Well, it's been 9 days since my last post and things haven't gotten any better. Of course, you probably don't know what I said in my last post since a whole whopping 7 people read it. I'm setting records here! Then again, I'm also not writing anything very insightful at the moment either. Recently it's been more bitching than insightfulness. And unfortunately, that's not going to change with this post.
Earlier today, when I was out running an errand despite having zero energy and having increased weakness and pain, I was giving some thought to why I've been sick so much recently. It occurred to me that the reason why I've been sick more often was because of what I was doing at the time... running an errand... better known as activity. I will explain...
Because of our increasing problems with money and inability to pay our bills, my dear husband has had to work a lot extra recently. Just last week he worked almost 60 hours, 12 of them being on a Sunday night from 5:30pm to 6am and then taking a hour long "nap" before going in to his regular job at 8am. As you can imagine, he was exhausted that night and for a couple of days afterward. Unfortunately, that also fell at a time that I was having another mito crash. So I wasn't able to help with much of anything. In fact, I just added more work for him to do since he had to take care of me.
Of course, with how much he's been having to work recently, I haven't had much of a choice but to help with things. Life goes on whether I'm sick or not. The problem is that the more I do, the sicker I get. The more my husband works, the more I have to do, whether I'm already sick or not. But since I still can't do very much, things don't get done around here as much as they need to be - i.e. laundry, cleaning, grocery shopping, etc.
I just wish we had someone to come help us once a week. If we had help once week for 3 or 4 hours, we would be in much better shape. Laundry would get caught up, some cleaning could be done, and a couple of errands could be run, and maybe even transport my 13y/o to soccer practice. I had someone who did just that for a couple of months when we had the money (after I got my disability back pay). When we started struggling with money again we had to let her go. Then, when I was getting sicker and had palliative care, they sent a volunteer who came once a week for 2-2 1/2 hours and helped with everything I listed. She continued coming for a few weeks after palliative care was discontinued but she stopped helping as much and sat and visited instead. We did okay for awhile during the summer because I had more good days than bad and my oldest daughter wasn't in school so she was able to help with everything.
Of course, if you're a regular reader of my blog you've already read my post Chronic Financial Illness Part II. As I said in that post, being ill would be SOOO much easier with money. I don't mean winning the lottery kind of money. I just mean having enough money to pay our bills with a little extra each month kind of money. If so, we could pay our bills so my husband wouldn't have to work extra. We could pay someone to come help us each week and/or we could pay someone to come clean our house once or twice a month. That doesn't count how much easier my life would be and how I could probably be healthier if we had the money for the equipment and medications/supplements I need and have been prescribed.
So... I hardly see my husband. We still don't have enough money to pay our bills, besides having any money for anything extra that might make life fun and/or interesting. I am more sick than usual with more bad days than good recently. Things are piling up around here. And, as I discussed in my last post, I don't have friends knocking down my door and the phone's certainly not ringing off the hook (or at all). Not to mention the fact that Christmas is already weighing heavily on my mind. (the weight being the burden of having to get help from a charity just to give our kids xmas presents... which is a huge weight for an independent person like me who hates getting handouts and who has never been "poor" in my life.)
...and that's just the big stuff.
Sometimes I just don't want to do it anymore...
Monday, November 19, 2012
Saturday, November 10, 2012
Tough month
Every now and then I get in a bit of a funk. You can probably tell by my last post that this is one of those times. It usually happens when one, I've been sick a lot recently, two, I haven't spent much time with friends, and three, I don't have anything coming up to look forward to. Of course, number two happens because of number one. (this would be one of those times in which my childlike husband starts giggling and making jokes about peeing - number one - and pooping - number two) When I have mito crashes more frequently, or I'm just generally more ill (my muscles are a lot more weak, I'm fatigued and tired all the time which means sleeping a lot, I'm mildly nauseous all day, and I just have a general ill feeling), I don't get out of the house much or visit with friends. Over the last few weeks, I have had those exact problems. I had a severe mito crash 2 1/2 weeks ago and a couple of mild ones since then. Many of the days in between I have just felt generally ill.
My pain has been a LOT worse over the last month as well. Every time I'm up and around my neck, head, and shoulders start hurting worse than ever before. And it starts up within a few minutes of activity. My pain is normally controlled well, so it's usually kept down to a 2-3/10 on the pain scale. However, recently, my pain has been closer to a 6-7/10. My medications are just not cutting it. There have been many days in which I am in tears by 5 or 6 o'clock because I just can't stand the pain anymore. Every minute or two I'm trying to stretch the muscles in my head, neck, shoulders, and arms. It never helps but I feel like I have to do it.
The pain in my head, neck and shoulders is called coat hanger pain. It's called that because the pain is in the shape of a coat hanger. It is very typical in dysautonomia. Muscle pain is very typical in mitochondrial disease due to muscle weakness. Doing everyday activities is like lifting weights at the gym. So, I don't know why I'm having increased coat hanger pain. There're a couple of likely possibilities, though. My dysautonomia could be worsening and preventing adequate blood flow to my head and neck. Or, my mitochondrial disease could be worsening causing increased muscle weakness, including in my neck, which would then cause pain when I use those muscles. That makes sense right now since my legs have been weaker recently too. It could be a mix of both scenarios. My neck pain is better when I'm laying flat and when I'm able to rest my head against something. I have, therefore, been using the headrest on my wheelchair all the time now. I never thought I would get to that point... at least not any time soon.
In addition to the increased physical problems causing my poor mood, I've been a little down because of the lack of supporting friends at the moment. I have been trying to make new friends with a couple of people I met through the walk who're in the mito community. It has been nice to talk to people who know what you're going through and dealing with. Plus, I feel like I can give something back because I can relate with them as well.
Unfortunately, it takes awhile to build friendships. In the meantime, I'm lonely as hell. I can't get out of the house as much when I'm sick, which I've been recently, as I discussed already. People aren't lining up to come see me or call me either.
Sometimes you just really need a friend to come give you a hug and tell you everything's going to be okay. Sometimes you try to let your friends know that and, despite all the dropped hints and even blunt statements, you still don't hear from anyone.
Sometimes it's just not worth the effort anymore.... any of it.
My pain has been a LOT worse over the last month as well. Every time I'm up and around my neck, head, and shoulders start hurting worse than ever before. And it starts up within a few minutes of activity. My pain is normally controlled well, so it's usually kept down to a 2-3/10 on the pain scale. However, recently, my pain has been closer to a 6-7/10. My medications are just not cutting it. There have been many days in which I am in tears by 5 or 6 o'clock because I just can't stand the pain anymore. Every minute or two I'm trying to stretch the muscles in my head, neck, shoulders, and arms. It never helps but I feel like I have to do it.
The pain in my head, neck and shoulders is called coat hanger pain. It's called that because the pain is in the shape of a coat hanger. It is very typical in dysautonomia. Muscle pain is very typical in mitochondrial disease due to muscle weakness. Doing everyday activities is like lifting weights at the gym. So, I don't know why I'm having increased coat hanger pain. There're a couple of likely possibilities, though. My dysautonomia could be worsening and preventing adequate blood flow to my head and neck. Or, my mitochondrial disease could be worsening causing increased muscle weakness, including in my neck, which would then cause pain when I use those muscles. That makes sense right now since my legs have been weaker recently too. It could be a mix of both scenarios. My neck pain is better when I'm laying flat and when I'm able to rest my head against something. I have, therefore, been using the headrest on my wheelchair all the time now. I never thought I would get to that point... at least not any time soon.
In addition to the increased physical problems causing my poor mood, I've been a little down because of the lack of supporting friends at the moment. I have been trying to make new friends with a couple of people I met through the walk who're in the mito community. It has been nice to talk to people who know what you're going through and dealing with. Plus, I feel like I can give something back because I can relate with them as well.
Unfortunately, it takes awhile to build friendships. In the meantime, I'm lonely as hell. I can't get out of the house as much when I'm sick, which I've been recently, as I discussed already. People aren't lining up to come see me or call me either.
Sometimes you just really need a friend to come give you a hug and tell you everything's going to be okay. Sometimes you try to let your friends know that and, despite all the dropped hints and even blunt statements, you still don't hear from anyone.
Sometimes it's just not worth the effort anymore.... any of it.
Thursday, November 8, 2012
Hopes and Dreams
Hopes. Dreams. We all have them. Right?
Goals. Bucket lists. Plans. Intentions. Purpose in life. Ambitions. Aspirations. No matter what you call it, everyone has them. Or do they?
I don't. I used to have a lot. In fact, I used to have my entire life almost planned out. I knew what I wanted to do with my life. I had plans. I had dreams. I had aspirations. I had a list of things I wanted to do in my lifetime. Well.... not anymore.
Tonight I was sitting in bed talking to my husband. I looked down at my feet and thought, "Man, do I need a pedicure." Now, with the way my brain works sometimes, that one little thought turned into deep thoughts about hopes and dreams.
You see, after thinking that I need a pedicure I realized that I won't be getting one.... ever. At least not if I'm paying for it.
Maybe I should come up with an abbreviation for the parts of my life - PM for pre-mito and AD for after diagnosis. I think I'll stick with pre-mito instead of before mito so the abbreviation isn't BM. I talk about BMs enough in my blog.
So, PM (pre-mito) I would look at my feet, think I need a pedicure, and then think "when things settle down in our lives" or "when our money situation gets better I'll get one."
That goes with anything I would have hopes or dreams about. If I was thinking about traveling to Europe, I would just say to myself "when I get older and the kids are out of the house" or "in a few years when my husband and I are making more money, since we will both slowly advance in our careers."
PM, if we were going through a difficult time financially, I could look toward the future when everything would be back to normal (my husband would be employed, we've paid off our debt, the extra medical bills are gone, etc.). AD, there is no end to our financial difficulties. We can't pay off our debt because we still don't have enough income to stay above water each month. The medical bills are only going to continue to grow as I continue to have more health problems.
PM, I could look forward to riding our motorcycles again after we sold them because we had a baby on the way that was going to keep us happily busy for a couple of years. PM, I could look forward to my next trip to Colorado to hike and enjoy time with a good friend. AD, I can't drive a motorcycle due to my muscle weakness (and we, of course, can't afford one anyway) and I won't be climbing any more mountains in my lifetime.
PM, I could look forward to my yearly raise and a possible promotion in the future because I took pride in my work. AD, there is not yearly raise for social security disability and there's not much I take pride in anymore either.
Maybe everyone is like this, but I always had big dreams. I planned on returning to school to get my masters degree in order to be a nurse practitioner (and double my salary - but that's not the only reason why I wanted to do it). I planned on traveling a lot. I planned on adopting an older child who's been in the system for too long and needs a loving family. I planned on running a marathon and climbing many more mountains.
I had little dreams too... To make enough money to be comfortable. I never wanted to be rich. I just wanted to be comfortable, to be able to drive decent cars and live in a decent house (we reached that goal) and buy our kids the things they need and the occasional things they want without having to figure out where the money was coming from.
Any time I would have a thought like I did about the pedicure, I would just think that it's not always going to be this way and look forward to the future. Things weren't always going to be that way. It was always just a rough patch we were going through. Or maybe it wasn't a rough patch, it was just a time in which I had to put off some of the things I wanted to do for happy reasons as well - i.e. being pregnant. There was always the future.
However, it's different now. Where I used to dream about the future and enjoy thinking about a time when things would be better or different, now I do all I can to avoid thinking about the future. There's nothing there. I don't know how things are going to be next week besides next year or 5 to 10 years from now. All of the things I hoped and dreamed for are impossible now. Whether it's because of money or my health, I'm not going to be able to do the things I have always dreamed or hoped to do.
Many optimists out there are probably saying, "make new dreams" and "you can still find a way to fulfill your old dreams". Well, if you were in my position, you would understand why that isn't true. Make new dreams? I may be sick but my mind is still the same. I still desire the same things. And the second reason why that's not possible is the same reason why it's not possible to find a way to fulfill my old dreams... I don't know what my body's going to do from day to day. I can barely make plans for this weekend besides 5 years from now. This is a progressive disease. Unfortunately, I have seen the progression in the 2 1/2 years since I've been sick.
As I lay in bed thinking about all of the things I would like to do with my life, it occurs to me that I'm too sick to do most of them. Let's just say, for one minute, that I'm not too sick to fulfill some of my dreams. Everything costs money, and lots of it. That is something that we don't have.
So, for now, here I sit. In the present. Not looking toward the future. I have nothing to look forward to. So I push on, day by day. Living each day as they come, just hoping that my disease will not get worse.
Goals. Bucket lists. Plans. Intentions. Purpose in life. Ambitions. Aspirations. No matter what you call it, everyone has them. Or do they?
I don't. I used to have a lot. In fact, I used to have my entire life almost planned out. I knew what I wanted to do with my life. I had plans. I had dreams. I had aspirations. I had a list of things I wanted to do in my lifetime. Well.... not anymore.
You see, after thinking that I need a pedicure I realized that I won't be getting one.... ever. At least not if I'm paying for it.
Maybe I should come up with an abbreviation for the parts of my life - PM for pre-mito and AD for after diagnosis. I think I'll stick with pre-mito instead of before mito so the abbreviation isn't BM. I talk about BMs enough in my blog.
So, PM (pre-mito) I would look at my feet, think I need a pedicure, and then think "when things settle down in our lives" or "when our money situation gets better I'll get one."
That goes with anything I would have hopes or dreams about. If I was thinking about traveling to Europe, I would just say to myself "when I get older and the kids are out of the house" or "in a few years when my husband and I are making more money, since we will both slowly advance in our careers."
PM, if we were going through a difficult time financially, I could look toward the future when everything would be back to normal (my husband would be employed, we've paid off our debt, the extra medical bills are gone, etc.). AD, there is no end to our financial difficulties. We can't pay off our debt because we still don't have enough income to stay above water each month. The medical bills are only going to continue to grow as I continue to have more health problems.
PM, I could look forward to riding our motorcycles again after we sold them because we had a baby on the way that was going to keep us happily busy for a couple of years. PM, I could look forward to my next trip to Colorado to hike and enjoy time with a good friend. AD, I can't drive a motorcycle due to my muscle weakness (and we, of course, can't afford one anyway) and I won't be climbing any more mountains in my lifetime.
PM, I could look forward to my yearly raise and a possible promotion in the future because I took pride in my work. AD, there is not yearly raise for social security disability and there's not much I take pride in anymore either.
Maybe everyone is like this, but I always had big dreams. I planned on returning to school to get my masters degree in order to be a nurse practitioner (and double my salary - but that's not the only reason why I wanted to do it). I planned on traveling a lot. I planned on adopting an older child who's been in the system for too long and needs a loving family. I planned on running a marathon and climbing many more mountains.I had little dreams too... To make enough money to be comfortable. I never wanted to be rich. I just wanted to be comfortable, to be able to drive decent cars and live in a decent house (we reached that goal) and buy our kids the things they need and the occasional things they want without having to figure out where the money was coming from.
Any time I would have a thought like I did about the pedicure, I would just think that it's not always going to be this way and look forward to the future. Things weren't always going to be that way. It was always just a rough patch we were going through. Or maybe it wasn't a rough patch, it was just a time in which I had to put off some of the things I wanted to do for happy reasons as well - i.e. being pregnant. There was always the future.
However, it's different now. Where I used to dream about the future and enjoy thinking about a time when things would be better or different, now I do all I can to avoid thinking about the future. There's nothing there. I don't know how things are going to be next week besides next year or 5 to 10 years from now. All of the things I hoped and dreamed for are impossible now. Whether it's because of money or my health, I'm not going to be able to do the things I have always dreamed or hoped to do.
Many optimists out there are probably saying, "make new dreams" and "you can still find a way to fulfill your old dreams". Well, if you were in my position, you would understand why that isn't true. Make new dreams? I may be sick but my mind is still the same. I still desire the same things. And the second reason why that's not possible is the same reason why it's not possible to find a way to fulfill my old dreams... I don't know what my body's going to do from day to day. I can barely make plans for this weekend besides 5 years from now. This is a progressive disease. Unfortunately, I have seen the progression in the 2 1/2 years since I've been sick.
As I lay in bed thinking about all of the things I would like to do with my life, it occurs to me that I'm too sick to do most of them. Let's just say, for one minute, that I'm not too sick to fulfill some of my dreams. Everything costs money, and lots of it. That is something that we don't have.
So, for now, here I sit. In the present. Not looking toward the future. I have nothing to look forward to. So I push on, day by day. Living each day as they come, just hoping that my disease will not get worse.
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.
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.
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? |
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.
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.
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?
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 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?
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.
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.
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