So, what now?

As I sit and stare out the window trying to absorb the peace of the wind in the trees I have to ask myself, 'So, what now?'

It’s a question people with chronic health issues say and hear frequently. Sadly the response to this question is, more often than not, I don’t know. When a joint that had previously been relatively stable suddenly dislocates, ‘now what?’ Or when a new issue occurs and we have to ask our doctors ‘now what?’ It can be extremely frustrating for us and for our doctors.

Two weeks ago I had a fairly significant ‘now what’ that has, once again, become a game changer. If I had a dollar for every time I’ve heard ‘this is your new normal, get used to it’, I’d be debt free. Seriously. Like dysphagia and learning how to eat using the ‘gravity fall’ method just to get food to my stomach and malabsorption of the food once it gets there.

National Foundation of Swallowing Problems

Malabsorption Syndrome

The malabsorption has led to me having to have an IV bag full of vitamins just to make up the difference. At first I had to go in for the IV every other week, then just every month. It hasn’t been as bad since we started juicing, apparently juicing fruits and vegetables breaks them down to a state where my intestines do a better job than just eating them straight up. You would be surprised how difficult it is to get that IV. Doctors just don’t believe it is anything useful. In my experience, it’s very useful. I wish I could still get them! The doctor I was seeing retired and his replacement thought vitamin therapy was a crock. Gee, thanks! Working with my new doctor to see if I can get them again.

I can’t help but wonder if the lack of those vitamin treatments led to recent events.  I had what is called a ‘Thyroid Storm’. My thyroid is tested periodically because of my forced inactivity due to EDS. It was checked three months ago and was fine. Then one day it was no longer okay, the reason took a while to uncover.

“Excerpt from Mayo Clinic regarding Thyroid issues.

Thyroid storm.

The sudden and drastic increase in thyroid hormones can produce a number of effects, including fever, profuse sweating, vomiting, diarrhea, delirium, severe weakness, seizures, markedly irregular heartbeat, yellow skin and eyes (jaundice), severe low blood pressure, and coma. Thyroid storm requires immediate emergency care.”

The second worst migraine I’ve ever had was the hallmark of this storm. It was head between the knees painful. Because I have EDS, many issues had to be considered. It could have been an aneurysm, a stroke, or several other lovely things. Lucky for me it wasn’t, because going to the Emergency Room was useless. Once they heard the word ‘headache’ they stopped listening.  I tried to explain what my other symptoms were and they just did not care.  I couldn’t see out of my right eye, I couldn’t feel the right side of my face, I had a sudden increase in swallowing difficulty, I was running a fever, my blood pressure was low and the numbers close together. They ignored it all.  They left me sitting there for nearly two hours before giving me a load of drugs and wheeling me out the door with instructions to David to get me home before I passed out from the drugs. I didn’t pass out, thank you. While the drugs did take the edge off the migraine pain, they did nothing to address the cause of the migraine or any of the other symptomatology.

Luckily for me, I have an awesome doctor. A call to his office and I was placed in the ‘on hold’ rotation so they could pop in and see me as they had time and order tests. He found the Thyroid problem. This is not your normal thyroid issue that requires doses of ‘synthroid’ to keep it stable. The medicine I know have to take makes ‘synthroid’ look like candy. I have to take it for the rest of my life or have another storm. When he caught the issue he immediately sent me up to the Infusion lab and wrote orders for me to be slowly re-hydrated via IV and the thyroid medication added in. I couldn’t believe the difference. Even David remarked on it when he came home from work. Apparently I wasn’t that far away from full cardiac arrest. Which is interesting, because my heart itself, is as healthy as can be.

The results of all the testing were good. No lasting heart damage, no brain damage. Which is good because I have enough brain damage already. I have a variant of Post Concussion Syndrome that causes Parkinson's like tremors in my arms, hands, legs, and feet. It’s part of the reason I wanted to learn to knit, having an activity that challenges my fine motor skills helps with the shaking. Though the shaking is still an issue with drawing and painting. Still no forward progress on why my blood pressure numbers are off, but he is working on it.

So new adaptations are happening, as they so often do with chronic illness. Each new ‘now what?’ comes with it’s own luggage of things that need to be done, avoided, improved, removed, and otherwise incorporated into daily life. Each is it’s own new battle, added to list of battles in the never ending war of what is our life. Which sounds a bit negative, said that way, but it is true. Chronic illness is not a single battle, it is a war. A war fought for our lives. I’m proud to be a warrior, because the other option is giving up. I’m not ready to give up yet. Maybe someday there will come a ‘now what?’ that changes that, I don’t know. I don’t think anyone really can know, until it happens. For now, I’m not going to sit in a corner and mope, I’m going to keep doing things I like and finding ways to make it work with my failing body.

It’s an interesting experience, being healthy while falling apart. Most people fall apart because of bad health or health issues. As usual, I’m backwards. I’m falling apart and it causes a lot of my problems. It is a trip, sometimes, trying to figure things out, to connect dots that don’t even remotely look like they should be connected. Worse yet, is the feeling you get when something like this happens. I always feel so stupid, like I’m wasting everyone’s time and using up resources that could be better used for someone else. I find myself frequently apologising to doctors, nurses, techs, and others that have to push me through machines or inject me with something. I don’t like feeling that way, but I don’t seem to be able to not feel that way. Just part of it, I suppose.

Anyway, I’ve a few projects I’ve been slowly working on. Hoping to be able to share one or two of those on here in the near future. As always, please comment and share your own experiences.

Thanks for reading!

TH

Summer travel- flying?

Hello!

Sorry for the brief hiatus, we were on vacation, driving to the east coast to see grandchildren.  What a lovely vacation is was too! Which brings up another adapting subject:

How do you travel when handicapped?

There are so many possibilities because of disability level, ability level, and just flat desire to do things.

Today, lets concentrate on flying.  I can state, from experience, that flying is NOT a good option for me. Sounds silly, doesn’t it?  The quickest means is usually the best means as it limits the time of discomfort, right? No, not for me. I do it frequently, however, out of necessity.

Flying- oh you devil you, making it appear to be so easy and convenient. Appearances can be deceiving!  Horror stories abound regarding people taking their powered wheelchairs with them. Because of the batteries, they cannot be simply driven up into the cargo area and strapped down. Federal regulations mean the batteries must be removed and stored separately. That means that someone with very little or no experience in the machinations of a power chair is going to be disassembling and reassembling it. No worry there at all.  I’ve heard of cases where the chairs have been dropped out of the cargo area, falling 20 feet to the concrete below and smashing beyond repair. That poor child was on vacation with her family 2,000 miles from home. There is simply no way to get another chair, especially in the two week time frame of their vacation.  The airline’s insurance did pay for a new chair, which is good, but not helpful for an enjoyable vacation.

Manual wheelchairs can be more easily used. Mine is a life saver. If I am traveling alone. I simply request an aid from the airline I am using. They have people who do nothing but aid the elderly and disabled. The aid then does the hard work of pushing my chair, which is vital because pushing it myself causes wrist, elbow, and shoulder dislocations. I get escorted to the gate and usually they have me board first giving me plenty of time to make my way to my seat without falling on other passengers.  Yes, that has happened.  Nothing like those narrow little isles when your hip dislocates and sends you sprawling. They usually make you wait until the very last to deplane, however, which gives them time to retrieve your chair from cargo and have it waiting for you at the door.  There was one incident where I was on a flight with 3 very elderly nuns. (no joke!) who were going to a convent to retire the eldest of the 3. I believe she was in her 90’s. She had requested an airport wheelchair to get her from plane to baggage area. In their haste, and because of a lack of communication, they gave her MY wheelchair instead of the generic airport chair.  Have you any idea of what it’s like to have to track down an 90 year old NUN and explain that she’s in your wheelchair?

The chair has other benefits, also. You get side tracked on security checks which decreases the waiting line to none most of the time. I have a backpack that is specifically designed to be a ‘travelers’ pack. Travel Pro Luggage 9 It was expensive and I had to save up for months to afford it, but it is a lifesaver. The straps are sturdy enough to slide over the handles on my chair, leaving my hands free to do other things like handing over my ID and boarding pass.  The back and straps are padded so that if you do have to carry it as a backpack, it remains comfortable. It is so roomy that I can comfortably carry my tablet; cables, plugins, and backup battery sticks; drawing pads & pencils/pens: my DSLR camera with the extra lens; all my medication; my current yarn project; several changes of clothing; the TSA approved ziplock bag of hygiene products; along with other things like snacks.  If my grandson is traveling with me, it also gets packed with kid approved surprises. Usually small books or toys that encourage quiet play and hold his attention.  He LOVES to fly, however, and is very good at it. I’ve not ever had a big issue with him on a flight.

Having this backpack prevents my having to have a carry on or check a bag for short trips.  By the way, it’s considered a ‘personal item’ like a purse is, so it does not count as your one carry on bag. You just need to consolidate your purse items and use a small clutch that will tuck inside the bag. I love using this bag for everything valuable, as it effectively eliminates theft because it is always within your control. Only once has a stewardess told me it was too large for a personal item, I explained that my medication was inside and she dropped it immediately.

Trust me when I tell you that trying to handle one of the rolly type carry-on bags by yourself is pretty darn difficult to do from a manual wheelchair. It can be done, just not without problems and slowing you down significantly. If you can get an ‘aid’ then you can push it ahead while they push you, which is better, but still problematic when deplaning. If I do have to have one, I usually ‘gate check’ it to my final destination. There is no fee associated with gate checking, it simply means that they are going to toss it in the hold and instead of bringing it to you, they will toss it into the hold of the next plane you are on. That way I’m not waiting for it to be brought to the jet way and fighting it while making a mad dash for the next flight. If you’ve any experience in flying at all, you know that it seems to be the delight of airlines everywhere to arrive at the gate which is the absolute farthest from the next gate you need to leave from. In large airports like Atlanta, that can mean rushing a half mile or more.

To date, I have never had the airline loose a bag that I gate checked. I’ve never had one broken into either.  There is a quick trick for that I use, to discourage temptation. Use small zip ties.  The bag cannot be entered without cutting the zip-ties, unlike those silly little TSA approved locks. TSA doesn’t care about them, because if they want they can cut them, just like they can with the locks.  A baggage handler, however, would be caught out if the zip-tie is cut. With the small locks, they can be opened and replaced easily, thus making it appear nothing is wrong.  Naturally you need to bring extra with you, in your personal bag, so that you can re-zip them before your flight home.  You shouldn’t ever pack valuables in checked baggage, or gate checked baggage, if there is anyway possible to avoid it. Despite most people’s understanding of it, if your items are stolen the airline is not responsible.  Your only recourse is to file a claim with your homeowners insurance. Buried in the airline’s fine print is a blurb about ‘not packing valuables’ that leaves them with no financial obligation.  

Last but not least…. airplane bathrooms. Yes they are tiny and weird, which is bad enough, but add to that the effort of trying to reach it down a narrow aisle stuffed full of grumpy passengers with hips/knees/ankles that love to randomly dislocate, and it’s a nightmare in the making. There is no real solution to it, if you gotta go, you gotta go. In this case prevention is the keyword. I’ve a pretty good understanding of my body and it’s inner mechanisms, meaning I know how long I have after that 16 oz bottle of water needs to make it’s exit. I try to time it out so that I can go in the airport, instead of in the plane.  It’s some what more difficult with POTS, as hydration is vital to keeping the blood pressure at a decent level. Practice makes perfect.  Yes, I said it. Practice at home so that you have a reasonable idea of how often and when you are going to need the facilities.  I’ve pretty much got it down to a science now, and haven’t had to use a plane bathroom in a long time.  Course that is pretty much out the window if you have a long flight. Some international flights are 12 hours long.  Those planes, however, are usually significantly larger and easier to get around in.  

So, with all this experience why is flying not a good option for me? Well, it actually makes my pain levels significantly higher because of the constant movement followed by long periods of no movement. I do better if I can move now and again, in a consistent pattern, instead of in bursts. It also messes with my POTS symptoms.  I’m not sure if it’s the pressure changes with altitude or what, but my blood pressure usually drops significantly. I also broke an ear drum a couple of years ago, which lead to the rocks in my ear shifting, an issue called BPPV. That was no fun, and no fun to fix either. Since that time I have had significant issues with travel sickness. When my blood pressure gets out of balance it seems to negatively impact the motion sickness, increasing it to the point of nearly passing out. It generally takes me a minimum of 2 full days of resting and napping to recover from a plane ride, which cuts out a lot of enjoyment time on a 7 day vacation. So, I tend to avoid it if possible.

Next week, car travel, or possibly the sleeping arrangements.

Any input would be appreciated!

Have a great week.

TH

Summertime cooking

Hello!

Summertime cooking…. it’s hot, you’re hot, and very likely you’re pretty busy too. While I’m not running around with the kids anymore, I still find that taking time to make dinner during the summer is, well, a drag. There are other things I would rather be doing, like piddling in the garden, fishing, parked on the back deck with a good book, drawing, painting, you name it, if it’s outside I’d rather be there.  Problem is, a lot of that activity is strictly limited by the use of the wheelchair. Also limited, is my ability to spend hours chopping and preparing meals. So, I try to find a balance, things I can prep for the whole week and then only prep small things for the actual dinner night. Add in that we try to eat pretty healthy and it can be a bit of a challenge at times.

Here is an example, this was last week’s menu:

Monday Homemade thin lasagna and cheese bread

Tuesday Grilled chicken sandwiches and mixed berry salad

Wednesday Southwestern Salad with sliced grilled chicken breast

Thursday Crispy chicken wraps, fruit blitz

Friday Sirloin burgers and fries

Two things you need to know here.

1) I worked out a plan with my gastroenterologist to manage the EDS related digestive issues and to prevent weight gain. I was a very active person prior to the hip giving me a permanent parking ticket. That meant a drastic change in calorie intake, not just quantity, but quality and substance. For me, it has worked wonderfully.  I still weigh the same as I did when the chair first appeared 5 years ago. Unfortunately, the muscle has gradually morphed into fat from lack of exercise. That meant I had to ‘clean up’ the plan even more, limiting the ‘bad for me’ foods more tightly.  

The plan works like this, and please do NOT take this as diet advice!  I worked it out with the help of my doctor, so it’s tailored for me, other people have different dietary needs, so work out a plan with your doctor.  For me, it’s three ‘skinny’ days followed by one ‘fat’ day. On the skinny days, my caloric intake is very low, fitting my forced inactivity burn rate.  On the fat day, I can technically eat whatever I want, but as the years have gone by I've trimmed that back to mostly an uptake in healthy fats with a treat thrown in. (I’m a sucker for homemade frozen custard!)  The reason the plan works for me is this, by tossing in a day with a significantly higher healthy fat intake, my body is happy. Without it, only having skinny days, my body went into ‘starvation’ mode. You know, the mode when you feel like you are starving and every calorie turns into fat because the body is trying to pack up what it can.  Tossing in the fat day sends the signal to the body that ‘hey, it’s okay, plenty of food available, no need to pack rat fat’. I've also found that it makes skinny days easier when you know a fat day is coming.

So, look at the above menu and you will see what I mean. Monday is a fat day, Tuesday, Wednesday, and Thursday are skinny days, Friday is fat day again.

2) I’m married.  Haha, but no really.  My husband is one of those people that can eat an entire pint of gelato in one go and not gain a pound. So, he’s not always happy with my limited menu options. I have to find compromises, such as his salad options include higher fat dressings, lots of cheeses, etc.  Though I have noticed more and more, he isn't using them and is doing what I do instead, just in double or triple portions. He also works a very physical job, so his daily calorie burn rate is much higher than mine. At the end of a hot summer day, he’s tired, starving, nearly in a food coma, and the last thing he wants is to eat something that makes him feel ‘cheated’, as he puts it.

So, for last week, I purchased a family pack of chicken breasts and two pounds of sirloin tips. Monday’s lasagna was meatless, so no big thing there. Tuesday all of the chicken breasts were brined for 30 minutes before going on the grill.  If you aren't familiar with brine, you should be. It works wonders on chicken breasts, keeping them moist inside and giving them a lot of flavor. Two of the breasts were seasoned for the sandwiches that night, the rest only with pepper and a brush of olive oil before hitting the grill.  So, no more ‘cooking’ the next few nights.

Throughout the day on Monday and Tuesday I made little kitchen stops, spending 10 minutes or so prepping. Once to do the romaine, wash, chop and bag for the upcoming salad. Another for the bell peppers, etc, until I have everything prepped out for the whole week.  It works for me because my hands cannot take doing things like that but in 10 - 15 minute increments.

On Thursday I prepped the sirloin and made hamburger.  If you haven’t ever done that, it’s beyond easy if you have a food processor. I learned the technique over at Cook's Illustrated, where I learned how to properly brine chicken also, I wish I could post a link to the process for you, but they are a bit stingy and you have to be a member/paid subscription person to see it. They are worth it, however, if you want to learn WHY things work and taste the way they do.  At first I found the things to be complicated and overly fussy, but as I learned the why of it, it made a lot more sense and my cooking has improved a lot. Cook's Illustrated is the ONLY food magazine I subscribe to. They have a sister show on PBS called Cook’s Country, you can watch that free on your local PBS station.

I’m all in for healthy food, though there are still things that I either do not care for, or just cannot eat. Like bananas, I’m allergic to them, or cauliflower, I’m sorry but to me it tastes like dirt. So we eat a lot of beans and things like Amaranth; Quinoa; and Chia Seed. I toss amaranth in when making rice, and he doesn't even know it’s there, lol. Amaranth is an ‘ancient grain’, and is better for you in just about every single way than wheat or corn. It’s high in protein, also, which makes it an excellent choice for homemade power bars. Chia seed can be snuck into a lot of things, from our morning grain cereal (instead of just oatmeal, it’s rolled barley, rice, oat, millet, and buckwheat), to smoothies and salad dressing. These types of additions are a good way to stay low on the calorie intake while upping the value of each calorie because of it’s content.

Here is one of the summer recipes that we have fallen in love with it’s from a blog called ‘The Garden Grazer’:

Southwest Chopped salad

This is a great example of how to have a decent quantity of quality food that actually tastes good. The dressing is made with Greek Yogurt, but you would never know it. There is no cheese called for, but the hubby has never noticed it’s absence. With the addition of sliced (leftover) grilled chicken breasts, it is a very nice meal. It’s really nice after a hot day. I don't ever mix the dressing with the salad in bulk, however, because it doesn't keep well as a leftover. So I put the dressing in a jar and dress each salad serving separately. The Cilantro Lime Dressing from this recipe is fantastic! I use it on a lot of things, such as a dip for the Crispy Chicken Wraps', or in place of sour cream for tacos. I've even used it as a dip for chips.

The next night is ‘Crispy Chicken wraps’, again using the leftover grilled chicken breasts, from a lovely blog called ‘Mel’s Cafe’.

Crispy Chicken wraps

These wraps are surprisingly filling as well as easy.  This is also one that I would add Amaranth to the rice while it's cooking. It just ups the calorie quality a huge amount. 

I must say, however, that I do not use a skillet, I use a panini press that I picked up at Aldi’s for $8. Add a salad or other healthy side and this is a great meal. On the upside, these can be pre-made and frozen. I freeze them in sets of 2, and then seal them with the vacuum sealer. Just set them out far enough ahead to thaw (in the fridge before you leave for work) and then grill them.

Alldi's Panini grill

This is Aldi’s grill at full price. I simply waited for the sale to be over and it was moved to the ‘clearance’ rack. Still, even at $19 it’s not a bad buy.  You can crank out grill cheese sandwiches in a hurry with it!

Thanks for reading! As always, any comments, suggestions, or ideas are welcome.

TH

Laundry Day

Hello! Hope everyone is having an amazing week. I love the sunshine and heat, it’s the only thing that really gets deep into my joints and makes me go ‘ahhh’.  Well, that and a Hot Stone Massage, but those are expensive and sunshine is free. Today, I’d like to talk about one of those things we all, admitted or not, avoid to some extent. Laundry.

Now, laundry is a chore for everyone, but more so when you are a finicky tree hugger in a wheelchair. I love to hang my clothes on the line. Always have, just haven’t always had the space or the time.  Now I have both, sort of.  A traditional clothes line was pretty much out of the running as there was no real practical way to make it work for/with my chair. Not to be defeated, I pushed on, searching for a solution.

This is a 40 foot long retractable indoor/outdoor clothesline. I recycled an old pole to bolt it to and used zip ties to strap it onto the deck rail. At the other end I looped a zip tie around the support pole, for the height, and put a clip on it that fits neatly into the little plastic bit on the end of the cord.  It did require support in the middle, so I repurposed an old curtain rod, tacked a hook to it and ran the cord through it before using.  That made it not sag nearly as much, and put less pressure on the zip ties holding the ends in place. For less than $40, I had a nice long clothesline, on my deck, that I could hide away when not in use.  I confess, I did the happy dance while daydreaming of sheets fresh off the line and shirts that do not need ironing.

The clothesline, installed and in use on the back deck.

So, I try to keep myself on a schedule of doing things, mainly because it gives me a sense of goals and duty. This includes laundry, which is assigned to Friday, that way the clothes are clean for the weekend. Except David’s uniforms, which we do on Sunday evening. This gives me all day to let the stuff dry on the line, at least on good weather days. A problem soon presented itself. Transporting the laundry basket to the line and then down the line as I hung them up. Taking the basket out on my lap is passable, if a little awkward, but trying to manipulate the basket, the wet clothes, and the clothespins was very awkward. The only option I could make work was to put the basket down, hang the item, pick the basket up, move the chair and basket down a little, and repeat. Repeat in reverse to take down the dry items.   Okay, not a big issue really, for one or maybe two loads, but ten? Bending while using my ‘inside’ wheelchair is a bit like a normal person sitting on a bar stool and reaching down to get the laundry, it’s a long way. Yes, I’m extra bendy, but even being that way it still becomes a back ache when done repeatedly.

Then one afternoon I hit upon an idea.  It’s not a fix all, by any means, but it’s a lot better than picking it up and moving it each time!

This is a plant stand with casters I picked up last fall on clearance from Hobby Lobby. It was the winter home of the pineapple tree, but now the tree is out on the deck soaking up sunshine.  So, I used it.  It’s a heavier duty one, as the pineapple tree has gotten larger and it’s pot along with it.

Plop the laundry basket on top and Bingo! Now I can just shove it with just the foot part of the wheelchair. Totally eliminates the pick up and move between every item. As you can see from the picture, the basket is still a long way down, but this actually did raise it up a few inches.  Since I don’t have to bend, lift, bend, set down, repeatedly it has saved my back and shoulders a lot of soreness.

So there you go, another way to adapt.  I’m sure I’m not the first to think of this, but it sure made me happy!

I’m sure many of you have your own solutions, and I would love to hear them!

Post a comment to the blog, or post a comment and photo to the Facebook page by clicking here. Life, or something like it

You never know when your idea might be just the thing someone was looking for!

Thanks for reading and please come back!

TH

Freedom of Choice?

Recently my husband was home on a day off, he’s having some hip problems, and he spent a significant amount of time on the couch watching daytime television.  I rarely watch daytime television for one simple reason, it stinks. Everything is either talk shows competing for the Jerry Springer prize, soap operas (which I have always despised), and occasionally a decent show, like Rachel Ray (for the cooking part, it’s okay) or Ellen, which let’s face it, even if you disagree with her lifestyle, she’s really funny. I did happen to catch part of a news segment, however, that though short was very thought provoking.

In the news some politician had made a statement along the lines of ‘The ability for Food Stamp users to purchase food that is bad for them, is a contributing factor to the American obesity problem.’  The shit storm started immediately and viciously.

The statement was countered by such statements as ‘it’s a constitutional right to choose what I eat’ and ‘trying to prevent the purchase of unhealthy foods via the Food Stamp program would be impossible’.

Okay, here’s the thing. It wouldn’t be that difficult at all. The program already refuses the purchasing of alcohol and tobacco products.  While it would require work and effort, it could be accomplished.  The State of Missouri has a program called WIC-Women, Infants, and Children.  This program has successfully functioned for more than 20 years, and you know what? You can only purchase healthy food. Milk, eggs, cheese, veggies, low sugar cereals, etc. You can even use it at some of the farmer’s markets and to by your own veggie plants. If one state can do it, why can’t others?

Reducing the ability to purchase high fat foods would appear to have a great impact on the users of the program. Appearances can be deceiving.  Currently there is a whole underground market for EBT cards (there are no longer actual food ‘stamps’, its done electronically via a card similar to a debit card) that thrives because of this type of limitation. People regularly sell their EBT cards in exchange for half, or less, of the monetary value it contains. Why? Well, it’s precisely so that they can purchase the forbidden products. EBT users cannot buy the cigarettes or alcohol they want, so they sell their grocery money for half of its value and use the cash to make the purchases.

Yes, I know this for a fact. We have been approached outside of grocery stores multiple times by people wanting to do exactly that. These people usually say things like, ‘give me your grocery list, I’ll go buy your stuff, then you pay me half of it in cash’. Why?  Because the use of electronic cards means they can use your purchase habits against you. If you sell your card and someone takes it several hours away and uses it, bingo, you’re popping up as an anomaly.  EBT fraud comes with stiff penalties if you get caught. By waiting outside a store they normally frequent, they aren’t changing their patterns.

Just a point of fact here, participating in anyway in this type of arrangement is illegal and subject to prosecution. While there are many people who use the program as intended, it’s a case of one bad apple spoils the bunch.

Which brings me down to the arguments presented:  Is restricting the purchase of high fat actually going to make a significant impact on obesity rates?  Is it a ‘right’ of someone using a federal program to use it however they wish?

I can see both sides of this. As a tax payer, I’m keen towards restricting it. Why, because most of those people that are using Food Stamps are also on other government programs, like Medicare and Medicaid.  Obesity is an extremely costly condition, medically speaking.  That creates a larger burden on the Medicare and Medicaid systems, which is funded by tax dollars. There is a larger burden on the medical community, also, because of unpaid bills. Hospitals write off a huge amount of money each year for unpaid bills connected to under insured or uninsured patients. That translates into higher bills for those that can pay.  We won’t even discuss the whole insurance industry right now, it would take far too much room.

So I can see the idea of it working, but the road to hell is paved with good intentions, is it not?

Then you have the whole ‘it’s my right’ idea. I can see this too, as I don’t like the idea of someone telling me I cannot purchase something I want to eat or drink.  On the other hand, I tell myself ‘no’ all the time. ‘Don’t need the calories’ or ‘there are so many calories in that with so little benefit, I’ll pass’.  I think David probably gets sick of hearing me say that.  He’s uber skinny and can eat like a garbage disposal with no weight gain, me, well I gain wait just rolling by the donut counter in the grocery store. Partially because of the wheelchair, but partially just because that’s the way my body works.  So I self-regulate a lot. There are types of obesity that are rooted in medical causes, and types that are not. Saying no to everyone, even if they don’t have an obesity issue, to curb the ones that do, doesn’t sit right.

Is it really a ‘right’, though? Does a person have a right to be a burden on the Food Stamp and Medicare/caid systems because of their (non-medically induced) weight? Do they have the right to force the taxpayer to pay their food and medical bills because of their weight issues? Tricky question, that.  Even trickier would be how to decide who fits that category.  Who can certify that a person with obesity is from bad eating habits or medical causes? We all know that there are doctors out there that would say it was one or the other for a patient that annoyed them long enough about it, just as there are others that never would.

Then what? Force those people into exercise and diet programs? That would outstrip the Food Stamp and Medicare costs in a hurry.  Not to mention having half the country screaming ‘Socialist!’ As I said before, the Missouri WIC program already does some of these things. The parent participating has to take classes on nutrition, cooking, and healthy choices for them and their baby, if they wish to receive the free food. The problem is, most don’t really ‘learn’ from it and discard what they have been taught as soon as the last voucher has been redeemed. (WIC only lasts until a child is of a certain age, under 5 I believe but it’s been a while since I looked.) At that point they go back to whatever habits they had before.  

So would restricting actually work?  In theory, yes, but theory isn’t real life. Is it a good idea, well maybe, but it would take quite the effort to work it all out. 

So, how do you feel about it?

Does freedom of personal choice outweigh the increased tax payer burden?

Do you think it would be possible to implement such restrictions?

Do you think it would actually make a significant impact on America’s Obesity Epidemic?

I love these types of discussions, because everyone has their own unique view on subjects, things I might not have thought of, and I believe that gathering the largest amount of information is the best way to work out a real question. I emphasize ‘Discussions’ here, as that is what it is. Please feel free to comment in a civilized manner, without any name calling or political party flag waving. This is not a political discussion, merely an ideological exercise.  

Thanks for reading!

TH

Lists, lists, and more lists.

Sorry for the lateness of this post, things have been a bit stressful here this week.  I really don’t like to talk about what is going on with my EDS experience, instead focusing on ways to get along in a fashion that is beneficial. Sometimes, however, it is not possible to do one without the other.

So, today I’m going to talk about lists. If you know me personally, you already know that I’m moderately OCD in certain areas. One of which is lists. I make them for all sorts of things because I find them useful. I list things I need to pack for vacation to avoid forgetting something. I make a menu and a grocery list every week so that I only by what I truly need. I make lists of things that need doing, bills that need planning for (like car insurance), my husbands vacation weeks, yarn I have, knitting projects I’ve done, etc. I think, at the very least, I could easily be labeled ‘organized’ in that department, just don’t look at my sock drawer or closet. Sometimes I even make lists within lists. Such as the grocery list. I frequently add a list of coupons I have, where they are good at (such as pre-loaded ones on loyalty cards) and paper clip any printed ones to it.

Why? Well, I like efficiency. I find it a tremendous waste of time to wander around a store trying to recall what I have in the freezer compared to what we might want for dinner. With EDS and the wheelchair, shopping is already very challenging without adding that to it. I like to go in, get the things on the list and get out. You might wonder why I do the grocery shopping by myself. It is for the same reason, efficiency and trying to make it the least stressful on my body as possible. You see, having someone along slows me down, and because they cannot read my mind, I’m always waiting for them to catch up. In the hubby’s case it’s a proven fact that when he goes along the grocery bill increases $20 to $50.  I also insist on bagging it myself simply because the average person has absolutely no experience with doing things from a wheelchair.  This lack of experience usually results in the over packing of bags, making them far too heavy for me to manage by myself.  It isn’t their fault, it’s just a lack of experience and I sincerely hope that none of them ever have to gain that experience first hand.  

I feel the same about packing for vacation. I start the list early and add to it as I think of things so that come packing day, I’m good to go. Unlike my husband who waits until the last minute and just randomly throws things in a bag. I think every trip we have ever taken has included a shopping stop because he forgot socks, or undies, or undershirts, etc. I’ve learned during our marriage that there is really nothing I can do about him doing this. So I don’t stress, or try to help him pack (which is always met with ‘leave me alone’) and I don’t say ‘I told you so’.  Basically, I cannot impose my sense of orderliness on him and trying to do so only causes headache and arguments. I also make lists about routes and places to stop, nearby hotel prices, activities in the area we might want to consider. For years it was a tug-o-war between us. I wanted to know where we were going to stop so I could get the best price and place. He didn’t want to think about it and would say it didn’t matter, we’d stop where we’d stop and be done with it. After years of this, I said okay and just didn’t plan anything. Let us just say that it was a cruel way to teach us both a lesson. I learned that it wasn’t so bad being unscripted. He learned that he relied far more heavily on me to plan and therefore make it easy on him, and save us a significant amount of money vs ‘at need’ hotel rates.  We compromise now, meeting in the middle of unplanned and planned, and it works beautifully.

Yesterday, for reasons I am not at liberty to discuss, I was forced to make a list that I didn’t want to.  I’m not talking about a list ‘ten things you need to do but procrastinate on’. I was forced to verbally list every single thing that I have lost due to EDS, under oath. So no skipping or fudging or avoiding allowed. I told myself that it wasn’t a big deal, to use my usual humor to get through it. About for items into the list, my humor failed me.  

Hearing it, laid out bare for all of them to hear and having it transcribed onto a permanent legal document was like, well, it was horrendous. It was emotionally devastating in ways I could never have predicted.  I am not going to list the things here, once was enough, and as I said before, I do not like to linger on the negative side of EDS. Hearing it, in my own words, some how made it more real, more devastating. It’s an area that I usually gloss over and ignore as much as possible, as many people with chronic conditions do. It’s one of the ways we are able to maintain a sunny attitude and not go around with the ‘I hate the world’ thundercloud over our heads. For the geeks out there, it was like Luke walking into the cave to confront his worst fears. In fact, it was so horrendous that had to struggle hard not to let it show. It was so emotionally draining, that by the time I was done I was utterly exhausted. I felt it down to the depths of my heart. An pervasive sadness, some what akin to morning. Which, I suppose it was, morning the loss of parts of my life.

I was emotionally and physically exhausted, and apparently I looked it. I was questioned as to my ability to get myself home safely and in the end was required to call one of the concerned parties to advise them that I had, indeed, arrived home safely. For the rest of the afternoon I was in a sort of brain fog. My mind was chewing on this list, arranging it, rearranging it, adding to it, and attempting to find a way to file it away in a book that would be placed on a shelf in the deepest (and unvisited) part of my mind. I caught myself looking off into nothingness and just letting my mind do its thing, because it was going to do it anyway and trying to stop it would only prolong the agony. This lasted straight through to the morning alarm, when I had to beg off getting up and making breakfast for us. I stayed in bed until 10 or so, got up and took a shower, trying to wash away the last remaining vestiges of scar paper.

After a while of more zombie like brain fog, I gave up and went out, weeding in the flower beds for several hours. Which actually means I spent time scooting my garden blanket from spot to spot and tossing weeds into a bucket in between long bouts of just sitting there absorbing the positive energy of the nature around me. Something about that always seems to recenter me. I also figured that writing about it would be cathartic in its own way, hence this post.

If you made it this far, thank you for reading. Your attention is appreciated and I hope I didn’t bore you too badly.

As always, any questions, comments, suggestions, or opinion sharing is welcome.

TH

Time to earn! Alone Time, Part 2

After writing last week’s blog, I received a question from a friend. It’s one that I’ve been asked many times, so I thought I’d just put it down here for all to read.

The question was “How is it that you are on disability (aka limited income), but you are always buying things?”

The ‘things’ range from art supplies, knitting supplies, yarn, books, garden stuff, etc.

So, here is my answer, anyone can do it.

I use some of my alone time earning ‘rewards’ from different programs. More often than not  I am using rewards to pay for all, or a good portion of whatever I am buying.  I’ve learned by trial and error which are worth it and which are spamming idiots. There are always knew ones coming along, and sometimes favorites don’t survive, so you have to just keep looking around.

Here are some of my favorites:

Gongos Research

Gongos is the one I’ve been a member of for the longest time, probably 4 years now. Gongos is a research community with different options depending on your questionnaire answers. Sometimes it is a flash poll, sometimes a survey, but sometimes you get lucky and will land on a panel. You earn Tokens for the different activities, amount of tokens vary by activity. The tokens collected can then be exchanged for rewards, like Amazon e-gift cards.  You can set your preferences to participate, making it convenient to work at it when and how often YOU want to.  

One of the things I like about Gongos, no spam! It’s not one of those survey sites that send you 20 emails a day. Gongos doesn’t sell your information either.  The activities are sponsored by real companies that want real meta-data. I’ve done panels for Old Navy, a local hospital ER group, a computer company, and more surveys and flash polls than I can recall.  

Savings Star

I’ve only been using this one for three months or so, but I like it. As it continues to grow it could turn into something great.  Savings Star works off of your local grocery store rewards card (Gerbs Plus, Hyvee Fuel Saver, etc.) and for online shopping. You can browse through their coupon page, select any of the coupons you want and go do your grocery shopping. The difference is, instead of getting 50 cents off an item in the store, you get 50 cents in your Savings Star account. The one I use most often is the produce coupon. They feature one produce item every week or so, and it’s usually like 20% of the total purchase price on bananas,  avocados, or apples, etc. How often have you seen a coupon for bananas?  (Yes, I am allergic to bananas, but the hubby isn’t, so I get them for him). If it is something I’m going to buy anyway, then why not earn cash? If you start your online shopping through their links, you receive credit in your account. I haven’t done this option with them much yet.

Why is this good?  Because it adds up and then you get to spend that money to buy a reward. Again, my favorite reward is Amazon e-gift cards. You aren’t going to earn a fortune, but I do something on it once a week, when I do the menu and grocery list, and it adds up. I’ve already scored several $5 e-gift cards from them.

Yes, they are collecting data. From your grocery rewards card they can see what you purchase each time you use one of their coupons.  This one didn’t bug me like some other data mining sites.  Why? Because they are not collecting my specific information. The grocery rewards card only tells them what was purchased, no information about me specifically.  They don’t collect payment information.  Basically, they collect less information about your shopping habits than the grocery store that gave you the rewards card.  

Savings Star leaves the participation amount up to you. You can do as little, or as much as you like. Also, no spam and they don’t sell your info.  I get one email a week with the weeks new coupons in it.

Ebates

I’ve been a member of this one for a while, but I don’t use it like I probably should. Mainly, I forget about it, but also because I don’t do that much online shopping. I have specific things I buy at specific times. Ebates works like this: they partner with sites to get discounts, usually free shipping, or one time special deals. When you shop, you start at the Ebates page and click their link through to the site you want. Once your purchase is complete, Ebates gives you a ‘rebate’ amount and puts it into your account.

So lets say you want to order a Craftsman socket set for a Father’s Day gift. Start at the Ebates homepage, click their link through to Sears and buy what you want. In a few days you’ll receive a rebate in your account for a percentage of your purchase. Once you receive enough rebates, they give you the cash. I have them deposit it directly into my PayPal account.  Fun part is, you can click through their link to Amazon, use your e-gift cards earned from other sites and still receive a rebate from Ebates. Double win!

erewards

This one is a bit different. Erewards partners with specific companies.  In my case, Upromise. I have had a Upromise account for a long time. If you are not familiar with Upromise, and you have young kids or grandkids, you should be. Upromise puts money into a college savings account. It’s similar to the others, start your shopping through their site, and a percentage of the purchase goes into the account. You can also link it to your grocery store rewards cards.  The money goes into a college fund, for whomever you want.

Erewards is a survey site. You earn ‘money’ for taking the surveys and then trade that money in for a deposit into the Upromise account. The surveys vary in size and earnings, and you can participate in how ever many you want.  If I’m in the mood for it, I can do enough surveys in a couple of weeks time to earn a $50 deposit into the Upromise account.  So while I don’t directly earn spending money, I am putting money away for the grandkids.

Ibotta

Ibotta works very similar to Savings Star in that you earn the cash in your account instead of money off at the cash register. They have different rebates for groceries, in store shopping, and online shopping. For example, this week I used the Milk rebate and the ‘Back to Nature’ granola rebate. You go through the list, pick the items you want and do the activities. Usually a poll, or a ‘share it to Facebook’, sometimes a commercial. Each activity unlocks more rebate money.

For the ‘Back to Nature’ granola, I took a poll, learned a fact, and did a ‘how to’, to unlock 75 cents. Then when I got home from grocery shopping, I scanned the product bar code, snapped a picture of the receipt and submitted it. $1.25 credit into my account (including the milk). Once you hit $5, you can keep building it, or transfer it to your Paypal account.  I’ve earned over $45 in the last 6 months through them.

Fun tip for this one, the Ibotta reward has nothing to do with the actual purchase price.  So, you can match it up to sale ads, your coupons, and or rebates from other programs like Savings Star.   My best deal yet was on Ziploc. One week I was lucky enough to have a $1 (paper) coupon, the store had them on sale, and Ibotta had $1.25 reward. I purchased $9 worth of ziploc bags/containers for a sale price of $7, less the $1 paper coupon, I paid $6. Then I received the $1.25 reward from Ibotta. So really, I bought $9 worth of ziploc for $4.75.  

I hope this helps explain why I can occasionally afford to do something, usually via Amazon, lol.  I do choose the Amazon e-gift cards a lot, mainly because they never expire and if Amazon doesn’t have it, you probably can’t find it anywhere else anyway. The e-cards are good at all the Amazon sites too, like Amazon local, or Amazon Marketplace.

Any questions, or if you have a site you’d like to share, please leave a comment.

Thanks for reading!

TH