Monthly Archives: April 2013

Career Confusion

I started working the spring/summer after I turned 16, in 1981.  My job search pretty much consisted of scanning the want ads in the paper, a process of elimination more than anything – what could I do where my hearing loss wouldn’t cause a problem?  Right away I tossed out any kind of job with heavy phone work – answering phones at a pizza place, being a receptionist, telemarketing.  Besides needing an amplifier to hear on the phone (and amplified phones were not that common in 1981), I have a phone phobia…something that I know isn’t limited to people with hearing loss, since I know of many people with fine hearing that hate the phone as much as I do.  I also skipped any kind of waitressing job, because I didn’t think I could hear well enough to take accurate orders in a loud restaurant.

My first job was working at Baskin-Robbins, and I found it not through the paper but through one of my brother’s friends who worked there.  He knew they were hiring and gave me the number to call.  My friend called for me; she had a wonderful, relaxed manner on the phone and used to do this for me quite a lot, bless her heart.  Thanks to her I got the job.  (My phone phobia extends even to ads that require a phone inquiry; although I will swallow my fear and do it on occasion, I much prefer walking in to drop off an application or applying online.)

Since 1981, I’ve also worked as a cashier, keypunch operator, floating help in the office of a local school district (data entry, filing, Xeroxing, that kind of thing), file clerk, word processing operator (on a Wang word processor…before computers came along), and administrative assistant to a Human Resources manager.

I got the cashier job because my boyfriend’s mom was the supervisor in charge of cashiers; she just hired me without even really bothering to interview me.  I stayed there for about a year and a half (half a year while I was also working at the school district).

I spent two years doing the keypunch/floating office help thing at the school district; I got that job because my Office Machines teacher recommended me when they called her looking for a student that did well on the keypunch machine.  They actually called me and offered me the job; I didn’t even know it existed!

I worked for 10 years doing the file clerk/word processing job at McMaster-Carr Supply.  I found out about that company through one of the secretaries at the school district, when my job there was coming to an end.  Her daughter worked at McM and she kept telling me I should apply.  I applied and kept calling about my application until I finally got an interview, after a couple months of persistence.

I left McM after Paige was born, and was a stay at home mom for a couple of years.  Then my (now ex) husband and I separated and I needed to find full-time work.  I found the admin assistant job in the paper; that’s when I applied to be a document clerk (no phone!) and the HR manager convinced me to be her assistant instead.  I stayed for five years until they eliminated my position and laid me off in 2001.  That job also solidified my determination to never get a phone-heavy job again; all the phone work traumatized me and left me stressed out and sick all the time.

So basically, I tend to stay on for a long time at my jobs (mostly because I hate job hunting) and I tend to find out about them in weird ways, although I always looked through the paper when I was job hunting.  It’s just that it never really paid off; only one of the jobs I’ve had in my life came from an ad in the paper.

I haven’t really looked for a job since 1996, which was when I found my last job.  After I was laid off, we ended up taking the candle business full time in May 2001 and it took off in a huge way.  That was the best – working from home (although we worked constantly, night and day), no phone work at all, being creative and doing something I enjoyed….all while being here for the kids while they were growing up.

Now that the business has slowed down so drastically, I’ve started looking around again for some very part-time work to make a little extra money.  But I’ve discovered that job hunting the way I used to is a thing of the past.  It’s all online now, and I’m pretty much clueless.

Gone are the days of just scanning everything to see what might be a possibility.  Now you need to focus on a career or specific occupation, unless you want to page through thousands of various jobs all across the country.  For someone like me, with no college degree and no specific occupation, this is really difficult.  I can search for things I know I’ve done in the past, but I’m such a dinosaur that many of those jobs don’t exist anymore.  Nobody seems to hire file clerks or word processing operators, much less keypunch operators.  (ha ha…even if the machines still existed, I wouldn’t know how to use them!)

Keypunch machine...a blast from the past!  I used this in 1982-3.

Keypunch machine…a blast from the past! I used this in 1982-3.

Since I know I want very part time hours, probably no more than 15 per week, the best I can do is use part-time as a keyword search.  Even that is not a lot of help, but at least it’s something.  And now many jobs I know I’m perfectly capable of doing require a degree.  When I first entered the job market, you could easily start low in a company and work your way up with just a high school diploma and a high level of intelligence.  (Hello, thank you, that is me!)

So I scan the ads, reject the idea of most of them (many things, like data entry, require you to also cover for the receptionist like I did at my last job…NEVER AGAIN OHMYGAWD) and keep on looking.  Why can’t it be like it is in the books I read?  In one, this nice lady (who loves to cook) loses her husband to an unexpected heart attack.  A bunch of different single guys on her block then approach her to see if she’ll make them dinner for a weekly fee.  (Come on, really?!)  In another, a lady has a traumatic brain injury and can no longer do her high-powered executive job.  Eventually she learns how to ski using accommodations through an organization that helps disabled people modify equipment, so they can keep skiing and doing recreational activities they enjoy.  And gee, they lose their director and she would be PERFECT for the job!  If only real life worked that way.

Anyway, it’s been interesting, job hunting in 2013.  I don’t have the in-person social network that I did when I was younger, or I would just put out the word and figure I’d get a job that way.  I’ve wracked my brain trying to come up with another home-based business that does not involve selling anything (or buying materials and making things from scratch, like we did with the candles…too expensive in the long run, which is why we tapered the business back).  So far I haven’t come up with anything, but the candle business was never planned — it just kind of happened — and it turned out to be great while it lasted.  Who knows what might come my way this time?

Three Weeks Down

As of today, Dave is in his third week of treatment and so far he is doing really, really well.  He hasn’t had any side effects beyond the ones he noticed right away – the dry eyes/skin, and being tired later in the day as well as the day after he takes his PEG-interferon shot.  (In other words, we don’t plan big activities for Thursdays!)  He was a little disappointed not to have the weight loss side effect; he was joking with me about a week after his treatment started, saying he was probably going to be the only one who gained weight while doing the treatment!  Seriously though, he’s maintaining his weight and eating well.  We never had bad eating habits to begin with (fast food once in a blue moon, otherwise we make all our meals from scratch with very, very little processed food involved).  Now that the weather is warming up we can start taking our daily walks again.  So all in all, this is going much better than we imagined it would!

One of the few photos where Dave is smiling!  At his sister Laurie's house, about 12-13 years ago.

One of the few photos where Dave is smiling! At his sister Laurie’s house, about 12-13 years ago.

The next monkey wrench will be when he adds in the third (and final) medication, Victrelis (boceprevir).  I suspect this medication tends to give people rashes, because the Nurse Practitioner, Mita, mentioned this more than once.  If he adds in the Victrelis and still doesn’t have any bad side effects, we’ll both be very relieved!

We went down to Hines VA hospital on Wednesday for Dave’s first official labs since starting his treatment.  He doesn’t have diabetes, but the medication tends to raise blood sugar so Mita wanted him to fast just for this lab so she could check his fasting blood sugar.  The lab opens at 7 and we live about 45 minutes away (by car) from the hospital.  Dave usually takes his Ribavirin at 6 am, but he has to take it with food (to prevent stomach upset) and that meant he couldn’t take it until after his blood was drawn.  We didn’t want to get his meds too far off schedule, so we headed out early in order to get him in right away for his labs.  That would give us the chance to have breakfast in the hospital cafeteria so Dave could take his meds, and then he had an appointment with Mita at 9 am.

Dave was up around 4 am, and I slept in (!) until 4:50.  Neither of us ate (he was fasting, I was fasting in solidarity with him) and after catching up with things online and getting an eBay order ready to ship, we were out the door a little after 6 am.  We made good time and they took him right in when we got to the lab.  After that we headed over to the cafeteria to get some much-needed coffee and some breakfast.

After we finished eating, Dave handed me the receipt for safekeeping.  I noticed it had a little grid on it, so I took a closer look.  Every item we ordered had the calories listed!  I thought that was really cool, especially if you were an employee that ate at work every day.  It’s so easy to overeat, but if you know ahead of time how many calories you’re consuming, it really helps.  Of course, I didn’t notice this until after we were done eating, but it’s good to know for the future.  I also belatedly realized that the calories were listed next to every item on the sign they had at the station we ordered from.  I didn’t realize that at first; I thought they were numbers you could use to quickly order.  (Kind of like when you go to Burger King and order a #5 or whatever.)  Wouldn’t that have been hilarious if I ordered my food using the calorie counts?!  Luckily I didn’t finish all of my food, and I gave my toast to Dave, or I would’ve ended up eating more calories than him (definitely not something I need to be doing).

Then we proceeded to walk off every single one of those calories…I should’ve worn walking shoes that day!  We spent the next hour and a half walking all over the hospital, exploring.  It is seriously huge!  We even walked past a door ominously marked “Weapon Cleaning Room.”  (!)

Mita had Dave’s test results, all except his viral load count, by the time we arrived for his appointment.  His blood sugar was what it normally is, and his platelets went down a bit but they were still over 100 so they were still at the low end of normal.  His hemoglobin was also lower than his baseline count from last month.  She said if those numbers go down further, they might adjust his Ribavirin dosage.  That also explains why he’s been more tired than usual.  Other than that, his numbers were okay and she didn’t change his meds.  We go back in two weeks, on May 8, for the third and final class and also for his next set of labs (not fasting this time).  He’ll get his next month’s worth of meds and we’ll learn about Victrelis and its side effects.

I guess the viral load number takes a while to process, so Dave is calling on Monday to find out what it is.  Hopefully it will be much lower; this will show that the medicine is working and clearing the Hep C virus.  The goal is for the virus to be cleared by week 8…if that happens, his treatment will go on for another 20 weeks and he’ll be done.  Much better than being in treatment for almost a year!

After the appointment, we headed down to a health fair the VA had going on in their auditorium.  It was very, very loud (as those types of events tend to be) but if you got 15 signatures from various booths, you were entered into a raffle…and Dave was determined to enter!  We had a good time going around and talking to everybody.  Back in the day I would never try to make small talk with so many people in such a loud environment; I would hang back next to Dave and just listen (and smile).

We stopped at a booth dedicated to both colonoscopies and Hep C treatment.  Mita was supposed to be manning the Hep C portion but she was still running her clinic, so we chatted with the colonoscopy fellow.  I snagged a book, Colonoscopy for Dummies, and when we got home I left it in the bathroom for some appropriate bathroom reading.  Dave came out that evening, waving the book at me (he does not ever, ever want to be reminded of his colonoscopy prep, which he claims was worse than going through chemo).  He said, “Why is this in the bathroom??” and without a beat, I said, “Well, it’s the most appropriate place in the house.  You can read it and it will scare the shit out of you.”  It caught him off guard and I must say, we got a long, much-needed laugh out of that!

Live and Learn

When I was in high school, I worked as a cashier at Venture for about a year and a half.  Venture was a store similar to K-Mart, your basic discount department store in the Midwest.  This was back in ’81-’82, and the stores didn’t have scanners – we had to key in three sets of numbers for every item (department, item class and price).  On top of that, the cash registers had no numbers on them, just blank white keys, meant to encourage us not to stare at the register but to look at the item and quickly key in the numbers on the price tag.  (That scared me almost as much as the phone!)  If a customer presented a credit card (and that was rare back then; most people used cash or checks) then we had to drag out the knuckle-buster and a credit slip, write all the information down, and call the charge in if it was over $50 (my biggest nightmare).VentureSign

I got really good at the cash register part, and I was quick and efficient, moving my line along at a brisk pace.  I usually had no problem understanding people, between my speech reading skills and my hearing aid.  Back then, I had a moderate-severe loss in my left ear, and a severe-profound loss in my right ear; I wore one hearing aid, in my right ear.  The biggest issue I really had was with the phone, which had no amplifier.

If I had to call in a charge, I never knew if I would be able to understand the person on the other end.  Many times I had no idea what they were saying, but I got used to the questions they would ask so I would throw that information out there and hope it was what they needed.  At least half the time I couldn’t hear the confirmation number they gave back to me; I’d just write down a bunch of numbers on the slip that sounded close to the noises I was hearing on the phone.

As a side note, I always looked for jobs that involved little to no phone use (I still do that even today).  When I chose a cashier job, it never occurred to me that there would be a phone involved.  I figured I couldn’t ask for a special phone and never bothered to even mention my difficulties to my boss.    Although I kind of enjoyed the cashier aspect of the job, I would probably never go back to another cashier job because of the phones (and now those walkie-talkie things that everyone seems to use – those are a million times worse than the phone for me).  Kind of a bummer because I’m looking for something very part time, just to bring in some extra money now that the business is slow, and it is hard to find something that doesn’t involve a lot of phone use with the skills I have (mostly office work).  Between my phone phobia and my difficulties on the phone, I have no interest in using the phone at work – it stresses me out way, way too much.  I can get by with a captioned phone, but I still would not want a job that had me using the phone very frequently.  It’s going to be a long job search!

Getting back to my job at Venture…one day a lady came in, and I can’t remember now if she was alone or with somebody else, but I think she was alone.  She told me she was deaf.  And that’s all she said:  “I’m deaf.”  It froze me completely.  I was terrified!  I didn’t know sign language, didn’t know anything about deaf people or how to communicate with them.  For all I know, she might have been able to hear a little bit; in my mind, ‘deaf’ meant completely devoid of hearing, no sound getting through at all.

I just smiled and nodded, didn’t say anything, and rang her purchases up.  The whole time, I was slightly panicked, wondering how I was going to tell her the total of her purchases.  I had no idea if she could lip read, I had no idea how to communicate with her at all.  I believe she moved around so she could see the total on the cash register, then she paid and that was that.  But all these years later, I still remember how freaked out I was to have someone tell me they were deaf…even though I also had a hearing loss!

Now that I’m deaf myself (and hearing with CIs), that always stays in the back of my mind if I identify myself as deaf to somebody.  I never, ever just say, “I’m deaf” and leave it at that.  I follow up with, “I read lips and I have cochlear implants.”  Depending on the situation, I might also let them know that I’ll say something if I’m having trouble hearing.  Usually I just like to throw it out there if the situation warrants it, so they don’t think I’m either rude/ditzy/clueless/stupid if I don’t respond appropriately.  I always say that I’m deaf, though, because I am and also because it seems to catch people’s attention more than “I have a hearing loss.”  People tend to be more careful about looking at me when they know I’m reading their lips; if I just say that I have a hearing loss, most of the time they talk with their head turned and/or talk too quietly or too fast.

Hopefully I’ve never elicited the same amount of fear in somebody that I had that day I met my first deaf person.  Part of it was my young age and inexperience; part of it was her lack of information.  Although she didn’t have to tell me anything else, it would have helped to know how to communicate with her since it wasn’t something I had any experience in.  Live and learn!

Kidney Stones and Starters and Ultimatums, Oh My!

Dave and I were watching The Carrie Diaries a week or so ago, and in that episode Carrie told her boyfriend Sebastian that she wanted to break up.  So they did.  Later on, she’s telling her friend about it and is shocked that he didn’t fight for her – he just agreed when she suggested they break up.  I was nodding in agreement with her as she said this, while Dave scoffed in disgust.  I turned to him and paused the show.

“You know, that really is how many girls think.”

He looked stunned, and I continued.  “The guy is supposed to know she doesn’t really mean it.  It’s just like a test for him – will he fight for her and their relationship?  Or will he just agree, which means he didn’t care enough.”

Dave disagreed, vehemently.  “NO.  If she says she wants to break up, she should mean it.  Why would he stay with her if she wants to break up?!”

I narrowed my eyes and challenged him.  “So if we got in a fight over something stupid, and in the heat of the moment I yelled and said I wanted a divorce, you would just DO IT?  You wouldn’t fight for us?”

He shrugged.  “Yeah.  If tell me you want a divorce, then I assume you really want a divorce.  Don’t say it if you don’t mean it.”

I shook my head.  “No, you should know I don’t really mean it and that people say things they don’t mean when they’re angry.  If you told me you wanted a divorce, I would never just accept it.  I would do everything I could to keep our marriage together!”

The show languished on ‘pause’ as we continued, although at this point we were kind of laughing at each other for getting so worked up.  Finally, I smacked Dave on the arm and told him he’s not allowed to ever agree if I tell him I want a divorce.  He grinned and acquiesced.  Luckily, I have long since outgrown my tendency to throw down huge ultimatums in the middle of a fight and, also luckily, we usually don’t fight.  We might have heated discussions, or disagree for a while before coming to a compromise, but it is very, very rare for us to have an actual yelling-at-each-other fight.  Still, it’s good to know that he’s so very literal!

In other news, last night I was playing Words With Friends when I heard Dave call out, “Honey?  Come here!” from the bathroom.  I ran down the hall, hoping he was going to deliver the news I wanted to hear.  He proudly wielded his strainer, which held…a dark gray kidney stone, much MUCH larger than I expected it to be.  I mean, I thought we might actually miss the thing, you know?  This looked like he’d plucked a piece of gravel from the road and tossed it in the strainer just to mess with me.

You know it’s true love when you’re high-fiving your husband and admiring the kidney stone he just passed at 11 pm.

It’s a good thing he passed it on his own, because when he called to make the appointment with Urology they told him the soonest they could get him in was May 20th!  Lord have mercy.

He kind of sighed this morning and told me, “I feel like I’ve been cheated.  I’ll never really know what the first week of Hep C treatment is supposed to be like…the kidney stone stole the spotlight!”

In one week he has not only started his Hep C treatment, passed a kidney stone and finished my mom’s kitchen (it looks great, mom!) but now our car won’t start [heavy sigh].  We assumed the battery ran down because when we got in the car the morning after his hospital visit, it wouldn’t start.  I figured maybe we didn’t shut one of the doors all the way, since it was so late and we were both really tired.  Dave put the battery charger on and we took our other car over to my mom’s.

But yesterday morning, when he was heading over there to finish up, it still wouldn’t start.  So he spent the morning taking the car apart, trying to figure out what was going on.  I suggested that we have it towed and looked at in a shop.  He looked as if I had just suggested we remove our clothing and do an interpretive dance on the sidewalk.  “No, of course I can fix it.  It just takes so damn long to actually get to the starter on these newer cars!”  He complained about clamps that needed to be removed and I nodded supportively.  I asked if he needed my help.  He made a little snort of laughter and went back to the garage, and I breathed a sigh of relief because, really, I know nothing about cars.

So now we have a new starter ordered and he’s going to pick it up in about a half hour.  After this, it would be helpful if we could get a little break on the crises.  *fingers crossed*

And the (Medical) Hits Just Keep on Coming!

Remember how I said Dave had the same abdominal pain that I did earlier this week?  And I thought maybe we had something viral?  Well, it turns out Dave’s pain was an entirely different animal!

He woke up feeling fine on Saturday morning and went over to my mom’s to continue painting – when I woke up, I just found a happy note from him (“Good morning, sunshine!”) letting me know where he was and that he’d be back by 10 am.

He came back and I could tell something was wrong, but I couldn’t tell if it was maybe some catastrophe that happened at my mom’s, or if he was having some side effects from the Hep C treatment or what.  He told me that the pain had come back, and he thought it was some terrible gas attack.  He stretched out on the floor and said that lying flat made it feel a lot better, so we assumed he was dealing with my Weird Stomach Troubles.

As the afternoon progressed, he said he was pretty sure it was something else – he could feel really bad pain when he urinated, and it was more in the back on his left side (my pain was more in front, like the pelvic area, and not the back).  We checked the possible side effects from his Hep C treatment, but nothing was mentioned about pain like this…nausea and loss of appetite, yes, but not severe pain.

Of course we got online and started researching, and then kidney stones seemed like a real possibility.  After he read some horror stories about guys having instruments inserted into their ‘delicate personal area’ to extract the stone, he decided he would ride it out at home until he passed it on his own.  So he started guzzling water and riding out the pain, assuring me that he could handle it and there was no way that he needed to go to the ER.  Since he’s as stubborn as me, I didn’t push him on it…I just told him to let me know if he changed his mind.

Around 7:30, we were watching TV and I could tell he wasn’t even paying attention to the show; he was closing his eyes and grimacing in pain.  I asked again if he wanted to go to the ER; first he said that maybe he’d go in the morning, if it wasn’t better.  About 10 minutes later, he finally decided he’d rather go NOW, thank you very much.  So we headed out around 7:45, after making sure we had his Hep C information.  I briefly thought about bringing his morning meds in case he was admitted, but I decided against it.  I also confirmed I had backup CI batteries in my purse, since they usually run down in the late evening.

We got to the VA hospital (about a 30 minute drive since there wasn’t much traffic) and the waiting room was empty.  Dave walked up to check in and the lady at the desk said, “Oh my, you look like you’re in a LOT of pain.”  That was putting it mildly!  By this time he was walking like an old man, hunched over and shuffling.  The intake nurse called him back pretty quickly; I made sure to go with since he was having trouble hearing and really kind of out of it from the pain.  His blood pressure was 150/90, which is by far the highest I’ve ever seen it – Dave always has perfect (enviable) blood pressure.   I noticed that the nurse repeated everything back to him when he was finished, to confirm his symptoms, and I was impressed – I had never seen them do that before.  I assumed it was because he was hard of hearing.  I did notice that the VA seems to deal with hearing impairment better than other hospitals I’ve been in, possibly because they see it more with veterans than with the general population.

We went back out to wait for about five minutes before being called back to a room.  Then we sat, and sat, and sat some more.  A nurse came in and collected Dave’s urine sample and said the doctor would be in soon.  I would say it was close to 9:30 or 9:45 before he came in.  I was starting to get a little pissed; I mean, Dave was in so much pain and it felt like we were being ignored even though the ER seemed to be pretty empty.

Finally though, things started moving along and we ended up being really pleased with how the whole visit was handled.  He was seen by the doctor, then the nurse came back to draw blood and right after that they took him for a CT scan.  I expected that to take forever; I remember checking my watch and it was 10:08, so I figured he might be back around 11:30.  He came wheeling back in at 10:22!  Then we waited again, for a long time.  After about 30 or 45 minutes, the nurse came back and gave Dave some morphine.  FINALLY.  At that point, he was so much better – it really took away his pain and made him more lucid.

We were chatting away and boom, my right CI battery died.  I grabbed my purse, slipped on a replacement battery and…nothing.  The battery was dead.  So I put the other replacement battery on, and same thing – dead.  I couldn’t believe it!  It’s been a long time since I used the batteries in my purse and I never dreamed they would just go dead without using them, but I guess that’s what happened.  So there I was with only one functional ‘ear’ at about 11:15.  I checked my left CI and I saw two flashes when I slipped the battery on and off.  Four flashes means the battery is fully charged, so this one was at least halfway gone, possibly more.  I decided to just take it off and go au naturel, since I can understand Dave fine when I can’t hear.  I wanted to save my hearing for when the doctor came to talk to us, and also in case I had to drive home alone (if Dave was admitted) so that I could hear the GPS.

This was another loooong period of waiting, while they waited for someone to read the CT scan.  Since Dave was able to talk and no longer in horrible pain, we spent a lot of time chatting and practicing sign language.  He was teaching me – I still need lots of practice!  At one point they came in and took him for an X-ray; that went just as quickly as the CT scan.  Finally, the doctor came back and confirmed that Dave had a 2mm kidney stone.  They were giving him three medications (pain meds, antibiotic and Flomax to help his muscles relax) as well as a strainer so he can (hopefully) catch the stone.  They told him to call Urology on Monday and tell them he needs an appointment.  He is really, really hoping he will pass the stone on his own before the appointment!!

It was pretty funny – the doctor was talking to him about using the strainer when he urinated and Dave said, “Oh no, I don’t strain when I pee.”  And I could see this look of amusement pass over the doctor’s face – he was standing on Dave’s deaf side (as was everyone that walked into the room, since they entered on his left, which is deaf) and he finally realized Dave was misunderstanding him.  But I thought it was a pretty easy thing to misunderstand – we cracked up over that later on!

The doctor left and Dave went off to go the bathroom (his seventh time since we entered the ER).  The original nurse had left for the evening, and the intake nurse had taken over for her.  While Dave was gone, she came in the room, kind of excited, and asked if we knew sign language.  I showed her the CI I was holding, told her I was deaf and my batteries were dying so I was preserving them, and put the CI on to talk to her.  She pulled her hair back and said, “I have CIs too!  Two of them!”  It was so awesome!  I realized that was probably the reason she repeated everything back to us during intake – to make sure she heard it correctly.  She knew sign language well, and explained that she had seen us signing earlier.  I told her that Dave was teaching me, since I just lost all of my hearing five years ago and didn’t know many signs.  Then I told her that we actually met online through a hearing loss support group, the SayWhat Club.  Her eyes lit up and she said she’d been looking for something like that; she had been a member of ALDA many years back.  We were having a great time, talking about SHHH and ALDA, and I recommended SWC, HLAA and the Illinois Cochlear Implant Chapter to her.  Dave came back and joined in the conversation; it was just a really nice surprise and an upbeat way to end the evening.

We went off to wait at the pharmacy for his medications, and finally headed back home a little after 1 am.  We got home between 1 and 1:45, fed our outdoor kitty (Goldie) who was waiting impatiently on the deck for her midnight snack, and collapsed into bed a little after 2 am.  We’re usually in bed by 11 pm so it was weird to be up that late and not even tired!

Dave is making pie crust while I type, and his pain meds are doing the job.  Hopefully this medical crisis will resolve itself quickly for him and we can get back to focusing on one medical treatment at a time!

Slaying the Hep C Dragon

I think it’s time for a medical update (now that we actually have some progress).  I took a little unexpected hiatus from writing this past week while I dealt with what I call my ‘weird stomach thing.’  It started happening after I had a miserable month of salmonella poisoning from eating infected eggs that we got from Costco, back in the summer of 2010.  I wasn’t sure WHAT was going on with me at first; I was on this fish oil cholesterol medicine called Lovaza and I assumed I was having issues because of that.  I stopped taking it, still had the issues…they slowly started getting better after about 3-1/2 weeks, and then about two weeks later we got a letter from Costco, helpfully telling us that the eggs we purchased were tainted with salmonella, and we could return them for a refund if we wanted to.  (We had already consumed them, DUH – we bought them a month and a half before they sent the letter!  After this, and also getting two similar letters regarding infected ground beef about 2-3 months after we had already eaten it, we stopped buying meat and eggs from Costco.  Gross.)

So anyway!  I realized that was why I stayed so sick – eating those damn eggs for nearly a month – and hoo boy, it was miserable.  I couldn’t really leave the house, since I never knew when I might need to break and run to the bathroom…especially if I had just eaten a meal.  Not that I could really eat – it caused so much pain, I was just entirely debilitated.  Great way to kick off the summer – I was sick from the end of June pretty much through the whole month of July.  After that, my stomach seemed much more sensitive and now I get my Weird Stomach Troubles usually 2 or 3 times a year.  That’s what I just finished dealing with and UGH, I hate it.

The last couple of times it’s happened, Dave has also had the same issues (and Paige as well – she was home when I came down with this before) so I’m not sure if it’s some kind of virus thing or what.  It lasts anywhere from 3-6 days, and basically causes massive pain, especially after eating.  I’m talking ‘lean against the counter and breathe through the pain like it’s a labor contraction’ kind of pain.  I won’t get too graphic, but the symptoms sound like gastroenteritis (and may well be, who knows) except for the fact that, um, nothing really happens in the bathroom, if you catch my drift.  So in that sense, it sounds like a diverticulitis flare-up, which…hey, I’m over 40 and most people actually have diverticulitis and don’t even realize it, so maybe it’s that.  Who knows.  All I know is that it’s awful, I become completely unproductive because the only thing that doesn’t hurt is to lie flat or stand up (sitting is the worst), and all I can think of is how much discomfort I’m in.  I also can’t leave the house because what if I need the bathroom?!  I added to my general misery this time around by imagining how I would deal with this if I had to go to work outside the home…NO WAY.  I would have to take a minimum of four days off…can you imagine?!  They would fire my ass so fast!

Dave is always offering to take me to the doctor and I always hiss back, “NO.  I will never, ever go to the doctor for stomach issues because I refuse to have any of those tests done.”  When I was 12, I had chronic stomachaches and I had to be admitted to the hospital for a bunch of horrific tests, all of which involved multiple enemas beforehand.   The worst of them was a lower GI, where they gave me a barium enema and made me hold it while they took x-rays.  I was 12, and it was a young guy technician who did the enema, which mortified me beyond reason.  I was so tense and in so much pain, by the time they told me I could go to the bathroom I just went into the room, closed the door and collapsed on the floor in pain.  Finally everyone started banging on the door, asking if I was okay, when all I wanted to do was stay in that bathroom for another hour or two.  UGH.  Never, ever again.  (By the way, the tests just revealed that I had an irritated stomach lining; the doctor prescribed Valium so I would Chill Out…and it worked.  My stomach still gets upset when I’m stressed out.)  So I have this irrational fear of going to the doctor for this stuff.  I won’t have the tests done; I told Dave I’d rather deal with the symptoms than the pain from the tests.  And it always goes away.  It just sucks while it lasts.

So while I was deep breathing and waiting for my stomach to stop being an asshole, Dave was gearing up for the start of his Hepatitis C treatment.  I started feeling better and then Dave got sick with the same symptoms I had.  (Oh!  What seemed to really help was peppermint oil – Dave actually went around to a bunch of stores to find it for me.  It’s called Pepogest, and once I started taking it I instantly felt better.)  He had a 9 am appointment on April 10 and that was just a day or so away.  Luckily he beat the symptoms back with Pepogest and his magic bullet, drinking vinegar.  Can you imagine?!  I hate the smell of vinegar, so I can’t even imagine drinking it (although he mixes it with juice…it’s still gross, though).   Luckily by yesterday morning, we were both feeling like our normal selves as we headed out to the VA hospital.

Of course, we were driving in the middle of a massive thunderstorm (which I loved).   It seems like every time Dave has an appointment for anything liver-related, we have some major weather event.  It started with his liver biopsy in 2011 (we had a blizzard – it shut the hospital down and the biopsy had to be rescheduled).  And this year, every time he’s had an appointment it managed to snow enough to where we weren’t sure we’d get down there in time (luckily we did).  I told him that when we go back next month, there will probably be a tornado to contend with!

We were once again part of a very small group: just us, the couple from the first class we went to, and another single guy (but not the same guy from the first class).  Everyone there was Genotype 1a, getting the same treatment:  PEG-interferon shots once a week, Ribavirin capsules (3 caps twice a day), and then Victrelis (boceprevir) starting about a month from now.  We were in the class for almost three hours and let me tell you, it was awesome.  The nurse practitioner who was in charge, Mita, was worried it was too much information and didn’t want to confuse people, but it was really fantastic to get to sit and ask questions and just learn all about these major medicines that Dave was going to be taking and how to deal with any side effects that come up.

There was extensive discussion on each possible side effect and how to deal with it.  I took pages of notes and asked lots of questions.  I liked having a small group because we were in a very small room that was quiet and really easy to hear in.  I could understand the video that she showed us, even though it wasn’t captioned, because the narrator stayed on the screen and I could read her lips and hear well enough in the small quiet room.  (The video was on how to give yourself the interferon shots.)  As scary as this treatment is, I feel like Dave is in good hands and I just feel really comfortable knowing he has someone so closely monitoring everything, someone we can turn to whenever we have questions.  We never felt rushed, and we left there feeling really confident.

The guys all gave themselves their first shot while Mita was there to help and give them pointers to make it easier.  Dave said it hurt, but nothing he can’t deal with.  Actually, before the class started she pulled him aside and said he didn’t have immunity to Hepatitis A or B, so she was giving him a series of shots for that.  He got a combined Hep A & B shot before the class started, and later in the day he mentioned more than once how much his arm hurt.  That was definitely his biggest complaint about the whole process!  He has to go back for two more vaccinations to complete the series, and he’s already grumbling about it.

He takes three Ribavirin capsules twice a day, 12 hours apart (he decided on 6 am and 6 pm).  He took his first three last night, right after dinner.  He’s taken another three this morning.  He only does the Pegasys injection once a week, so he’ll do that again next Wednesday before bed.  So far he hasn’t had any big issues come up.  He said, “I can tell something’s going on, but that’s about it.”

He did say that when he got up around 4 am, he could barely open his eyes because they were so dry.  He doesn’t make tears – it’s either from the leukemia or the chemo, I can never remember which – so he always has to use eye drops to keep his eyes moist.  This is above and beyond, though.  Mita did specifically say that the treatment ‘dries you up’ – she was referring to possible kidney issues, and all the guys were instructed to drink at least 2-1/4 liters of fluid a day (not caffeine, such as coffee or pop).  Dave was really good about that but it still really dried his eyes up, so we’re heading out to buy him some heavy-duty eye drops later this afternoon.

The only other thing he’s noticed so far is that he’s been cold, which is unusual for him.  He thinks it’s from all the extra water he’s drinking.  Usually he’ll go out in 30 degree weather with a t-shirt on; if I ask if I need a jacket he’ll tell me ‘no.’  Then I step outside, shriek, and come back in to find my winter coat.  So it’s a little weird to see him walking around the house with thermal underwear on under his t-shirt!

I did have to sternly tell him that he needs to tell me how he’s feeling and not try to spare me/hide it from me (which he does tend to do).  I mean, if he falls out or something and I call Mita to let her know, it won’t be helpful if all I can say is, “Well, he keeps telling me he feels fine!”  So I told him to let me know what’s going on, I’m not going to freak out or anything – I just need to stay informed so I can be there for him if he needs me.

The way the VA program works, the meds are given in person.  So he has enough for four weeks, which takes him to the point where he has the third class.  That’s when they introduce the third medicine, Victrelis, which is also a pill and has its own array of side effects (hence the class, to learn about how to deal with them).  If he doesn’t show up for the class, he doesn’t get his meds.  I think it’s a good process, personally.

His next appointment is in two weeks, April 24, when he gets his first labs drawn.  This is an important blood test – it’ll show how his body is handling the medicine, whether it’s raising his blood sugar, affecting his thyroid or his white blood cell count, and most importantly, whether it’s killing the Hep C virus.  I guess some patients actually clear the virus by this two week point!  Depending on how he’s responding, they’ll decide how long the treatment continues.  I believe it doesn’t go any longer than 28 weeks, which is half the time treatment used to take.  If it’s not working, they’ll stop treatment and he will just wait until new meds come along.  So even if he clears the virus in two weeks, he’ll still finish the full treatment.  Then they test again six months after the treatment is completely done, to see if the virus has come back.  If not, he gets to hear the magic word:  CURED.

It’s early on in the treatment, so I’ll keep updating as it progresses and we see how it affects him.  Right now, though, he has a really positive, upbeat attitude.  He’s actually off at my mom’s house right now, painting her kitchen!  I’m going to see if I can get him to let me help tomorrow…usually he claims there’s not enough room for two people to paint (he even tried saying that when we painted the family room downstairs, which is HUGE!) but maybe he’ll relent and let me slap some paint on the walls.  I kind of like that he’s still feeling feisty…let’s hope it stays this way!

Go, Dave!!  :) (Paige, Dave & Wendi at the 2010 HLAA convention)

Go, Dave!! 🙂
(Paige, Dave & Wendi at the 2010 HLAA convention)

I Miss You

Yesterday Dave was making a sandwich, and he had pickles on the side.  He knows I hate pickles with a passion; if we’re at a restaurant and they serve me a sandwich with a pickle on the plate, I give it to him (and wipe my plate to get rid of the gross pickle juice that taints everything).  He waved the jar at me with a mischievous grin.  “Want a pickle??”

“Ew!!  No!!”  Then I started laughing.  “You remind me of my dad – he used to love to tease me with foods he knew I hated.”

When I was a kid, my dad derived great pleasure from passing me the spinach or broccoli, waggling his eyebrows and asked if I wanted a big helping.  He always knew what my answer would be…he just liked to see my dramatic reaction.

I remember him singing ‘Cool Water’… “All day I face the barren waste without the taste of water – cool water.”  (I don’t remember much beyond that line, though!)  I used to have a cassette recording of him singing the song with me, when I was probably five years old or so.  He loved making cassette tapes with us on the stereo, my brother and I.  He’d plug in the microphone and interview us, sometimes asking what we wanted for Christmas, sometimes asking us to recount tales of our little-kid escapades.  We’d watch the needle on the signal meter on the stereo receiver, sometimes deliberately blowing or coughing into the microphone just to see the needle swing wildly.  Then we’d start giggling, while my dad waited patiently for us to compose ourselves.

‘Patient’ is definitely a word I’d use to describe him.  He could get heated and yell at us, sure, but he really was not one to lose his temper all that much.  He would help me with my homework, take me fishing, bring me down to his workshop and show me how to use the tools – nails, saws, sandpaper.  He helped me with the little projects I came up with – a wooden key ring holder that looked like a house, the bed I designed for my room when I was a preteen (I designed and painted, he built).  I’d hang out with him in the garage while he worked on the lawn mower, and we’d walk around the yard, looking for new bird nests.  (We always had a few in the spot where the downspouts met the house, up by the roof.)

I can still picture him singing along to the Beatles, the Rolling Stones, the Who.  I can still see him in those groovy patterned shirts from the 70s, downstairs, dancing with my mom to the music on the stereo.

Mom & Dad, looking groovy!

Mom & Dad, looking groovy!

When I was a teenager we grew apart; the things I thought were funny as a kid just annoyed me as a teen.  We fought more and I pulled away.  But after a few years of that, I realized my dad was a pretty rational guy.  If I was asking for permission to go somewhere or do something, I had a better chance of him saying yes if I sat down and talked to him about it, instead of fighting and yelling.  He was willing to compromise, and although he didn’t always okay everything (and we still fought) there was a definite thawing of my previous frosty attitude toward him.

Daddy

My dad was an amazing Papa to my kids.  Paige didn’t get to know him as much as Eric did, but oh…Eric and my dad were such a team.  They completely loved and were crazy about each other.  My dad had infinite patience with Eric; he would sit and play cars or Legos or Transformers or action figures with him for hours.  They would fly kites in the backyard; my dad would take Eric to the store and then come back and marvel at the things he could read when he was just a toddler.

My dad and Eric, all smiles :-)

My dad and Eric, all smiles 🙂

When I was a single mom, my dad still watched over me – he took my car in for oil changes and made sure it was running well.  When Paige locked herself in the bathroom and I couldn’t figure out what to do, he came over and showed me how to get the door open.  It was stressful and scary being on my own with two little kids, but knowing he was there if I needed him helped me relax and get through the days.

When we found out my dad was sick, that the cough and fatigue was lung cancer and not a stubborn case of bronchitis, it was almost too much to process.  I couldn’t imagine a world without my dad in it, and so I just refused to believe that he wouldn’t beat this disease.  And less than two years later, even though we knew he was so sick, it was still a shock to me when I got to the hospital and found out he had passed away while I was stuck in traffic.  I thought I was going there for a meeting with the doctors and family to plan the next stage of his care; I never, in a million years, expected to walk in and find out he was no longer with us.

It will be 13 years tomorrow, and I still miss my dad every day.  I still talk to him and feel like he’s watching over all of us.  Whenever something big happens, I think about the fact that he isn’t here to see it (sometimes that’s a good thing, like 9/11 or me going deaf; sometimes it’s a bad thing, like when each of my brother’s three wonderful children were born).  How lucky I was, though, to have him for my dad.  How lucky we all were to have him in our lives, even if the time was too short.

Paige, me, Eric, my mom and my dad - late 1999

Paige, me, Eric, my mom and my dad – late 1999

From Scratch

“Did you know you can roast green coffee beans in a popcorn popper?!”  It’s summer 2006 and Dave is reading a Squidoo Lens (webpage) that talks about using a hot air popper to roast green coffee.  I grin at him, figuring this will be a short-lived interest that’s probably not worth the time it’s going to take.  But what the heck, right?  Let’s give it a try.

To be honest, I never thought about the fact that coffee comes off the plant in a state other than the roasted brown beans we were buying in the store.  I mean, we love coffee and we would spend extra to get beans we thought tasted better, but I never did a lot of research into coffee, the various roasts and ways to prepare it.  I just drank it and enjoyed it and went about my day.

The West Bend Poppery II was recommended as a type of air popcorn popper that would work (the hot air needs to come in from side vents).  We set out to scour our local thrift stores and found one fairly quickly.  We bought the green (unroasted) coffee beans from an online store recommended in the Lens, Sweet Maria’s.  (We still buy from them; their beans and customer service are exemplary!)  Dave did all the research, although I did some light reading myself just so I would know what the heck he was doing.

We found out that you can vary the roast from light to dark, and bring out different qualities in the coffee bean that way.  You have to listen for a popping/cracking sound as the beans roast (there’s ‘first crack’ when they first start to turn brown, and ‘second crack’ which obviously comes later).  Sweet Maria’s is really informative; they let you know what type of roast works best with the beans you’re buying, and what different notes will be brought out in the flavor of the coffee.

You can’t get too fancy with an unaltered popcorn popper, as far as regulating temperature and such, but it really does work!  We would go outside on the deck and crouch next to the popper, listening as hard as we could for the cracking sound.  (Not an easy task for two hearing impaired people, listening over the loud noise the popcorn popper made as the beans whirled around inside.)  But we figured it out, and Dave finessed it, learning to tell by color and smell, as well as the cracking sounds, when the coffee was done to the point that we liked it.

I was very wrong, by the way.  He never gave up his interest in roasting his own coffee beans, and for his birthday at the end of October that year, I got him a very basic coffee roaster as a gift.  He got an upgrade the following year.  Since then, he’s made his own huge roaster with a rotisserie oven that we found at a thrift store; he modified it, added a second heat source, and now he can roast a much larger amount of coffee at one time.

He also started playing around with methods of making coffee.  We had a Bunn that brewed into a thermal carafe, and that was our favorite coffee brewer at the time.  After playing with a few things (Chemex pour-over, French press, moka pot and vacuum pot) we decided we liked the flavor from the vacuum pot the best.  It was cool to watch (our original one was a glass Cory so we could watch the action) – you put the water in the bottom pot and heat it up, add the ground coffee to the top section, and when it reaches the right temperature vapor pressure causes the water to get sucked up into the top.  (The top chamber maintains the temperature at 190 degrees.)  You let the water and coffee mix together on top for about four minutes, then turn down the heat and the water gets sucked back down into the bottom.  There’s a filter that prevents the grounds from being sucked back down, so your bottom pot has your delicious coffee.  It makes a really clean, smooth cup of coffee – I like it better than a French press, which lets more sediment through.

Some of the coffee brewers we've collected...mainly vacuum pots but you can see the Chemex too (with the wood collar)

Some of the coffee brewers we’ve collected…mainly vacuum pots but you can see the Chemex too (with the wood collar)

This was another thing I didn’t think we’d keep doing – it’s a little more work than a coffee brewer, after all – but here it is, 2013, and this is the only way we make our coffee.  We even bring the vac pot with us if we’re going on vacation – we have a stainless steel Nicro that we use every day, on the gas stove, and an electric Sunbeam that we can bring with and use anywhere there’s an electrical outlet.

It also saves us money (green beans are cheaper than the roasted ones in the store) and since we roast on an as-needed basis, the coffee is always fresh.  I have to confess, if Dave didn’t do this I would be a little lost since I no longer participate in the roasting process, but I’m happy to reap the rewards for as long as he’s interested in roasting our own coffee!

The coffee thing kicked off a little ‘what else can we do from scratch?’ thing with us, and I have to tell you, we get such a kick out of it.  It suits our personalities and it’s something we enjoy doing together.  Actually, the one thing I remember Dave doing, even before the coffee roasting, was making homemade applesauce.  This was another thing I just never even dreamed of making – to me, applesauce came from a jar you bought at the store.  I was intrigued when Dave said he was going to make applesauce from the apples we’d picked in Michigan.  I love applesauce, but I found out that day that I’d never really tasted applesauce the way it could be.  And the kids.  The kids were absolutely gobsmacked the first time they tasted Dave’s applesauce.  Even now, they get excited when they find out he’s planning to make it – it is so freaking good, and not hard to do.

Over the years, we’ve had lots of fun figuring out which things and worth it to make from scratch.  We always make our own bread, biscuits, pie crust and pizza dough, and recently we added English muffins to that list.  (I wasn’t sure they’d be worth the extra time, but they really are!)  We render our own leaf lard, and that gets used in place of shortening (as gross as it sounds, it’s better for you and it makes amazing pie crusts).  I always make my own granola.  Dave makes his own hot pepper sauce.  I’ve made cream cheese – it wasn’t a total success, but it was decent and now I’m interested in trying it again and branching out into some other cheeses from scratch (ricotta, mozzarella).

I’ve made my own lotions, flax seed gel for my hair, and whipped shea butter.  It’s easy to make your own ground sausage — either Italian or breakfast (for the rare, wonderful times we make biscuits and gravy).  And then there’s the things like gravy (spaghetti sauce) and barbeque sauce that we make in batches and freeze.  We’ve got a big garden planned for this summer, so we can keep canning tomatoes and grow more herbs.  (They are so expensive from the store!  There’s nothing like going out to clip a few basil leaves and parsley for your own gravy.)

We do make our own pasta, but that’s not something we always make from scratch.  I think it’s really time-consuming, and it’s best if you’re making linguine or fettucine.  Most of the time, though, I use a tube-shaped pasta or farfalle or gemelli, so I do buy dried pasta instead.  But we love the flavor of homemade pasta, and it cooks in a snap, so it’s something we make every now and then.   We’ve also tried homemade tortellini and ravioli; again, a little more work than I want to do on a regular basis.  But it’s nice to know that if I wanted to make a pasta dish and didn’t have any on hand, I could make some from scratch.

I think that’s the nicest thing about this…it puts so many possibilities at your fingertips.  Here’s to homemade!

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