Ladies Retreat Was Great!

I just got back (well, last night I got back…) from a wonderful ladies retreat.  The theme was Hands. Hands of God, as well as our hands being used by God. We had great speakers, awesome teaching, yummy food, and lots of fun, too. Plus, I even got to stay the night in a hotel… without kids. =)

I stayed in a room with 3 other ladies. The oldest (though not old by any means) of us went to sleep fairly quickly. The rest of us, though, stayed up till about 1:30am playing a new Monopoly card game and talking. I got my toenails painted and decorated, too.

When I got back home I found a (STILL) sick Matthew. He had a fever and was throwing up yesterday morning and of course his asthma is still giving him fits. He’s scheduled for an allergist appt this Tues. We’re hoping to get started on allergy shots so that maybe his asthma will improve.

We’ve grown! and grown again!

Matthew was finally prescribed growth hormone replacement therapy at the last endocrinologist appointment.  That was the beginning of July.  Since he was prescribed the same brand as Meagan, and I had a bunch of extra vials in the fridge, I went ahead and got him started then even though we didn’t (and still don’t!) have a shipment of meds in his name.

He’s been to the pediatrician 3 times in the last 3wks, but I never caught the height until today. He was 51″ at the endo visit.  He was 51.5″ today. =)  He had measured himself on a doorframe the day he started and again about a week ago.  He was so excited when he saw a visible difference! He measured the gap and discovered he’d grown half an inch.  Today that was confirmed.

Also… our family has grown yet again.  The pets are now 5.  Samson, Delilah, Rachel (da bunny), Gracie (the starved, but looking much plumper and very healthy now,  stray found on our porch), and Freckles… a kitten found by a neighbor girl when she was visiting her mother in a neighboring town and brought back here… and then immediately to our door.

Freckles -so named because of the splotches of color on her back-  is mostly white with a little ginger… her ‘freckles’ and then ginger tabby stripes on her head and tail. Very playful, very affectionate, very sweet.  NOT starved, no poopy problems to deal with like with Gracie.  Just an abandoned (or stray) kitten about 12wks old.

So there’s our growth report. lol

Mike says we are to grow (in #) no more!  Thing is he said “no more kitties”. He didn’t say anything about fish… Shhh! hehe  ;-)

Actually, I thought we had stopped adding kitties when we got the twins back in December. Then Gracie showed up desperately needing help. And now there’s Freckles needing a momma. I love kitties, but I do have to agree with Mike and say I hope no more needy ones present themselves to us. I’d have to turn it down, but it’d break my heart having to do it.

Missing church…

It’s Sunday morning, and it’s not looking like we’ll make it to church.  Admittedly, I did wake up late, but that’s not the problem. Both kids’ asthma have been giving them fits.

Matthew’s been having problems with his all summer long.  I’d taken him in a couple of times earlier in the summer, but since I know the drill, I just did the medicatin’ at home.  I’d taken him in in the hopes that the doc would add his Advair back in.  No go, so we just put up with the inhaler or nebulizer several times a day.  A couple of weeks ago, I had to take him in because of the rage issues were getting BAD again.  We were supposed to go back in 2wks for a med follow-up (we upped his Strattera to 60mg).  The next week I took him in for his asthma because, well, we were both tired of him not being able to breathe well all summer.  Thankfully, this time the doc said to add the Advair back in.  So he was getting better.  Notice I said was.  The last two days, he’s having troubles breathing again.

Meagan, on the other hand, did fine all summer, but once school (and running laps) started up again, so did her asthma.  This last week she said she was needing to use the inhaler after PE every day.  Thursday evening she was coughing (the dreaded asthma cough) all evening so when we got back from a revival service, I hooked her up on the neb.  Then I hooked her up again.  Friday after school was basically a repeat.  Friday evening I had her add the Pulmicort to the Xopenex.  After that treatment, she was still real tight, so I had her do another Xopenex.  She snuck off to bed right after, but I highly suspect she needed yet another round of the Xopenex.

Yesterday was more of the same.  So this morning, after I woke up late, I had to get both kids on their nebs.  That was 40min ago.  Meagan *says* she can breathe better and doesn’t need a second round, but I haven’t actually listened to her yet.  (I need to find my el cheapo stethoscope!)  Matthew finished his and then went and sat on the pot for 20min.  Now I need to go and start the pill-taking coercing/forcing.  No telling how long that will take, but considering the church service starts in 19min, I’m not optimistic about making it. =(

I’m not very happy about that, either.  We are having a guest preacher today, and he’s good.  VERY involved with spreading the gospel over in Israel, and I was looking forward to hearing him this morning.  Ah well, hopefully we can at least catch the evening service.

It’s Invisible Illness Week… who knew?

Unfortunately that is exactly the problem with invisible illnesses. They are the ones that cause devastating, debilitating effects, but to others if they find out the patient is ill, would say… They have _____… who knew?

The CALDA blog called Touched By Lyme had an interesting entry recently… “TOUCHED BY LYME: 30 things you don’t know about Lyme disease” Here’s mine—

30 Things About My Invisible Illness You May Not Know

1. The illness I live with: Lyme and other tick-borne infections
2. I was diagnosed with it in the year: 2008
3. But I had symptoms since: birth – 1978
4. The biggest adjustment I’ve had to make is: to not volunteer to help do things that tax me physically
5. Most people assume: Lyme plays itself out in a few weeks; sooner if you get a few days of antibiotics
6. The hardest part about mornings are: first getting out of the bed
7. My favorite medical TV show is: Mystery Diagnosis but I only see it infrequently because I can’t afford cable.
8. A gadget I couldn’t live without is: my shower seat!
9. The hardest part about nights are: getting to sleep around the pain and anxiety
10. Each day I take 42 pills & vitamins.
11. Regarding alternative treatments I: have not tried any
12. If I had to choose between an invisible illness or visible I would choose: VISIBLE, one that SCREAMS I’m sick
13. Regarding working and career: I can’t work
14. People would be surprised to know: how much pain I have and how often I am bedridden.
15. The hardest thing to accept about my new reality has been: I can’t do things I want to do or used to do.
16. Something I never thought I could do with my illness that I did was: go to junior church camp as a counselor!
17. The commercials about my illness: are non-existent.
18. Something I really miss doing since I was diagnosed is: waking up, going through the day, going to bed… without having to stop and take a bunch of pills.
19. It was really hard to have to give up: homeschooling
20. A new hobby I have taken up since my diagnosis is: sleeping
21. If I could have one day of feeling normal again I would: would not fully know it, as I’ve been ill since birth.
22. My illness has taught me: I have to take care of myself in order to take care of my family. Also, how to go to a doctor and talk to him about ME.
23. Want to know a secret? One thing people say that gets under my skin is: it must ‘all be in my head’ since Lyme is ‘cured’ by a few days of antibiotics. My doctor isn’t looking to cure me. Just get me into remission.
24. But I love it when people: ask how I’m doing and actually want to know the truth.
25. My favorite motto, scripture, quote that gets me through tough times is: God will not put on us more than we can handle. Jesus will help me through.
26. When someone is diagnosed I’d like to tell them: as much as I can about what to expect in the coming months, and that yes, it WILL get better… eventually.
27. Something that has surprised me about living with an illness is: how totally it affects every little thing you OR your family do.
28. The nicest thing someone did for me when I wasn’t feeling well was: prayed for me and told me they were.
29. I’m involved with Invisible Illness Week because: Most of my family (parents, brothers, children, myself)and some dear friends of mine all have one or more invisible illnesses.
30. The fact that you read this list makes me feel: blessed.

I’ve read through some of the others and one thing that I have to agree with them on (but I answered differently) was that most people think I am ‘normal’ or ‘not sick anymore’ – if they ever knew I was. These infections mess up and take over so many different things in the body it takes months, years in most cases, to be ‘not sick anymore’. I am doing so much better than I was a year ago, but I am nowhere near ‘not sick anymore’.