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’.

One sickie, two sickie, three sickie, four…

Oh my am I behind in my record-keeping. That’s problem because we’ve had SO many sickies here lately.

Dad’s back in the hospital and has been for a week.

BOTH kids were put on 4x daily nebulizer treatments last week.

I’ve been slowly (SLOWLY) getting better after pretty much being completely out of commission for all intents and purposes since Jan. Had another med change last week after I called my doc to ask a ? and he had the nurse call me and tell me to “be here at 1:30!” lol

Turns out my tendons had been on the verge of rupture for several weeks. Go figure! He changed my meds, wished he could do more tests but opted not to since I have no ins, and told me to ride along with my folks when we brought my dad in the following week (would be tomorrow).

Dad’s appt is currently cancelled, though, since he’s still in the hospital.

Anyway.

I haven’t gotten much laundry or dishes done at all, just barely enough to get by. I have been getting a meal plan made up and have been keeping the groceries under the $80/wk I just haven’t been getting the details posted or recorded.

Besides everyone being sick, my computer is really sick, too. In fact, it may be dead. I can’t even get it to turn on. =(  ALL my pictures are on there for the last 5yr at least, and of course all my emails and bookmarks and personal files.

I’m hoping my brother can rescue the important stuff somehow. In the meantime, I’m having to use Mike’s computer to do anything. That means I pretty much don’t use the computer. lol

One thing about it… I have had way more time to get stuff done. I’ve been spending WAY too much time reading blogs apparently!

It does make it difficult to keep up with coupon deals and the like, though.

Guess that’s it for now. I’ll try to get some of the counts better updated in a day or so.

Groceries and Dad again

That seems to be the standard theme around here lately. Probably because I’ve been too sick/busy to even THINK about anything else… let alone blog about it.

Went grocery shopping for the first time this month. I spent $80.82, so 82¢ more than my budget for the week, plus I still need bread. =(

BUT!!

I didn’t go grocery shopping LAST week at all. I’m still not ‘ahead’ because the week before I stocked up on the chicken which used most of last week’s budget.

However… =)

I am almost (I still need to get a little more ground beef stocked) at the point of being able to float by each week needing only the bare essentials replaced… milk, bread, cereal, fresh fruits, and toilet paper. LOL

I bought some soaps today, so aside from laundry detergent (which I will likely be making up a batch of DIY stuff soon) and dishwasher soap (which I will likely be trying to replace with vinegar and baking soda), I shouldn’t even need much in the way of non-food groceries for awhile.

I have shampoo, toothpaste, deodorant, liquid dish soap, bath soap, lots of ziplocs, etc. I even got stocked up on cat food (well, the canned stuff anyway).

Also, I got the kittens collars and bought a new phone. Both things were on my list to purchase with ‘leftover’ grocery $$ when I could, so I can scratch those off the list now and move on to the next thing. =)

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Tomorrow is going to be an interesting day.

Dad is still in the hospital, but they tried to send him home today. Mom said uh-uh because they still hadn’t gotten him eating anything more than clear liquids, nor have they given her any kind of instructions on his care or told her what is going on or what the plan is for his surgical site (still held together with what they call “spoons and wires”). Also he has been VERY disoriented and confused, not to mention depressed. He’s hallucinating, too!

He is aware that his brain is not functioning properly and when Mom said that if she needed to exercise her medical power of attorney to refuse discharge from the hospital (he wants to go home so bad, poor guy!), he told her that he hoped his brain cells would be functioning enough to realize that she is only trying to do what is best. So it seems that he is worried his brain is getting worse… or maybe he knows for sure it is getting worse… or something.

Anyway. It’s gonna be real interesting to see what happens tomorrow since the hospital’s infectious disease ‘person’ (an RN, not a doc) will be reporting Dad’s extremely positive ehrlichiosis (a tick-borne infection) test results to the CDC. His primary doc HAS been informed of the test results and so far has done NOTHING with them. This is an infection that is supposed to be treated if even SUSPECTED. In other words if the docs think you MIGHT have ehrlichiosis, they are supposed to start treating you with doxycycline before the test result comes back to confirm it. Why? Because it can kill you if they wait too long to treat.

Now obviously it did not kill him before the test result came back, but he should have been prescribed the antibiotics back before they drew the blood even! That was a month ago!

*sigh* It’s all just so frustrating and my poor mom is about at her wit’s end trying to get someone to take care of Dad!

It is snuggly cold here today.

I was woken up this morning by Mike’s boss. Apparently he was late in because of all the ice on the roads. I gave him a cell # to try and then tried to go back to sleep. It didn’t last long. The kids’ school called about 15min later to say school was cancelled for the day. After that, I turned the two alarm clocks off and snuggled in for some yummy sleep. Except I spent more than a few minutes worrying about my hubby maybe being stuck on the side of the road in his car with no heater. =( I said a prayer for him and then fell into a sleep where I had some crazy dreams.

Anyway. The kids came in around 9ish and I told them it was ok, they weren’t late, school was cancelled. They went off to play Wii and I went back to sleep. I finally got up around 11am and came out and took my pills. Then I snuggled down on the couch with some pillows and a couple of thick blankets.

The kids and I watched TV for awhile. They watched a movie while I slept. Then they took turns playing with the Wii and the kitties while I dozed off and on. The kitties kept wanting to snuggle in under the covers with us, too. Their poor little ears were so cold!

Mike went by Costco after work and brought home sugar, coffee, cheese, and hot cocoa. Kinda like when the guy would go into town in the pioneer days, huh? LOL

So it was a cold, snuggly day.

I would’ve enjoyed it lots more if I wasn’t so durn tired and hurting so much!

It seems that while it was ‘ok’ to reduce my B12 injections from nightly to 3x/wk, it isn’t ok to go more than 2-3 days without one. I slip back into the extreme exhausted, sleep-all-day stage. My last shot was last Wed. Mike keeps sneaking off to bed (and to sleep) before I get it ready. I imagine I will be zonked tomorrow too. =(

The hurting? Well aside from that being normal… lol Really though, some bits of me have been way worse the last several days. Until yesterday my left knee was badly swollen and painful. Bad enough I actually put out a request for a cane. Seriously. Stupid me made it way worse the day I went and volunteered at the kids school. I went up and down WAY too many stairs, and then I stupidly volunteered for the mopping as well.

Both Mike and my doctor got onto me for that one. *sigh* I did spend the next day in bed so as to stay off it, but it was still swollen and painful for days afterward.

Today my knee was not as swollen or painful, but I just pretty much stayed stiff all over. It’s the arthritis caused by the Lyme Disease that makes me so stiff. I’m guessing the weather aggravates it?? I dunno. I just know my hands, wrists, ankles, feet, and hips all ached badly all day (when I was awake).

I feel like an OLD woman some days. My kids are so sweet, though. Meagan brought me a cup of cocoa and said she’d take care of me. =)

Oh, and the ladies meeting? Cancelled, too. So I didn’t have to get out in the cold at all. Yea!! =)

School is starting late tomorrow (if at all), and Mike will be home, so maybe I’ll make it a snuggly day again. =)