Thursday, October 25, 2012

Chronic Financial Illness; Part II

So my plan was to cover a separate aspect of financial issues while ill, but I really need to discuss some things pertaining to what I covered in "Part I" first.  Then I'll discuss the new stuff.

I'm being brave because the whole world is about to know my intimate financial problems/details.  (Well, the whole world is able to, but it's really just the 5 people in the world who choose to read my blog.) None-the-less...

Our financial situation, as you can imagine, has been horrible since I had to quit working in December 2009. I had enough paid time off to get us through until February 2010.  Since then we've struggled.  Since my husband was unemployed at the time I got sick (whoa... double whammy!), we had zero income for awhile.  That is when my parents kept us from living in a van down by the river.  (Are you picturing Chris Farley and laughing or smiling?  I am.)  Unfortunately, we will never be able to pay them back for everything they've done for us.

As time went on, my hubby (yes, I just said hubby) found a job.  After working at that job for awhile, he got a promotion.  We were both ecstatic.  He was working hourly and having to work over 50 hours a week in order to keep up with our bills.  With his promotion he would be getting salary and it was equal to his 50 hours a week (with the overtime).  Great!  That meant that he would be available for his family more often because he wouldn't have to work overtime, and because he would be able to take me to a doctor's appt if necessary and not get penalized on his paycheck for it.

We thought, based on the budget I had put together, that we would almost break even each month with the amount of salary he is getting.  However, I didn't include some things in the budget, I underestimated the cost of my prescriptions and medical bills by a LOT, and I didn't include extras - clothes/shoes, bday presents, school supplies, car repair, occasionally eating out (which is necessary sometimes.. like when both parents are sick, I'm in the hospital, or I'm really sick and it's soccer practice night, etc.)  Therefore, all of that added up to over $700 a month.  That is the amount we over in debts vs income.  A couple of months of that can be taken care of by using credit cards for gas and groceries.  Then it's taken care of for a couple of months by not paying medical bills and/or a credit card bill.  And then we have where we are now.... screwed!

We receive at least 10-15 phone calls a day from companies we owe money to.  We are behind on our mortgage - to the point of receiving letters threatening the dreaded "f" word.  I can't schedule another appointment with my pain doctor until we pay the entire amount due to them.  You get the idea.  So, when we say we can't afford something that only costs $5-$10, now you know why.

Even though I know you're all so intrigued with my financial issues (oh the things I do for the sake of helping others)...  Let's move on to the next aspect of chronic financial illness...

Being ill is not cheap!  Before I got sick I never realized how much is not covered by insurance.  As a nurse and/or the average healthy person, I thought that when you get sick, if you have insurance, you're pretty well covered.  I knew the bills still pile up because of copays, deductibles, and co-insurance.  However, I never realized that there are plenty of things that people need when they're sick that insurance just doesn't cover.  I know better now!

The biggest thing that isn't covered by insurance is medical equipment.  I did get an electric wheelchair that was covered by insurance.  However, I had to hold a huge fundraiser (my garage/bake sale in '11) to cover the cost of the co-insurance and deductible which put the cost of the chair at almost $3K.  In addition to that, insurance may pay for the majority of the cost of the wheelchair.  However, they don't pay for what you need to take the wheelchair anywhere - a chairlift for your vehicle.  Those cost about $2500.  Once again, that was paid for by the fundraiser and some generous donations.

Okay, so now I have a chair and a way to get it where I'm going.  However, my house is two stories.  So now we need a ramp or chair lift for our house.  We had a couple of people come over to see what our options are and give us estimates.  It turns out that because of the way our house is set up a ramp would not be realistic (it would take up our entire front yard) and a lift would run around $5K.  (These "K"s after prices are killing me!)  We did well at the fundraiser but not that well.  So that was out of the question.  And, guess what!  Insurance doesn't cover a dime of that either.  In the end we ended up buying a used wheelchair for upstairs (which is where I spend all of my time unless I'm leaving) and we keep my new w/c in my car for when I go places.

If I get a stair lift will I be
as happy as she is?
So far we've found ways around everything, right?  Wrong.  I now have a wheelchair upstairs and downstairs.  Then there's the problem with the stairs themselves.  I am able to walk up and down the stairs most of the time as long as I'm careful and take them very slow.  There are days, though, that I have been out at a doctors appointment or something that wears me out and I am unable to get up the stairs once I get home or I am able to get up the stairs but that last little bit of activity makes me more sick.  Put in a stair lift you say?  Oh, well, I'd like to, but a stair lift that costs over $1K used or $2k new is not covered by insurance either.

When I go somewhere I am lucky to have a wheelchair and a lift in my car for that wheelchair.  My wheelchair is kept in the back of my SUV.  That means that the back has to be opened before the lift can come out and closed after it's put back in.  All of that opening and closing is done manually, by me if I'm by myself.  One more thing that I am able to do for now but not very easily.  Once again, an electric/power liftgate is definitely not covered by insurance.  And that cost definitely requires one of those fancy "K"s behind it as well.

Those are just the big things.  The only "treatment" for Mitochondrial Disease is the "mito cocktail" which is a group of supplements that all mito patients are instructed to take.  Some people notice a difference as they're taking them.  Others (like myself) may not notice a difference on a day to day basis but are still supposed to take them because they may be life lengthening.  The coq10 is the primary supplement.  We cannot just take coq10 from walmart, cvs, or gnc.  If we (mito patients) want the most effective coq10, we have to get it online from a couple of suppliers.  And when taking 1200mg a day, it costs $200 a month.  That's only ONE supplement.  Luckily that's the most expensive one, but it all adds up.  AND that's only the supplements.  My prescriptions cost over $300 a month, and yes, that's with insurance.

Then there's the things that aren't necessary but very important, like eating healthy.  Why is it that eating healthy is so damn expensive but eating junk food is cheap?  That's why everyone in the US is overweight.  Well, that's part of it.  When you're low on money it's very difficult to buy healthy food.  There's also the subject of how easy and fast it is to eat non-healthy foods and that is half of it, but we're not discussing that topic right now.  One thing at a time.

I'm sure I can think of plenty more examples of ways more money would help me live a healthier, happier life, but I think you get the gist.  So, as you can see, finances have a HUGE impact on people with chronic illness.  Not only does chronic illness impact finances, but finances impact chronic illness.  I know I wouldn't be well if I had  more money.  However, I am pretty sure that my health would improve a noticeable amount if I was able to live the way I really wanted to live but can't because of a very limited income and growing debt.

Monday, October 22, 2012

Mitochondrial Disease and death

Tonight I shed tears for another life lost to Mitochondrial Disease.  

This time is a little different than the other times that I hear of someone passing way too early because of this horrible disease.  I have shed tears before, yes.  So that is not different.  Usually, however, if I cry a little over a lost life from mito it's because I'm not in a great spot myself at the time.  I'm either having a bad day emotionally or physically already.  

When I hear of someone passing from mito it is through my network of mito family and friends that I have developed on facebook.  Up to this point I have not known the person who passed or any of their immediate family members.  I have only known of them, if that.  It is still difficult to hear, yes, but not like it is when you know that person (obviously).  This time I am facebook friends with her mother.  Her mother has, in fact, helped me many times with her kind words and her advice.  However, this is not the reason why it's different this time either.

The passing of this mito warrior has affected me more this time because Leslie was 24 years old.  She was married but did not have children.  It is so much more difficult to deal with her passing because she was an adult.  Children with Mitochondrial Disease are not expected to live long lives.  Every year they are with their parents is a blessing.  The parents of children with mito are told by all of their doctors that they will not live to see their 20's and usually they will not make it through puberty.  Some kids... a lot of kids.. will not even make it to age 10.  Everyone with mito knows that it's very often a fatal disease, especially in children and/or childhood onset.  However, it is not usually fatal in adults with mito and/or adult onset.  That is what makes this so heartbreaking and difficult to deal with.

I don't know if the people around me (i.e. my family and friends) realize that this disease can be fatal.  Everyone thinks that this is just something that has changed my life so that I cannot work and I have to use a wheelchair to get around much of the time.  This disease can change at a moments notice, or it can slowly change overtime.  Either way, it's not getting better and, for the most part, not remaining the same either.  I've seen the changes since I was diagnosed.  I am very thankful that they aren't those "at a moments notice" changes.  

Now, I am no where near as sick as many adults with Mito, but that does not mean I do not get scared.  Do I have the same fears of death as someone with cancer might?  No.  But that doesn't mean I don't have them.  I'm scared of leaving my kids and my husband mostly.  Any time I think about death I'm not scared for myself.  I'm scared for the people who love me.  I just do not want to do that to them.  This disease is hard enough on my kids to begin with.  I do not want my kids to have to grow up without a mom completely.  (I say completely because they've lost a good portion of their mom already.)

I do not know the circumstances surrounding her passing.  I do know that Leslie became sick at age 19 and has, therefore, only lived for 5 years afterwards.  My heart breaks for her husband, mom and everyone else in her family and they are in my thoughts this week as they deal with the pain of losing someone they love dearly.

Rest in peace, Leslie Williams.

Friday, October 12, 2012

Chronic Financial Illness, Part I

Being chronically ill is very difficult.  That's what this blog is all about, living with Mitochondrial Disease, a chronic illness, and how difficult it is.  As you can tell by the many things I talk about on my blog, there is a long list of things that make chronic illness hard.  There's the physical aspect; which is the largest part of it, obviously.  Then there's the mental/emotional aspect of it.  There's plenty of that as well.  You all are well aware of that aspect of chronic illness since that's what you hear a lot about.

And then there's the financial aspect of chronic illness.  It is a HUGE part of chronic illness.  Interestingly enough, however, I haven't discussed that part very much, if at all, on my blog.... despite dealing with it everyday.

There's a stigma about discussing finances with others.  It's interesting, too, that I'm okay discussing my poop on my blog for all of the world to read/see, but I'm embarrassed about discussing our financial issues.  Despite the stigma and embarrassment, I've decided to write about the financial issues that surround chronic illness... for two reasons.  One, I had a bit of a realization of our financial situation in regards to my illness last week.  (Which I will discuss below.)  Two, I have had many people tell me that my blog helps them by letting them know that they're not alone.  If anyone who reads my blog is dealing with Mitochondrial Disease, or any other chronic and/or progressive illness, they will understand the financial issues surrounding it.

As I stated above, I had a bit of a realization about a week ago.  Prior to becoming ill I was working full time as a nurse.  I had great health insurance, short term and long term disability, 401K, etc. etc.  All of our medical bills came from infrequent doctors visits, mostly by my daughters (kids are always getting sick), the occasional worry of a broken bone as kids always like to scare their parents with, and, visits with a doctor and/or tests to fix running injuries.

Don't get me wrong, we still had medical bills to deal with.  We still had to make arrangements for payment plans because we weren't able to pay the bills in full.  Can anyone?  However, due to the infrequency of the visits and the low $500 deductible because of my good health insurance, we were able to pay off those bills by the end of the year.  When the new year came around, and therefore, a new deductible, we had either paid off the previous year's bills or were pretty close to it.  I never felt like we were drowning in medical bills.

Here's where my realization comes in.  This is never going away.  Shocker!  I know.  Why am I just now coming to this realization when I've been dealing with this for almost 3 years?  I don't know.  I think it's because up until recently (about 6 months ago) I was still somewhat in denial that this is going to be my life... forever.  I was always thinking (consciously or subconsciously) that this would all go away.  I didn't think about the lifetime effect my medical problems would have on us until recently because at that time we had just fulfilled our deductible and had a long time to go before we had to start over again.

So, with the new year right around the corner and medical bill collectors calling 8-10 times a day, it finally hit me.  We are never going to be able to pay off our medical bills.  We are never going to be able to have a day without collectors calling.  As of right now, we are only able to pay $10 a month to each of the 15 companies that we owe money for medical bills.  It is just enough to keep the large majority of them from sending my account to the collectors.  However, not all companies will accept just $10 a month, and that's all we can afford (actually, we can't afford that even, but we are attempting to make it work).  That is why we are still receiving phone calls from bill collectors.  If we don't pay the $25, $50, or $325 a month that they require, they send our account to collections.

The problem is that we are barely making a dent in what we owe for all of my medical bills and in less than 3 months they will start piling up in large amounts again.  Right now when I see the doctor or have a test done it only adds a small amount to what we already owe.  But when we start over with our $2000 deductible, every time I need to see a doctor or have a test done we will owe 100% of what it costs.   It only takes a couple of months for that $2K deductible to be fulfilled.  So that $2K will be added to what we still owe from 2012.  And with only paying a small amount each month, we will, again, be far from paying it off by the time 2014 rolls around and our deductible starts over again for that year.  I'm sure you can see the visious cycle.  This is what hit me.  Our medical bills are just going to add up and add up through the years.  And, unless we win the lottery, they will never go away.  With my "Type A" personality, I absolutely cringe knowing that we will never be able to pay them off.

The other financial problem with chronic illness is that I can't work.  I do get social security disability, but that's less than half of what I was making as a nurse.  That's not even the part that bugs me the most.  That is the fact that I can never get a raise or find another job that pays better or work extra hours because we're going through a tough patch.  I have ZERO control over how much money I make.  I worked my ass off getting my bachelors degree as a single mother and this is what I get out of it... a lifetime of dismal pay.  (Speaking of college - I'm still working to get my student loans discharged due to my disability.  I haven't had to pay them during the application process so that helps.)

In addition to all of this, my disability just had to hit during a major recession.  So we're not the only ones suffering.  Which means that it's difficult to get help.  We have done everything we can to lower our bills.... while still keeping my sanity.  I say that because we could always cancel cable, movie rentals, and internet to save money.  However, if we did that, we would be paying a lot more money on psychiatrist bills because I would go crazy... seriously.  We have put in a ton of time trying to find a solution to lower our mortgage (and so has my sister, who is in real estate).  It's just our luck.  We do not have a loan that was sold to fannie mae or freddie mac so we don't qualify for any of the government assisted mortgage relief.  Our house would appraise too low to refinance.  Which is also why we can't sell it and move.  We would wind up paying on our mortgage and another one if we move since we wouldn't be able to sell our house for what we owe on it.

The stress that money puts on me doesn't help my health either.

I do want to make one note... if it wasn't for my dad and step-mom, we would be living in a van down by the river.
(If you're a Chris Farley fan, I've included the full video below.  I just wanted to throw this one in right here so people would know where my "van down by the river" reference came from.)
We are SO thankful to have their help.  Because of the generosity of family, friends, and even some strangers, we have been able to keep thing as normal as possible for our girls.  That is very important to my husband and I.

So, Mitochondrial disease doesn't just drain energy, it drains our wallets too.  We are out of solutions and out of money.  We don't know what to do anymore.  How are we going to do this for the rest of our lives? - Money doesn't solve problems, but it could solve my money problem.

Tuesday, October 9, 2012

An Enlightening Experience

Last week has been a difficult week for our family.  At the same time, it has been enlightening.

My husband, caretaker, and children's father was ill all last week.  He was sick for 9 long days.  He has had a horrible sore throat, headache, and extreme fatigue.  Most people, especially the people with chronic illness who read my blog, would say, "Sore throat?  So what!"  You know what?  I would normally say that too.  However, I know my husband.  He does not just lay down and take it easily.  In the 10 years I have known him, I have never seen him this sick and for this long.

The first clue to me that he was feeling absolutely horrible was that he actually let me help him.  I was getting up and getting things for him the majority of the week.  This oh-so stubborn man must be feeling extremely horrible if he's letting me take care of him, despite the fact that I am ill as well.

So, the first half of the week, luckily I was feeling pretty good, above normal by my standards.  You god freaks out there can blame it on god setting us up... I blame it on adrenaline from feeling the need to take care of my family with no help and a lot of rest the week before because of a mito crash at that time.  However, after a few days of taking care of everything around the house and with our two daughters, I was starting to struggle and things were starting to pile up.

Now, my family knows my hubby has been sick.  I even went to a family gathering a week ago Sunday without him, and everyone was asking why he wasn't there, etc.  So everyone, at least almost everyone, knew I was taking care of the kids, house, my husband, myself, etc. on my own.  Everyone must be really busy in their lives right now because I didn't hear from anyone wanting to help.

After making myself sick the night before from all of the activity (fixing dinner, grocery store, gas in the car, showering with my daughter, putting her to bed, etc.), I finally sent an email out to family asking for help or at least suggestions.  Luckily my parents and my aunt came to our aide.  No surprise that that's who it was.  I don't need to go on about our support system or lack there of in some instances.  If you've ever read my blog, you're well aware of that part of my life.

As I said in the start of my post, this last week has been enlightening.  Now, you may all think that it was enlightening because I realized how much my husband does around here since he wasn't able to do it.  However, that wasn't it at all.  I am already WELL aware of how much my husband does around here.  I tell him all the time how awesome he is and how much I appreciate what he does for this family.  I know how screwed I would be without my husband.  I am thankful every day that he has not, and will not, leave me.

"So what was so enlightening," you say?  A few days into his illness, my husband took an antibiotic that made him sick (nausea/vomiting).  For the majority of his illness, especially the first half, he was in a lot of pain in his throat.  I could tell he was really struggling from the pain.  Watching him grimace from pain and listening to him getting sick in the bathroom really upset me.  It's so hard to know that someone you love dearly is suffering.  Especially when you can't do anything about it.  I just sat in bed listening to him getting sick wishing I could do something to make him better.  I just couldn't stand seeing him in pain and vomiting.

THAT is when it hit me.  Not only does my husband and best friend (same person btw) have to take care of the kids by himself, do all of the housework and chores by himself, and take care of me ever since I got sick, but he also has to deal with the emotions of watching me suffer and not be able to do anything about it.  My oldest daughter has to deal with this as well.

I've always been SO appreciative of everything my husband does for me.  He cooks all of the meals.  He does the laundry.  He transports the kids to all of their activities and me to all of my doctor's appts.  He cleans the house.  He works over 40 hours a week.  He finds ways outside of work to make more money for us to pay off medical bills, prescription costs, etc.  All of these things are the obvious struggles of having a wife who is chronically ill.

The not so obvious struggle is the emotional one.  He, and my oldest daughter, have to watch me in pain, vomiting, too exhausted to get out of bed, too weak to walk, and more.  This has got to take a toll on him.  However, I very rarely see that it does.  That doesn't mean it doesn't affect him.  It just means that he is so strong that he hides it from me.  Instead of showing me that my illness is bothering him, he does whatever he can to make me laugh.  He is always trying to make me feel better, even if it's just a quick smile.

I have always thought I appreciate everything my husband, best friend, and caretaker goes through when dealing with this illness.  I now know that I didn't... until now.