Friday, August 26, 2011

The Ugly Truth

Face it, the truth can be ugly. I'm in rare form lately. Kids in pain is just heart wrenching. Not being able to take it all away and make it better is a mother's worst nightmare. The fights with hubby at 1 am over stupid, stupid meaningless minutia is enough to push anyone over the edge.

Last Saturday, I ended up in the hospital. Yep, couldn't cope well. It happens. I've never gone in before, but a friend drug me there. My blood pressure was 145/103, and I usually have freakishly low blood pressure. I think I finally did it, I think I had a nervous breakdown.

We are the average American middle class family... we make too much to qualify for drug assistance programs, or any secondary government insurance (Medicaid) but not enough to pay our medical bills and medication co-pays. For years, we just put all meds on a credit cards, knowing one day it would end. I've called drug companies, and if hubby had no job or insurance, they'd give us the boys' medications free. Yes,, FREE. But they have no assistance for those of with insurance and $281 co-pays.

That's the ugly side of chronic illness in a middle class family. Not only do we watch our children suffer from day to day with pain and other medical issues, we have anxiety over how we will pay for the drugs they need. The $281 med protects his kidneys from damage. When he's got 15 other meds to take, the co-pays add up.

The past 3 1/2 weeks have been what I call a 5K period. We racked up more medical bills than hubby makes in a month. We can set payments up with everyone other than the pharmacies.

When you see parents like me out and about at WalMart, Church or around town, you won't know how much our lives suck. We are blessed beyond measure because we have jobs, our kids are alive and we are barely hanging on. No parent will blurt out the truth and say, "Hey, it sucks, we have $45,000 in debt, took out a $22,000 loan on our 401K last year to pay medical bills off, our credit is running out and we don't know if we will be able to pay for their meds next month. It never ends... we already know there will be more bone marrow biopsies in our future...they've each had over 20 so far...... We know there will be hospitalizations and infections that are hard to treat like the recent toe infection. We usually talk about the weather, the music at Mass or some upcoming event.

We may seem normal on the outside. My boys serve at Mass and even the last 3 weeks, other than not feeling well because of the meds, you'd of never guessed that Joseph had a resistant infection on his toe that was spreading up his foot. You wouldn't know he felt awful and was in pain (back, neck, muscle, knee, joint, etc)

We buy meat when it is on sale for $2 or less.... that's what determines what we eat! Once in a while, we splurge and get a roast when it is reduced price.... we took a vacation where we camped the entire time.... with the exception of using hotel points a few nights. When we travel to the hospital we eat PB&J. We drive used cars.... the boys buy their own electronics and even their own rescue pets. I don't drink or do drugs, but I do buy arts and crafts stuff to make cards. I enjoy sending kids cards in the hospital. That is my therapy.... I buy rubber. And then I feel guilty for buying rubber. I try to sell my cards (they never sell, so I give them away as gifts) to help raise money to pay medical bills.

Tonight I am angry with Shwachman-Diamond Syndrome, I am angry with Mitochondrial Disease and I am angry that is affects every aspect of our lives. The system is screwed up and rewards those who don't work. If you have a job and insurance, do the right things by saving, it gets sucked away and here we are...... if Chris quit his job, the Ditropan people would give him J's medication completely free. Yep..... they don't take into account debt to income ratio or medical bills. Ditto for other drug companies...with the exception of possible help from Singulair, they don't have programs for those of us with insurance and kids on a million meds.

Tomorrow will be better. For now, I am angry. God can handle my anger. I know that all things are possible through Him and that He will provide. IO just have to trust and believe, but sometimes, I just get angry because it seems so unfair that my kids suffer so much and we have to make choices to cut their Mito Cocktail doses or pay our mortgage....

Life with chronic illness sucks. Sure, we have good moments, but it sure does suck a lot.

Wednesday, August 17, 2011

The Good, the Bad and the Ugly

The good thing is that we didn't end up with any infections while we were on our first real vacation in years. I feel like the world is getting even with us. I suppose things happen for a reason. I think I had a breakdown of sorts (it happens in my world) and ended up talking to my pastor, my doctor and another priest all in one week. This life isn't always easy to cope with. Many times it seems surreal to me. I don't know how other people cope with having two chronically ill kids. Maybe it was God's way of making me slow down and seek advice. The stress with sick kids never goes away.

Joseph's anxiety and meltdowns affect our entire family. His OCD spikes before any of his procedures and it can make life really quite miserable. It hurts to say it, but it is an ugly truth of living a life with chronically ill kids. We don't live in that elusive land called perfect. Anticipating the stress overload may be just as bad as making it through the stressful hospital days.

For the last three weeks, Joseph has been battling an infection on his toe and we've managed to avoid being admitted for IV antibiotics. Two different antibiotics failed, then we spent time in the hem/onc clinic getting x-rays to be sure it didn't spread to the bone and getting it cultured. The infection spread on the first two antibiotics. Started a new antibiotic Friday and it continued to get worse on Saturday. Our doctor in Cincy asked for the 24 hr culture report, which I forwarded right before we started driving, not thinking he would do anything until our appointment on Monday. Sunday was interesting! I checked my email on the road and had an email to call the doctor on his cell phone. He called in a script and I picked it up in Charleston, WV. He wanted me to pick it up and not wait until we got to Cincy. It is still infected today, but looking much better.

As hospital days go, yesterday was one of our worst ever. The only prayer I could pray was the name of Jesus. Being in the hospital is very surreal. The boys were in rooms that were far apart, I mean, who does that!? Oh, here is a mom with two boys having bone marrow biopsies, let's put them in rooms that are far apart and watch mom run. One nurse even laughed. Joseph went into the OR first. After an hour, I knew something was wrong. The first doctor messed up the biopsy site and they had to call in a second doctor to do a second biopsy. He is extra sore today. Sean is thankfully, doing okay today.

The stress hangovers are hard to deal with. Hard to explain, but anyone with chronically ill kids knows what I am talking about. It is a balancing act, really. Waiting for results and trying to forget the horrid days at the hospital. It is difficult trying to tuck it all away, pretending it doesn't exist and going about daily life as if everything is normal. Showing up at piano, football practice and even Mass is hard. It is difficult to conceal a heart that has been overloaded with stress and anxiety. Somehow, we (hopefully) manage to appear as a normal American family.

My mood today: on the outside everything appears to be normal..... On the inside, it all just sucks.

Tuesday, August 9, 2011

Great Sand Dunes National Park and Preserve

The day we arrived, we set up our camp site and headed to Zapata Falls, which is part of the Great Sand Dunes National Park. The falls are gorgeous! We'd arrived in the early afternoon and knew it was too hot to climb the dunes. The next morning, we got up and made it to the top of the highest dune in the park, a 750 foot dune known as Star Dune.

This was no easy task. Our youngest had difficulty, but we took turns staying back with him, dousing him with water and motivating him to move on.  One of the medications he takes on a daily basis keeps him from sweating like he should, so we always have to be prepared.

On days like today, I try to remember some of the things he has pushed himself to do in the past.  Today is another bad Mito day and he is having back pain, leg pain and just generally tired.  He doesn't feel like he can make it to football practice.  *sighs*  I hate these days, so it is good to look back and remember that sometimes he CAN.

Sean at the top
view of the sand dunes from our camp site

view of the sand dunes from our camp site

another view from our camp site

driving into the park

Sean and Joseph at Zapata Falls

Joseph at Zapata Falls

Chris and Joseph at the falls
Just about to climb the falls

Sand Dunes Camp Site

Sean at Zapata Falls

Joseph at the falls

Climbing the dunes-almost at the top.

Matthew at the top

An exhausted Joseph

Me with the boys at the top

Sean at the top

Thursday, August 4, 2011

The Problem of Pain

No, not the book by C.S.Lewis. We've had some bad Mito days here recently. Joseph has been tripping a lot (he fell down the stairs last night in what he called a "mini fall")and experiencing more pain. It has been a while since he's had a day where he couldn't move or get up from his chair. He's been slow going here recently. Hobbling up the stairs, lying on the floor because he's in pain and keeping his head down on his desk because he is exhausted.

Climbing the Sand Dunes in Colorado was difficult for him. He wanted to turn back. Chris and I took turns hanging back with him, pouring water on him and trying to motivate him to make it to the top. He made it. When we all got back down, he thanked us for sticking with him and motivating him not to quit. It brought tears to my eyes.

Yesterday, we were talking about Currans for a Cure (our team name for the Energy Walk for Life that raises money for Mitochondrial Disease research), and he realized the walk was the same day that he has a football game. He had a small meltdown. He told me that there was no way he could do the walk and then play football. I told him it was a short walk and he said, "You don't understand my pain! If I walk, my feet and legs will hurt so bad I won't be able to play football!"

It is gut wrenching. He experiences pain every single day (doctors believe it is due to the Mitochondrial Disease... (for years his pain (and Sean's) was attributed to Shwachman-Diamond Syndrome, but since the secondary diagnosis of Mitochondrial Disease came along, they now know it is Mito based). It is hard to watch him suffer and not be able to do much of anything about his pain. We can't take it away, we can sometimes make it a little better with medications, but it never REALLY goes away. Joints, knees, hips, legs, back..... chronic pain at the age of 13. Mito also affects many other parts of his and Sean's body, too.

When people see Joseph and interact with him, they would never know how much pain he experiences on a daily basis. They assume he plays football, so he must be okay. Or they assume the pain can't be THAT bad if he plays football. What they don't know is that he has a HUGE desire to play football and motivates himself to play in spite of the pain. Football causes MORE pain. He accepts it, but even I, his mother, have to realize there is a limit-- maybe he can't do the walk AND play football in the same day. *sighs* Those who know him from football will probably have noticed how he tries to keep moving at halftime because if he stops, the pain hits hard.

What he said yesterday was a reminder of the neuromuscular disease he and Sean battle daily. Each one has a different Mito cross to bear. Much alike, but very different, too. Currans for a Cure is walking on October 15th in hopes to raise money to find a cure for Mitochondrial Disease. Right now, Mito has no cure and no real treatments other than high doses of over the counter supplements (and a few prescription supplements) that help a bit, but are not a cure.

Help us... you can become a virtual walker on our team, a real walker on our team or you can make a donation. Please help support Sean and Joseph along with many others like them. You can also like our Currans for a Cure page on Facebook:

Currans for a Cure on Facebook

Wednesday, August 3, 2011

Back from Vacation

Well, we've been back over a week, but I think it takes at least that long to recover from vacation! We went straight into doctor visits and such. I'm hoping to post pictures of our adventures - a day by day journal. We had a great time trekking across the country to Colorado and New Mexico. We even visited a shrine in the first city in Colorado, St. Luis.

It was our first trip in a long time where we did not end up in the hospital somewhere! Joseph was worried about that. He had a bit of nausea, but waited until the day after we got home to start puking. I think he may have thrown up once at our campsite in Colorado.... it is his reflux, not a virus.

We were very proud that Joseph made it to the top of the Sand Dunes. He wanted to turn back a few times and it was a difficult climb for him, but he made it. Once we got to the bottom, he told us that he was glad we'd made him climb to the top... we didn't "make" him, we motivated him and let him stop to rest. We kept pouring water on his head and body (one of his medications keeps him from sweating like he should).

Soon we have bone marrow biopsies and other testing, then it is time to start a new school year.