiologist would be coming to talk to me right before the surgery, she said, "The anesthesiologist will probably be interested in your Lyme disease actually."  I said, "Oh."  And she continued typing and preparing.  Then I decided to ask, "Wait, so WHY will the anesthesiologist be interested in it?" expecting her to say, "Oh well, that anesthesiologist had Lyme too."

But no.  She said, "Oh well, he'll be interested because, you know, Lyme is blood-borne......"

"OH!!!" I said.  And then I started to stew!
Lyme disease blood sample

They don't believe you when you say you have chronic Lyme.  But the minute they are going to be around your blood, they have full confidence that it's not "all in your head".  Wow.

I'm sure many of you know this, but did you know that if you have Lyme or have every had Lyme, you cannot ever again donate blood?  Another example of the medical community believing you when otherwise they wouldn't.

*sigh*  I'm not mad and I won't BE mad at the doctors tomorrow because I like to believe in most cases it's just a lack of information for most of them.  But the general idea that they believe you and don't even ask for proof when they are dealing with your blood --- THAT makes me peeved.

Monday, September 26, 2011

GIVEAWAY (Winner announced)

And the winner  (randomly generated at Random.org) is ALYSON!!!
Send me your address and the stationary set will be sent your way immediately.

(If you left a comment but already has "liked" Today......'s FB page in the past you got the 2 entries as stated in the rules.  Just wanted you to know you got treated fairly.) :)


More giveaways to come!!!!  Thanks for participating!!

Friday, September 23, 2011

GIVEAWAY

Here's a little light to brighten your otherwise dreary life (if you're ailing from a chronic illness).  A giveaway.  And you don't have to be ailing to enter this giveaway.  If you're a reader of the blog then by all means, please enter for a chance to win.

Here's the deal, you can enter 2 times.  Once by leaving a comment.  If you don't know what to say in the comment just say, "hi".  That will get you one entry.  But you'll get TWO entries if you press the "like" button on Today I Feel Exceptionally's Facebook page - CLICK HERE to do so now.  So you got that?  One entry if you leave a comment.  Two entries if you leave a comment AND "like" Today......'s Facebook page.

Here's the prize - Handmade (by me!) notecards.  Set of 5 notecards w/envelopes.  These are perfect to send a friend a note of encouragement or a thank you card.  Use them for whatever reason you can think of!

You have until Sunday night at midnight (EST) to enter.  No more than two entries allowed (following the specifics above).  The winner will be chosen at random via Random.org's drawing generator.  And winner will be announced Monday!!!

The winner will need to provide me their address so I can mail it to them and you can do so privately by emailing me once I have announced you have won.

Happy winning (hopefully)!

If you think that this "Like" button below will let you 
"like" Today's..... Facebook page, it's actually a like 
button for this POST.  So if you want your "like" of 
the FB page to show up,
don't click on this one (unless, of course, you want to share this giveaway with your friends)
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Thursday, September 22, 2011

less calm :)

Oh my deary me.  While the appointment on Tuesday went well and I really love my surgeon and think he's very wise, it turns out this lump is still in my neck.  And instead of it being a quick procedure while being awake (local anesthetic), the surgeon thinks it much better to put me completely under.

So next week (yes! THAT quickly!) I will be hopping on an operating table early in the morning (on a treatment week, no less) and being put to sleep so they can operate on my neck.  The reasons are many and I trust his decision to do it this way, but it does make my whole "calmness" sort of come down a notch.  Being put under general anesthesia makes me a little more worried and I just hate the feeling after as you recover for the next day or so from all that anesthetic (while watching two Littles).

I've already spoken with my LLMD and it seems that none of my meds will interfere and I can even continue to take the antibiotics for treatment.  Yay! Now I get to recover from anesthesia AND fight Lyme bugs next week.

So I will appreciate your prayers next week and leading up to next week!  I sure could use a message to my body that it's okay to relax and sleep all night.  Even when my head seems calm, my body freaks out when stressful things are about to happen so I have been having very interesting nights of un-sleep.

But I'll tell you what, even with bad sleep and this stress on my body, I am still feeling so much better than I was a year ago.  I just keep standing amazed at how far God has used the doctors to bring me.

And you know what else?  The surgeon suggested we test the "lump" for (among other things) Lyme&Co.  I didn't even bring it up!!!  This is nearly a miracle because doctors in my state get in real trouble with they TREAT chronic Lyme and most doctors I've told that I have it or that I want to get my children tested have scoffed at me in a very rude way. So I'm sorta shocked that he would bring it up without me having to ask him to test it.

I'm blessed that I have had some "good" encounters with doctors here.

To lighten things up, check in tomorrow for a giveaway!!!

Tuesday, September 20, 2011

calm

Today is the day.....well, not THE day where the "lump" comes out.  At least, I don't think so.  I believe it is just a CONSULT with the surgeon.  But my general doctor seemed to think they might take a look at it and say, "Let's take it out now."  So I guess that might be a possibility.

But now that I've had a week to think about it and be a tad anxious about the whole thing, I'm exceptionally calm today for some reason.  I know my church family is praying for us and so many others and so that does probably have a lot to do with my calmness.

Anyway -- I'll let you know how the appointment goes.  It will probably just consist of, "Yes, I feel that lump.  Let's schedule your surgery." :)

P.S - Giveaway coming soon!

Thursday, September 15, 2011

lumpy

This is a PSA :)  Well, you know...a bloggy service announcement.

So I've had this small pea sized lump at the base of my skull for about a year. I don't remember exactly when I noticed it but it's been there for a year.  And it changes in size.  Up and down.  Almond to pea, pea to almond.  It doesn't hurt.  And when I get lymph massages, it doesn't react.

So FINALLY, after thinking about it for months, I did it.  I went to a regular old doctor about it.  He says to be safe it should be removed.  I'm having a lump removed.  That sounds scary, right?  I don't feel scared.  All this year I just attributed it to Lyme.

I think we do that a lot.  It's easier to say it's a "Lyme thing" than to go to a regular doctor who might shun our disease but treat something that may not be Lyme related.  You know?  Just because we have Lyme and Lyme mimics other diseases, doesn't mean that other stuff can't happen to our body.

I won't even tell you the two possibilities that this lump could be based on my symptoms and how the lump feels...but let's just say it was super easy for me to say it was related to Lyme.  The symptoms could easily be Lyme related OR they could be something else that is NOT Lyme related.

My LLMD is big on not taking chances.  So when I ask about weird stuff, most of the time they tell me and explain WHY it sounds like it's only Lyme&Friends.  But sometimes?  They say it might be Lyme, but go get it checked out because it definitely might NOT be Lyme.

So that's why I'm saying -- if you've got some weird thing going on and your gut is telling you it may NOT be Lyme related but it's easier for you to pretend it is -- just go get it checked out.  This big deal I made in my mind about seeing a regular general practitioner was actually so much easier than I thought it would be.  The doctor was great and instead of me going on and on about how I have Lyme, I just let him focus on the lump and he asked questions about whether I had other symptoms that go along with "lumps".

And since the procedure to take out the lump is not general surgery, we both decided it would be for the best that I get it removed so we know for SURE just what it is.  I'm praying it's nothing.....and actually I really have no anxiety about it.  I more just want to get rid of it and know what it is so I don't have to constantly think about it.

I'll let you know.....

Tuesday, September 13, 2011

victorious

Okay, okay, not completely because I know this is just PART of getting better, but it felt very very good to be able to take my dad (who was in town just for the weekend) downtown and be able to walk.  WALK.  Not be in a wheelchair being pushed around.  We have done this "downtown" routine many a time in the last months with visiting relatives and friends and each and every time I was in a wheelchair.
STANDING......and happy and holding my daughter.
Now, I'm not saying I didn't have some consequences after.  When we got home my legs hurt really bad and I had to apply the pain patches but that's better than feeling like you can't walk at all or so drained of energy that you can't move.  I'm seeing small victories and feeling a lot more hope. I know this is an up and down disease, but I'm really enjoying these ups lately!!  Thank you, Lord!!

Friday, September 9, 2011

excited

That is the face of a Momma who, on a Flagyl day, was able to get up early, get both kids out of bed, dressed, and fed by 8:30am when we walked out the door to drive to my first ever meeting of MOPS.

*sigh*  I'm tired, crashing on the couch, and just plain worn out but it was so worth it.

I feel excited.  This is the first time in a long time that I've been able to make any trip out of the house with both kids in tow....let alone having to prepare them to leave the house by myself.  I'll admit, I did get some stuff ready the night before, but that's just good planning and thinking ahead, right?

It was so fun to get together with other moms with kids and I think MOPS is perfect for the chronically ill because it only meets ONCE a month!  If I did this on a FLAGYL day, I think doing it on a normal  day will be a lot easier.  Looking forward to this year!

Today is my last day of this new round of meds and I get a two week break.  Yay!

Wednesday, September 7, 2011

chopped

I always want to grow my hair out long.  I see pictures of when my hair has been longer (which never seems to be for a very extended period of time) and then I get it in my head that I want it to be that long again.  My hair doesn't grow SUPER fast, so this process usually takes about a year or so.

So lately my hair has been what I would consider "long" for me.  And this week especially I have realized, as I always do when it is this long, why I always must go chop it off.  My husband was making fun of me in the last month as I've talked about wanting to cut my hair.  But I figured it out and need to put it out there permanently so I'll remember next time I want to grow it long again.

I have a lot of hair; thick hair - heavy hair.  Lyme disease doesn't help the fact that I lose a lot of it too.  But at least I have so much that it doesn't look patchy or anything.  But the problem with my hair being so heavy, and it being long, is that my scalp hurts!  I've had a sensitive scalp since I was a young girl and my mom would comb my hair straight after a bath.  I can't say whether it's a Lyme thing, but I haven't met too many others who have a scalp like mine.  

Especially when it's long (but this can happen at any length), my scalp hurts if I wear a pony-tail for more than half a day.  If I wear it all day, then when I take it out, there is an actual bruised feeling all over my head where the hairs were being pulled.  When it gets long, I get more frequent headaches from the weight of it.  It's just not a great thing even though I love how it looks.  

So I got it cut.  And it's SO much lighter now.  My headache lifted instantly when the hair was gone.  It's great!  And yet, I know---in a month or so, I'm going to forget what long hair does to me, and I'm going to declare to my husband that I am "growing my hair out".  And he'll roll his eyes as he usually does because he thinks I'm silly for wanting a change so soon :)

I'm curious -- do any of you Lymies have sensitive scalps (as in, hurts when hair is slightly pulled or combed)?

Monday, September 5, 2011

green

Happy Labor Day (those of you in the U.S)!  Sorry I haven't been on much.  We've had an extended-family crisis that has caused us to use most of our time to pray and not think of much else.  But that issue is settling down a bit (it involved a little newborn family member who needed lots of prayers and she is doing a LOT better now but still needs our prayers).

It ALWAYS surprises me that when dramatic issues arise like that or when holidays come (like today), Lyme doesn't take a break.  So I haven't had much relief from pain and ickiness from the meds.  And anxiety (from watching dear, loved ones go through tough times over the last week) only made it worse.  But I'm thankful for the trial to cause all of us to grow closer to our Lord who has been and will be in control all the time.

So anyway, I will try to blog again a bit more this week.

Love the status of a friend today on Facebook - "It's not easy being green....."  Ain't that the truth for us Lymies (and families).