ZZZs with RP

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For a long time, I've had to fight falling asleep during the day. Sometimes I give in and sometimes I don't. I thought I was narcoleptic.

This article says that sleep problems are pretty common among RPers (people with retinitis pigmentosa).

Since my late twenties I've had a hard time sleeping through the night. I'd wake up around 2 a.m. Sometimes I can fall back to sleep; sometimes I can't. Then when I am wide awake, I get the "morning after" withdrawl symptoms of not sleeping right. I could be reading something and nod off.

I remember during my driving days, I would be fighting sleep on my way home from work. How scary is that? I always blamed it on getting five hours of sleep or interrupted sleep.

Now I don't have to. Or maybe it just compounded the problem, along with stresses in my life.

Still, I thought it was interesting.

Tubosclerosis

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Yes, I am playing with words. Tubo-sclerosis isn't a real word. It has nothing to do with TB.

In Medical Terminology (I LOVED that class!!-except for the pronunciation part-how can a severely hard-of-hearing person pronounce all these medical words? I had to really concentrate on them) atherosclerosis (ather/o=fat/plaque, -sclerosis= hardening) meant fat was thickening inside of the arteries, sometimes leading to occlusion or blockage. With "tubosclerosis," [the hardening of the tubing of the hearing aids (HAs)] the tube that connect the earmold to the BTE (behind the ear) model can get blocked if cerumen (earwax) gets lodged up in the HA tube. The sound can't reach the ear). Most of the time, it's just wear and tear. Regular cleaning of the earmold is important, though. About once a year or so, tubes get replaced.

It's just a matter of a few minutes of minor surgery to take the old tubing out and replace it with a fresh, flexible tube. It gets floppy, but it's better than having the hardened tube cause everything to whistle in your ear and affect the quality of sound coming into your ear.

I emailed my audie to schedule an appointment. She said that Hubby could drop it off and pick it up at his convenience if he wanted to. So he did that, and the appointment was canceled. I put my HAs in its special box and then put it in a plastic bag with my name on it. All he had to do was drop it off at the receptionist's desk on his way to work. One problem solved.

New Problem: I'm deaf. Sure, I'm not getting much out of the left ear at all anyway, but the HA helps the right ear pick up sounds I can't with the naked ear. I cannot maintain a conversation without my HAs. I know that everyone will get frustrated with me. (And I will be frustrated not only because I can't hear, but because I know that they are frustrated trying to talk to me. Make sense?) That sounds bad, doesn't it? There are only a few people who have a lot of patience. Anyone with hearing loss can attest to that. It's human nature. All I can say is: Learn some signs!! Or get some pen and paper. I try to lip read, but I am not an expert lip-reader. I relied on sound too much, I guess.

New Problem Solved: I have my old hearing aids. I usually always give them to the Lion's Club. They collect old and used HAs and repair them if necessary and give them to those who can't afford HAs. Just wearing it was little less frustrating conversation-wise for all. The tubing wasn't hardened at all. I guess it just wasn't exposed to the air. I kept it in its special container. :) It's my back-up.

Another Problem: Adjusting to listening with old HAs. Everyone sounds funny, farway-like. More "tinny" and hollow than usual. Brain retrain: Learning to hear-again.

Another Problem Solved: Getting my HAs back with its new tubing. Thanks, audie. Thanks, Hubby. Sounds great. Now things are back to normal.

On second thought, what's NORMAL?!?

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Angel (remember, don't let the name fool you):

"Mom, you matched up my socks wrong. I have a strawberry (design) on one pair of socks."

She got new socks. They are all white, some with yellow or pink edging. One pair has the strawberry on the side. When I folded up the socks, I always look at the edges to match them up and the plain white socks with the pink edges are the same as the ones without the strawberry on it. (I have been known to match up the wrong socks before.)

I look at her apologetically. "I'm sorry, Sweetie. Maybe you should start matching your own socks."

The look on her face was precious. It was like, HUH?

I could see the wheels going around in her head: Oh no. What did I just do? I just gave myself a new "chore." I should have kept my mouth shut.

*****

Upstairs hallway light: It gets turned on when one ascends the steps to get upstairs. It's supposed to be off when one gets up there. Key word here: SUPPOSED to be.

Many times, when the kids go to bed, they turn on that light. I can go upstairs without turning that light on. I just count steps. I get an idea of where I am. I guess I try to get "antenna" signals so I develop a sort of a sixth sense (to get around in the dark, I mean).

If both girls go upstairs, they argue. "She turned it on!" "It's her turn to turn out the light!" A parent's headache. Sometimes I don't notice the light's on. And get angry when I find out that the light's been left on.

The other night, I was tired and I wanted to go to bed early. Angel and I were going to bed at the same time. She suddenly "remembers" she has to go to the bathroom. You know the drill: Stalling tactic.

I decide to leave my bedroom door open to see if she'd turn off the light.

I feel her bounding up the stairs. Boom, boom, thud. Top of stairs. She gets into her doorway.

I holler, "Turn off the light!"

She stops in her tracks, turns off the light, and peers into my darkened doorway. As she proceeds to shut my door, I spy her hand reaching for the light switch.

Oh, no, you don't, I think to myself. "Leave the door open." Her hand drops as the other one pushes back the door. "'Night, Mommy."

Nice try. "'Night, Sweetie."

Snail Mail

Since the CI (cochlear implant) has been approved last week, I emailed the facility, but they have not received a letter yet. Nothing has been set up. I will have to send them a copy of my letter and fax it to them. I'll have to go to the library to get it faxed. I'll keep you updated.

It makes me wonder....if this is common procedure to mail a letter to the insured right away and have a carbon copy of the letter sent to the facility via the slowest "snail" possible? Do insurance companies "buy" time by choosing Speedy the fastest snail, reserved for "insured people" and Pokey, the old snail that can't even outrun himself?

Scenario:

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"Send these letters to our policyholders pronto, Speedy. Can you do that?"

Speedy tucks the letters into his duffle bag, gives Insurance Agent a quick nod, and tugs his baseball hat down over his smooth yet slightly glistening eyebrows. His shout of "No problem-ooo" echoed as he slid down the corridors.

Insurance Agent smiles at the fast disappearing Speedy. Holding onto carbon copies of the same letters, he looks for Pokey.

Pokey is snoring into his coffee. Insurance agent pokes Pokey.

Pokey shouts with a startled "Wha-what? WHAT?"

"Got some letters for you to deliver," Insurance Agent waves a thick pile of letters in his face.

"What about Racer, the new guy? He's faster than Speedy."

Insurance Agent shakes his head. "Nope. We still gotta iron out the kinks in the email system. Racer isn't all that new anyway. There are privacy issues. We have to update our disclaimers. Racer is suspended for now."

Pokey rubs his slimy forehead and resignedly sighs a long drawn out whoosh. "Okay, where to?"

"They go to the doctor's offices in the clinics and facilities."

"That figures. I get lost in those places."

Insurance Agent winks. "That's why you're the best man for the job."

Pokey nods, leisurely takes a sip out of his coffee mug and slithers off, sleepily mumbling, "See you next month."

To Cane or Not to Cane

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That is the question.

I've mentioned this before and I'll mention it again. I have an on-going personal struggle with this topic. It takes an emotional and mental strain on a person to take up the cane. It's going to brand a person for life. I might as well slap a large sticker on my back for all to see. BLIND.

Once I start to "raise cane" (pun intended), it's going to be an emotional upheaval. I know I will feel angry and upset. I just don't like to call attention to myself.

I've spoken, or rather, I've written to on-line friends about caning. Many have had orientation and mobility (O&M) training with the white cane before they were legally blind. They needed to use it to safely navigate in the dark. Some took the training and then left the cane in the closet for a certain amount of time. It could be months or years before they decided to dust off the cane. Then some just carried it around with them, folded up in their backpacks or purses. It's a "baby step" process.

Many have said they'd wished they started using the cane earlier.

It is best to get O&M training while one still has remaining vision. And, there's even staggered O&M training as one's vision gets worse. The training is updated to fit one's visual needs. Listening skills are so important. Those with low vision/no vision listen for traffic, how the tap of the cane sounds (hollow, solid) that can tell the caner that he is in an area with tall buildings or open space.

But what if one has hearing loss? There are different methods in training. Mostly, hearing aids and FM systems are used to help the individual to hear the mobility instructor's instructions and listen for cues. If a caner is deaf, then it's all about the feel of the cane.

I am not an expert on this topic. I am jsut going by what I have learned.

Some caners prefer different kinds of canes: Folding, telescoping, or rigid canes with ball-tip, marshmellow tip, or regular tip. Then there's the length of the cane. Mostly, it's best to have cane be chin-length, though there are some that are at the chest level.

I toss the idea of the cane in my mind. I am scared to go public with a cane. It's humbling. I know I will have large lumps in my throat just knowing that people will be staring. I will have to develop a hard shell or just deal with it.

I still get around okay in familiar places, as long as there's no steps to look out for (wink). I tell myself that I don't need the cane. Maybe a cure will be found and I won't have to use it.

Sooner or later, I'll have to face facts. And convince my family that I will have to start caning for mobility, independence, and safety. I have to keep in mind that I am not the only one adjusting. My family adjusts with me.

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It's wonderful to see Onyx back to her old self again. She's eating. A LOT!! And drinking lots of water. Sometimes I check her water bowl and it's bone dry. As soon as I wash out the bowl and put fresh, cold water in it, I'll get an excited yip and a half-jump from her while I am standing by the sink. :)

I'll throw a plastic horseshoe outside and she's running faster.

I finally got the girls the swimming pool passes. :) They already went swimming. The breeze is cool, so I am betting that they want to stay in the "warm" water.

I found a parent who is willing to pick up Angel in the mornings for school. I just have to find her a ride after school. I have plenty of time. Summer's just started. For right now, I'm cooling it with the phone. I am not hearing so well on it due to a hearing aid maintenance need. I have an appointment next week that can fix the problem in a jiffy. Every time someone's on the phone for me (rare), I'd have to get one of the kids to interpret for me. When Hubby's on the phone, he'll talk to the kids or I will play guessing games.

Okay, this post is getting too long.

Later. OXOX

RP Video and Some Good News!!

This is a video from YouTube about a young man's RP (retinitis pigmentosa) journey. It may give you a better look into the "blinding" world. Remember, everyone has a different story to tell and while they are similar, the progression is different, too. There is a demonstration of tunnel vision in this video, but it is not what I see. I have a bigger "tunnel" so I can see more centrally and it's not peripherally foggy for me. It's a void. A nothingness. It's just not there. It has no color, but I can sense movement in the "blind spots."

Sorry, no closed captioning.

Tunnel Vision

Newsbreaking news (okay, not that newsbreakable considering that it's two days old and wasn't that fragile, but it's NEWS!!)

Drum roll, please....

Insurance company finally approved the CI (cochlear implant). Now comes the next worry....my pocketbook. ;) How much will it cost me? But look at what I can gain. Better hearing. Better quality of life. I know that CIs won't make me a "hearing" person, but I'm okay with that. I've lived with it all my life. But it's great news, nonetheless.

Onyx was still sick. She was throwing up. I was blaming the new food we switched her to and it was affecting her bladder, too. I was wondering if she was allergic to something. She was listless and slept a lot. Hubby took her to the vet. She had a bladder infection and roundworm. Ugh. Back to the meds. But, now she is more playful again. (Big worryfree smile here.)

A few days ago, I was sitting out on my porch steps just gazing down the street without really looking. It was more that I was lost in thought. Someone was talking to me, touching my shoe (I think it was my shoe. I was at the high end of the porch steps and a person would have to reach over to touch me to get my attention.) I've also have not been getting the best "hearing" quality from my hearing aids. I need to get new tubes for them. That's another blog post, though.) It was one of my sign language interpreters from the college. I was just glad to be able to talk to someone without having to work so hard to communicate, but I got "rusty" with some signs, too. I re-learn them fast, though. :) What can I say? I'm oral and don't have much of an opportunity to sign. I don't hang out with other hard-of-hearing or d/Deaf people that know signs.

Hubby had a wide smile on his face when he joined me on the porch. I was thinking to myself, what's so funny, bub? Are you uncomfortable? But when I asked him about it later, he said that I was in my "glory," signing away.

The day after the flood, Angel realized her bike was gone. Oh, no!! It was stolen!! We stopped by a few neighboring houses to see if she left her bike there. Nope. It was gone, probably during the excitement of the flooding.

The next day, she wanted to play with a neighbor kid and came home with her BIKE!! She left it there, but lost her helmet. It must have floated away during the flood. Whew. But she was unable to ride her bike until she got a new helmet (which she impatiently whined about for two more days till it was replaced.)

Flare and her best friend (who slept over) watched DVDs all night. I sat and watched the last half of Juno with them. I could hear them break out into laughter as I was reading the captions.

I remember two instances where I laughed a few delayed seconds after they did:

Juno, a pregnant teen in high school, stops by her dad's house. He says something like, "my puffed up June bug."

The adoptive mother came in to hold her new baby and catches sight of the grandmother, Juno's stepmom or mother. (I got into the middle of the movie so I didn't know which one was which.)

She asks, "How do I look?"

The grandmother says, "Like a new mom, scared ____less. "

Smiles. OXOX

A River Runs Through It

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We experienced a rare storm (the storm of the century) with catastrophic consequences. First there were tornado sirens going off in the late afternoon. Angel told me about the sirens. I don’t hear them unless I was outside (with hearing aids on, of course).

We bolted for the basement. I had to carry Onyx. She’s scared of the basement and wouldn’t budge. Once we got situated, we watched the TV (yes, we have another TV in the basement; it sure beats having a radio. Radios don’t come with closed captioning.) I think we stayed down there a good hour before we decided to get back upstairs to the main floor. Onyx then didn’t want to get back upstairs, so I had to carry her again. She's a big dog and it was awkward.

I turned on the TV in the living room to see what was going on weatherwise. Apparently, severe thunderstorms and tornadoes were not a big priority in this instance.

Angel comes screaming at me. “Mom! Mom!! There’s water on the street!! Can I go in it? Everyone else is!!” I immediately went to the front door. Our street was a river. People were walking in the middle of the newly created river, up to their thighs/knees/mid-shin (depending on the person's height). The water was lapping over the sidewalks. It was halfway between the sidewalk to our house. We were FLOODED.

While Angel was collecting driftwood, kids were playing in the water, even the big kids (a.k.a. adults or parents). In other areas of the city, it was deeper and people were JET SKIING!! Or canoeing. Soon, Angel and her friends were on a air mattress and floating back and forth. It was unreal. (I was thinking, how cool that would be to have all the roads be like shallow rivers and all I would need is a canoe to transport myself to places. No transportation issues. Hee. Silly thoughts like that flitted through my mind. Well, can you blame me? Of course, logically, it wouldn't make anyone else happy.)

Over four inches of rain had fallen (in addition to the six inches we had previously). It engorged the rivers, causing them to overflow. Luckily we were on higher ground. Other areas were flooded big time. We now had a total of almost 11 inches of rain so far this month. For the month of June, it is normal to have just under four inches of rain. We’ve almost tripled it in less than two weeks. We still have another two weeks left of June!! Who knows how much rain we'll get by that time?

I called Hubby shortly after six. (Gotta love the cellphone: you can almost always reach someone with it no matter where he/she is.) I told him about the “river.” He was concerned about the basement. So I went to check the basement. I could see water pooling towards the drain. They were coming in through the walls. Our backyard was an ankle-deep wading pool. That didn't help matters any. Admittedly, half the time, he had to talk to Angel on the phone because I couldn't understand him.

I watched foolish drivers attempt to drive through. Some turned around and some plugged through, causing waves. I was tempted to yell, “Hey, no wake!!” (Hee.)

Hubby came home with a new sump pump via the "Man's Store" (hardware store). Since I was just standing on the porch just watching everyone on the streets, I wasn’t watching the progress of the water pooling in our basement. I wouldn't have been able to do anything anyway. We had about a foot of water in there by then. And it was just drying out!! Ugh. Thanks to Handy Man Hubby, he got the basement drained out. Thankfully, appliances were not seriously damaged.

But, there was more rain to come. CRACK! Lightning ripped through the dusky sky. Then thunder boomed its ground-shaking warning and was immediately followed by another (brighter) lightning. CRACK!! I yelled at Angel to get out of the watered street. I didn’t want her to get zapped. Everyone was getting out of the water, so I didn’t have any problem with her getting out, too.

We weren’t the only ones flooded. I think that the water drained out of the streets within two hours in our area. But surrounding towns got hit and roads and driveways were washed away.

I had a doctor’s appointment the next day. Hubby warned me that I may not get any hot water for my shower. Ugh. I wasn’t looking forward to that. When I got up the next day, I started up the water with dread and warm water came out. Yay. Thanks, Hubby.

Then I got a phone call. My appointment was canceled. I guess the clinic had some flooding issues.

Hubby then asked me, “How was your shower?”

I retort with a smile, “Nice and hot. Thanks.”

He was surprised. “It wasn’t cold?”

“You didn’t fix it?”

“No, but it couldn’t have been that hot.”

I shrugged my shoulders, “Hot enough for me.”

The storm was just not something you’d expect. It was said that storms like these only happen once a century. It's like a dream. It didn't happen. Then I watch neighbors emptying out the contents of their basements to the curb for garbage pickup. It did happen.

Guess what? We are expecting more rain.

It just never ends...

And...how was YOUR week?

For pictures of similar flooding results of another town, look here.


I’ll post some “smileys” soon. I figured that this post was long enough. :)

Cataracts

Cataracts...


Sounds like the Broadway musical, Cats. Cats and acts. Cats are acting...(okay, that was BAAAD...moving on...)


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Seriously, though, there are three kinds of cataracts:


Nuclear cataracts-This is the kind that is most commonly found in the elderly from the aging process. It starts in the middle of the lens.


Cortical cataracts-This is the kind that is found in diabetics and radioactive exposure to ultraviolet rays. This kind starts at the edges of the lens.


Subcapsular cataracts (or posterior subcapsular cataracts)-This is found in diabetics, too. It is also found in young people and those who took steroids for a long time. These start in the back of the lens. Symptoms include glare and night driving and reading difficulties.


Some causes are age-related, secondary (from a health problem or post-op complications from other eye problems such as glaucoma, smoking, alcohol, and diet), traumatic, certain kinds of medication, congenital, and/or exposure to radiation.

Why am I talking about this? Because people with retinitis pigmentosa (RP) can develop subcapsular cataracts at any age, mostly in the 30s. Some have them in their 20s.

My brother had cataract surgery when he was about 37.

If an RPer were to develop cataracts, it develops in the back of the lens. Smack in the middle. Right where the best remaining sight is. When the peripheral vision is compromised, we still have some central vision left. When cataracts start to interfere with that remaining vision, then cataract surgery should be recommended because what remaining vision an RPer has left is precious. Some doctors want to wait till the cataracts are "ripe." As the RPer deals with the blurring vision from the cataracts, the vision is also progressively getting narrower at the same time. Some RPers have the cataracts removed so they can still enjoy the remaining vision they have. Why wait two years to remove the cataracts when the vision is that much worse, too?

It varies, though, for each doctor and the RPer's condition.

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Onyx seems to be better. She was still sick for a couple more days. I think she's better now. (Crossing fingers and toes.) She's getting thin.

When I got up this morning and stepped into the hallway, I could smell the wet smell from the basement. Kind of mildewy and moldy. Ugh. Stinks. Still needs more drying down there. We are expecting more rain. I was reading that it's worse than it was four years ago when we had some flooding and lots of rain. Our basement was the same way. Just the carpets got saturated and anything else that may be in the path of the drain or the floor itself. (Our house is over 100 years old.) I tried to breathe shallow breaths while I was loading clothes into the washer. Ugh.

Ever the negotiator, Angel has a stubborn streak that is bigger than she is. Usually, I can get her to read a book if I agree to read one side. (Of course, if her side happens to have a whole page of typed words and no picture, she'll want to trade. LOL) Sometimes she'll read a book, sometimes she won't. But, when it comes to labels, she'll read them out loud. I am not worried, she is reading at the average level for a child her age.

I hung three loads of laundry on the line. In cool 68 degree weather. With a slight breeze. They must have hung out there a good three hours and were "mostly" dried. The jeans needed more time.

Some clothes were still slightly damp when I brought them back into the house. I put them on hangers, hoping they'll finish drying up that way.

I tested a recipe that was met with mild enthusiam. It really wasn't great, but it'll do. I probably won't make it again. At least, not with all that bread that it required. It was supposed to be a ham and cheese casserole with broccoli and bread cut into tubes mixed in it. Then an egg mixture was poured over it. It's frustrating to try a recipe that didn't look as good as looked on paper. But hey, I'm trying. I am not a fan of cooking, but summer is here and I feel like I have to make everyone happy by cooking more meals. (Too bad there's no hot lunch program for the summer, huh?) Flare got all the ingredients out for me. I really should organize the lazy susan, but even if I did, someone would mess it up on me. I'll have to put that on my "to do" list. Thanks, Flare, for being a helper.

I am going to try to sit down and put together a meal plan, sort of like how the schools have a hot lunch menu for the week. Then I could just get whatever I need from that at the once every three weeks grocery store visit. (Thankfully we have a gas station nearby where we can keep a fresh supply of milk and bread when we run out.) I hope the meal plan idea takes root and it's effective. Old habits die hard, which is opening cabinets and the refrigerator and seeing what I can throw together. Or see what meat I want to thaw out for that day's supper. (See, I'm not organized.) In any case, wish me luck.

Okay. That's all.

OXOX. Later.

CI Update

An appeal was made on my behalf for coverage of a CI (cochlear implant). It was sent around May 22. The appealer informed me that she contacted the insurance company to see if they got the letter. They said they got it, but sent back a letter saying that the information in the appeal letter didn't really "make a case" so to speak. My appealer told the person on the phone to take a good look at the letter she sent and read it. The person did and agreed that the information contained in the appeal letter did indeed qualify as an appeal. She then said that it would take about a month to review it. (I can't help but laugh at the obvious run-around and good use of the six-month time limit to appeal and get approval. Yeah, I'm frustrated, too.)

Before the appeal was sent, I sent the insurance company a letter asking what findings they had that made them think that CIs were not proven safe and effective? I have not heard from them at all. I should have made that letter certified. (I do not trust this insurance company one whit.) But since the appeal letter was sent, I didn't query the insurance company to see if my letter was received.

Will keep you posted.

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We all watched The Eye, a movie starring Jessica Alba. Somehow it was predictable, because I have seen movies with a similar plot. The donor of the cornea manifests herself into the character's eyes and she starts seeing dead people and having the donor's memories and predictions. Hubby was able to rig the DVD to the tv's captioning instead of the DVD's captioning. Yay. I don't like subtitle-like captions.

Hubby bought a magazine chockful of recipes for me. Half of them were slowcooker recipes. Yay. What surprised me most was that it cost $8. I can't see Hubby buying a magazine that cost that much. Bonus: I found a lot of useful recipes I want to try out. Thanks, Hubs. (He knows that the woman's best friend is the crockpot, not diamonds-at least this woman's best friend. Hee.)

Got over 6" of rain last week. The basement was holding up pretty good, then yesterday we found that the carpeting (all remmant carpeting) were saturated with water, so we rolled up the carpet pieces and took them outside. It wasn't heavy, just enough to soak the carpets and anything touching the basement floor. We have fans going all night and all day down there. The carpeting just got in the way when the water needed roll towards the drain. At least it wasn't as bad as the others were-with sewer backups and maybe a depth of a foot of wading water in the basement. :)

Okay, gotta start keeping the posts short. :)

A Little Bit of Everything

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The last few days have been a whirlwind of activities. Unfortunately, I haven’t been able to get family swimming passes for the summer yet. The girls loved going swimming at the public pool last summer. Sure, it was crowded, but they had fun. Hopefully, I’ll be able to do that this week.

Flare played Four Square with the neighborhood kids. I told her I thought she only “hung out” with them. What do you call “playing” Four Square? Her retort? “Being bored.” LOL. (Refer to last post.) She even had “night games” planned, though it ended up being hosted by the kid across the street. She called a few classmates over to play, too. Her friend likes to poke her in the ribs because she liked to hear her squeal. So I teased her and started calling her "Pillsbury Doughgirl." ;) (Speaking of which, she did help me make lasagna for supper. Thanks, Flare.)

Flare picked up her new and used books for the upcoming school year via the Hubbymobile. Hubby went with her to select books with the aid of a knowledgeable helper. I couldn’t believe that the tally ended up close to 300 smackaroos (it sure made me feel like I was smacked by a few roos...). I was floored. I don’t even remember what the books cost when I was in high school. I do know that the books were more expensive for me at the college. I guess I just didn’t expect it to be that much at the high school level. Oh, well. We can resell the books if she keeps them in good condition and doesn’t mark it up. Thanks, Hubby, for taking her there and helping her. I appreciate it.

The other day, we went out to a restaurant and had a sit down meal. Hubby had asked me what I wanted to drink. I said I would have a wine cooler. After we sat down at a table, the waitress stood across the table from me. I thought she was taking orders. She was looking right at me and talking. All I could see was the bright light from the window and her lips moving in wide, exaggerated movements. (Sigh. I am a poor lip reader, though I have been told that I was probably better than I thought I was.) Still, there are still a lot of people out there that think “fish lip” talking is better for a person with hearing loss to understand. I was lost. I looked at Flare and Hubby blankly. She was definitely talking to me. What do I do? Bluff? Guess? I caught “or don't you want anything else?” or something like that. So I said that yeah, I didn’t want anything else.

Hubby immediately said something I thought pertained to the order. So I said that yeah, I’ll have the usual. Hubby again said, “They don’t have the usual."

Huh? No Poorman's Lobster?

He said that they didn't have any wine coolers, what else would I want to drink?

Something that simple was so hard to understand? Ugh. Well, that doesn’t happen that often when we do go out to eat. We don't go out to eat that often anyway. Again, I thought it she was taking orders and it didn’t seem to fit. I always ordered Poorman’s Lobster at almost any restaurant I go to. That’s my “usual.” Not the drink. (Though I still don’t see why I would have to have a “drink” when I am not much of a drinker anyway. My siblings are beer guzzlers. I am around a lot of beer drinkers. I just don’t drink that much. Believe me, whatever I drink just buzzes to my head. I am perfectly happy if I never have another alcoholic drink again. I just feel obligated to have one. I’ll get amusing looks because I prefer water or a soda to alcohol. I do drink occasionally, but it’s probably only four times a year. I do like jello shots, but I am glad I don’t have them regularly. ;)

All I want to say here is that if any of you come across a person with hearing loss, don’t exaggerate your lip movements. Just talk like you always do, just a wee bit slower and clearer. (Not louder, please. It just increases the distortion.) If we don’t “get it” the first time, or even the third time, please just rephrase it another way. If I am stuck on a word, use a similar word. Words like "yep" and "nope" are hard for me unless the head nods or shakes to help me determine which word it is.

Yesterday, we were all going to a nearby family-friendly festival. To be honest, I wasn’t looking forward to it. It was HOT and muggy. The last couple of years, I was bumping into people, even though I was being guided holding hands with one of the kids or Hubby. People just “expect” that you see them and move out of their way. Granted some were conversing with another person and wasn’t looking where they were going and WHAM, a shoulder is whacked or a heel is stepped on. Lately, the bright sun has really been bothersome for me. It hurt my eyes to look in the direction of the sun just to face another person. I would get intense headaches that would take the rest of the day to dissipate. So when I was asked if I wanted to go, I had the opportunity to say that I really didn’t want to go. All people do is walk around getting drunk or stand around chatting with people and getting drunk (okay, maybe not everyone is getting drunk) while the kids played on stuff like rock climbing, bungee something on a trampoline, face-painting, and so forth, all for *free*. There were some competitions going on with people playing volleyball, soccer, softball, etc. Bands were playing in stragetic locations for added entertainment. It was kind of like a fair, but the entertainment was free and there were no stuffed animals for prizes for games.

I was glad I got to say home. A couple of hours later I was really glad; we were expecting stormy weather. The others returned after an hour or two out there. So it was a short trip for the kids.

Onyx really surprised me. She was pacing a lot, but she didn’t really shake so much like she did the last time we had booming thunder. (It takes a really loud CRACK of thunder to make me jump, though.)

Now that Onyx is a year old, Hubby got her new dog food. She ate up all the Puppy Chow. The day after she got her new dog food, she was eating grass and threw up in the living room carpet. (She was acting sick before that happened, too.) The weather was ominous, and I wanted to be back in the house, ready to bolt for the basement.

I was wondering if the new dog food affected her system, but Hubby didn't think so. We were feeding her half a bowl of her new dog food at a time, because she woofed it down in ten bites. She really likes her new dog food.

Hubby rented some DVDs. Hubby set up Spiderman 3’s close captioning with the TV’s. I don’t like the DVD’s closed captioning. Sure, the words are bigger on the screen, but there’s no black background. I see the movements in the background; it’s harder for me to read it. (Remember, I have depth perception problems.) Thanks, Hubby for setting it up that way. Then today I watched Love Actually. Unfortunately, Hubby couldn’t set it up with the TV’s captioning. So I had to deal with dizzying captions. (Hey, Beth, when the part where Hugh Grant did his dance routine came on, I got up quickly to do some serious boogie-ing and guess what? Angel was out on the front porch talking to two of her friends. They could see me through our picture window. Needless to say, I was one “hot” mama-redfaced. LOL!!)

When we had relatives over to visit, I moved the dining table around and put the side up that was lying flat against the dining room window/wall. The way we had it set up, only five people could sit there. This way, with it all out in it’s glory, we were able to seat six people. I started to really like the table like that. It opened up the dining room in a way. I wasn’t looking forward to repositioning it back to it’s original location. Today, Hubby put a leaf out of the table (it has two leaves/sections to make the table longer) and put one end back down, but left it there. Yay. Did he know that I liked it that way or did he just decide that for himself? In any case, I’m happy with it.
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Yesterday, I noticed two things: One, I set the timer because I had something baking in the oven. I took the timer with me so I could always hear it go off. (If I leave it by the stove, I never hear it unless I am in the kitchen.) I had to be told that the timer went off. That’s strange. I usually hear the timer buzz.

Two, I usually can hear Onyx bark. Again, I was told that she barked. Huh? For some reason, yesterday was just not a good “hearing” day for me unless I was just too busy concentrating on my thoughts or the TV.

We had relatives visiting on and off this week. It was great seeing them
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That’s it.

Later.

OXOX

I'm Back

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I had to do some “internal construction.”

I realize I have some history with some of you. I deleted the other blog. I want to stick with one blog now. Sometimes I'll post d/Deaf or Usher related stuff, and sometimes I'll post updates about life in general.

For some updates (note Family Cast in sidebar-screen names):

Flare took communion with me for the first time last Sunday. It was a bit weird (another “growing up” milestone for me), but I was glad, too. I didn’t have to go up there alone anymore.

I didn’t have to worry about bumping into the person in front of me while waiting in line or as we lined up to take communion. (If I bumped into her, she'd understand.)

I let my guard down a little. I relaxed. I didn’t watch for cues the way I always did when I went up there alone. I didn’t watch the pastor too much. BIG MISTAKE.

All of a sudden, I realized Flare was gone. She turned around and walked back to the pews and the others up there with me were staring at me. I hadn’t moved. What an embarrassing moment. I knew that the pastor would understand, but not everyone in the congregation knew I had a hearing problem or even if they did, they didn’t know I had visual problems, too. (Our congregation is large and I honestly don’t know everyone, but the parents of my kids’ classmates and a few of the others that knew my parents.) I kind of moved hastily, trying my best to see where I was going. I must have looked "drunk."

I later told Flare to please nudge me or something the next time we took communion. I also realized that maybe I shouldn’t have “relaxed” and expected Flare to do anything like that anyway. I just feel uncomfortable about “staring” at people for any reason, like their lips or their movements for comprehension or cues. Never “assume.”

We went to a recent graduation ceremony. Hubby’s niece was graduating.

We sat in the bleachers of the gymnasium and it was a bit crowded for me. Both Flare and I had to “angle park.” That is, we have long legs and if we sat the “normal” way, our knees would be poking the person sitting in front of us, so we moved our legs sideways.

I knew I would not like the bleachers anymore. No railings. Steps are different sizes. I have no depth perception. I can’t tell where one step ends the next one begins. If there was something...anything, whether it’s a strip of metal at the edge of each step or some kind of contrast in color, it’d be easier. Oh, well.

The kids at the top of the class went up to the podium to do their speeches. People in the audience were supposed to clap once or twice for some reason. (Don’t ask me what they were.) I couldn’t understand a thing. I mean, I hear the voices, but it’s just “noise.” When people laughed or clapped, it was like, oh, it’s my cue to laugh or clap so I’ll smile or clap a second or two behind the rest.

(Is it me or do high school graduates look like, well, kids? The older I get, the younger they look?)

They also had some sort of a movie showing each student’s baby picture and senior picture with some odd candid shots of some of the kids during the school years or photos of teams in uniform. Flare had a similar movie made for her class, too. I made me wonder how long that was being done. The Information Age really have changed a lot of things.

Smiley moments over the past week:

Angel started her summer vacation wanting to play, play, play. Unfortunately for her (and good for me, wink) most of her playmates are still in school.

Flare attended communion for the first time with me.

Flare went to a classmate’s bonfire on the last day of school. Hubby took her there and picked her up afterwards. Thanks, Hubby, for being the “taxi driver.”

Odd weather: We have been getting a really warm day followed by a steep drop in temperatures the next day. Now it’s supposed to be in the 70s to 80s all week with lots of thunderstorms. Onyx really "digs" the storms. She freezes up, shakes, and "digs" in where ever she is.

Angel got to meet next year’s teacher. The school just hired a new teacher. It was nice that she was able to visit the class before school ended. Angel was pretty pumped.

Angel’s usually hyperactive. Always buzzing. Always on the go. She and a neighborhood kid are friends again. I forgot how fast kids get into fights and “ban” the other from going over to the other's house, then "forgive and forget." Flare was more of a homebody and stayed close to home. She got tired of the backstabbing race quickly. She has the attitude that if they don’t want to talk to her, then she doesn’t want to bother wasting her time on them. (Deep down, I know it's just tough talk or is it? Maybe it's wisdom?)

Flare quickly tells me that she no longer "plays" with kids; she "hangs out" with them. Hangs what? Hee. I get a mental picture of kids hanging in the closet, like clothes. They have their favorites-the often and well-worn, and some they will "wear" every so often. A good analogy, I think.

I went to the gas station and noted that gas is very close to $4 a gallon. I don’t have gas pains; I don’t drive anymore. I may have mobility issues, but not having to fill up my gas tank using money that literally “go up in smoke” makes me feel better.

On the same topic, GM is closing a plant that makes pick up trucks. Hmm, no “economy” trucks?

Onyx is really living the life of a pampered pet. She has her own doggie pillow; she has a lot of use for it. When Hubby first got it a couple of weeks ago, I wasn’t sure how she’d like it. But she’s really “into” it. She’s in it more than any of her other favorite “hot and cold spots” (under the table and where ever the sun shines on the floor).

Congrats to Flare and Niece for graduating. One moving on to the world and one to secondary education.


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That's it for now.

Later.

OXOX