How My Husband is Doing

I thought about titling this "How My Husband is Actually Doing" because there is the surface-y version and then there is reality.

Or his version. Because anytime someone asks Mark how he is, he will almost always, to almost everyone, say, "I'm good." While I, in the background, shake my head.

Sometimes I have to force myself to not snort at Mark's assessment of how he is. It's absurd to me that he can so easily prattle off the words, "I'm fine", without choking on them.

"How can you say that??", I'm thinking.

Daily Diabetic Complications

No one is supposed to actually come out and say this, but Diabetes is an insidious disease that kills you slowly over time.

Truth.

Even if you take the best care of yourself you possibly can, some complication of Diabetes will most likely lead to your demise.

I don't even want to list all the problems that can crop up because it is too long and depressing. Quite commonly, Diabetes is the leading cause of blindness and kidney disease, two terrible and permanent afflictions.

I married a man with Type 1 Diabetes and over the years have been watching it take its toll on him. It actually started its rampage in Mark before I met him. He was diagnosed at age 9 and by 25 he was legally blind, was losing kidney function and neuropathy had begun in this feet. Once his kidneys failed he was blessed to receive a kidney and pancreas transplant which commenced a six year reprieve from Diabetes (and dialysis).

How I Feel About Doing a Charity Walk

My husband is a Type 1 Diabetic (juvenile onset/insulin dependent) and has been since the age of nine (he's almost 46). He suffers from many of the complications associated with the disease, including kidney failure, for which he has been on in-center hemodialysis for the last 12 1/2 years.

And that ain't even the half of it!

Over the 20 years we've been together I've had myself quite the education on Diabetes. Heck, I even had Gestational Diabetes (very similar to Type 2) in both of my pregnancies.

But I've also built up a bit of a hard heart and even bitterness toward the idea that the "powers that be" could actually be trying to find a cure.

To me it feels like Diabetes is thought of as just a "condition" MILLIONS of people have to "deal" with, it's completely manageable and "if you just keep your blood sugars in good control you'll be fine".

I hate to burst anyone's bubble, but that simply hasn't been what I've observed about the disease.

Admitted to the Hospital

It may seem silly for me to think about blogging when my husband has just been admitted to the hospital to treat an infection....

The thing is, he and that are a huge reason why I blog. It is my desire to blog my way through the craziness that is Mark's chronic illnesses. For me/us and for others. It's our story, our journey.

So I will keep writing.

Not My Favorite Cause

Finding a cure for Diabetes is not something I typically get fired up about.

I tend to feel bitter about the chances of anything ever actually happening on that front, so I choose to care about other, more tangible, things instead.

Then my daughter wrote a short essay on who her role model is. She named her dad, and that she'd like to do something to help find a cure for Diabetes. It made me think.

And my heart softened a bit. If my child cares about something, I do too. I can't not be supportive of my children's hopes and desires. "Supportive" is probably one of the top three things moms are.

I could never in good conscience squash Camryn's idea that she might be able to help in some way. I can't say, "There's no use, dear, it just won't happen. Forget about it."

You don't take away a person's HOPE, no matter what you think.

Well My Week Was Crap

I want to tell you....

I/we have not had a week as crappy as this in a long time. The "when it rains, it pours" kind.

I should be grateful things haven't been so frustrating in awhile though, hu?

OK, one thankful list item checked off!

And I suppose I should be grateful no one died.

Two thankful list items. Check, check!

Actually, that's not entirely true. Sure, everyone near and dear to me is still breathing, but my friend's mom did pass away on Tuesday. Which totally sucks for her and I care about her so I feel bad.

Now that I think about it, something did die: my husband's fistula.

A fistula used for hemodialysis is a direct connection of an artery to a vein. Once the fistula is created it is a natural part of the body. This is the preferred type of access because once the fistula properly matures and gets bigger and stronger; it provides an access with good blood flow that can last for decades.

Mark has had a badass, perfectly flowing fistula for 12 years. He has had no problems with it until now. It is the one thing that hasn't gone wrong for him in the last 12 years of being on dialysis.

Adding that to the thankful list! That's three things now, right?

But literally overnight, it shut down. Clots, calcification, what-have-you. Done.

This happened Wednesday morning after he already had a truncated dialysis treatment on Monday, coming off his 2-day stretch over the weekend. Monday's treatment was interrupted by tummy trouble.

Thankfully, he was able to get in for a make-up treatment on Tuesday, otherwise he would have had to be admitted to the hospital come Wednesday and still no dialysis.

Fourth thing to be thankful for! I guess.

Everyone scrambles and Mark gets in for a "fistulagram" Wednesday afternoon. This is similar to an angiogram and angioplasty they can do for the heart. But no dice. It's gonna need surgery.

So the outpatient surgery folks put a Quinton catheter into Mark's chest and schedule operation fistula-fix for the next morning.

I was thankful they went ahead with the catheter, kicked him out of the hospital without much fuss and his dialysis clinic was able to get him in for a 3-hour treatment that night.

Three more things to be grateful for! We're up to SEVEN now!

So you know how you're not supposed to eat or drink anything after midnight before a surgery? Well, that can be kinda tricky for a diabetic. In the interest of preventing a low blood sugar, Mark had a snack before bed and didn't give himself any extra insulin.

Turns out, his blood sugar decided to go high. This is apparently a good reason NOT to proceed with surgery (something I did not know). Mark took some insulin, but his sugar wasn't coming down quickly enough and we missed the window of opportunity with the surgeon. Surgery cancelled. Go home. Until next week.

The day before they practically threw us out of the hospital. Now, notsomuch.

Do you have any idea how thoroughly frustrating waiting for NOTHING to happen is? I think my dad wanted to punch somebody.

I whined for people to entertain me on Twitter. And they did!

#8 thing to be thankful for.

When we finally got home I checked the mail and found three letters from a certain government entity that has to do with providing benefits to the elderly and disabled. One of which was incomplete. It said there was something they needed to tell me, but then didn't. Weird. The other two said they are cutting our children's portions in HALF.

The hell you say??

Nothing, nothing, absolutely nothing has changed with any of this in YEARS. I couldn't even remember the phone number to call them because I haven't had to in so long. My and Mark's disabilities are so etched in stone at this point there should be no questions.

Yet some bureaucratic asshat has decided to screw with our stuff! And I had to sit on hold for an HOUR trying to get some information.

Which, you know, is exactly what I wanted to do after spending a completely pointless several hours at the hospital with my husband who is having thing after thing after thing go wrong for him this week, thus the same things are going wrong for me as well only in a different way.

*Heavy fucking sigh.

Oh, did I mention that my son's school bus came a couple minutes early Thursday morning so he missed it and I had to ask my sick friend to take him for me?

AND, I think my daughter now has the strep throat her brother has had.

This has been my week, folks.

I'm all sorts of pissy, but right in the middle of everything I got emotional about the wonderful people in my life. I posted on Facebook:

I am so very grateful for the amazing support system we have! It is so awesome to know that there are people I can call whenever I might need some help. Today Jessica took us to the hospital, my dad came from work and Carin picked us up. Tomorrow morning my dad will take Mark back for the surgery. Every single thing done for our family is seen and appreciated. <3

Nine things on the thankful list!

Of course all of this is making me feel so anxious and insecure about my upcoming birthday trip with my BFF. What if things continue on this track and I shouldn't leave? What if the bureaucratic crap means I can't afford it? What if, what if , what if....

I need a 10th thing to be grateful for....oh I know! K-cup packs for five bucks! Yup, that'll do.

I have hated this week, and I'm not sure next week will be any better since Mark still has to have that surgery. But I know my sense of humor and ability to be thankful for even the smallest things will get me through.

And that's what I really wanted to tell you.

My Daughter's Role Model

My daughter recently wrote an essay for her Health class. At the time she wrote it, she didn't share it with her dad and I. Last night she remembered, pulled it up on the computer and told us to read it.

It got us both a little emotional, and sparked an idea. Here, read it for yourself.

__________

My Role Model

by Camryn

My role model is my dad because he is diabetic. The reason my dad is my role model is because diabetes can be scary. I don’t want any kid to go through their life with one of their parents being diabetic, or the kid being diabetic

My dad is my  role model because he influenced me to be someone to help find a cure for diabetes. My dad was diagnosed with diabetes when he was 9 years old. When my dad gets low it gets scary and we have to give him sugar. Sometimes when he has to go to dialysis, and its like maybe 6:00 and he’s still sleeping, that’s when my mom tries to wake him up. when he’s being difficult she has to either give him glucagon or call 9-1-1.

What inspires me to cure diabetes is because when I was in 6th grade…my dad's heart quit. He’s lucky to still be alive right now. My dad works at the Home Depot, and when his heart quit, Home Depot and our friends helped us A LOT.

On how I can apply his positive characteristics on my life, is when something bad comes up, then I can try to make things better. What I can learn from my dad is to never give up. Even on the darkest days, my dad didn’t give up when his heart quit. So I’m not going to give up on trying to make him better. I think I will be a role model to someone someday because of what I did to try to cure diabetes.

If you are someone who has diabetes, or know someone who has it, I know what you are going through. I hope I will be your role model….and you might be a role model to someone. I am someone who wants to help! And I plan on helping anyone who needs it. I think everyone should donate to help cure diabetes. Diabetes is tough to go through, and nobody should go through it without a little help.

__________

OK so, two things:

First, we didn't know Camryn had these thoughts and feelings. One of the things we struggle with most with her is that she isn't very good at verbal communication. Never has been. She was slower than other toddlers to talk. She is more likely to have an emotional meltdown, or on the flipside, a giggle fit, than to simply TELL you how she feels, what she needs, etc.

There is an idea I heard (or read) about awhile back. It was about how to keep the lines of communication open with your teen. Since Camryn wasn't yet a teen at the time, I just kind of filed away in the back of my mind.

The idea is to have a notebook that you and your kid can pass back and forth. After reading this essay, I am convinced she will communicate with us better if she can write it.

source

Second, wanting to cure diabetes.....yeah. Well, here's where I need to make a confession. I am very bitter on that subject. I pretty much have no hope for that to ever happen. My hate for the disease is so deep, and I carry immense cynicism in regards to the idea that anyone even WANTS to cure it. I have the very callous, I guess you could say conspiratorial theory, that "the powers that be" love the profits they incur from dispensing diabetes management products so much that no one is actually trying to cure the disease.

But I'm not so hard over about it that this touching essay by my own daughter can't soften my attitude just a bit, and be encouraging to her if that is something she cares about. If Camryn would ever like to fund-raise in some way, maybe do a walk for diabetes....well I will be right there with her. How can I not?

A little update: When I wrote and published this I had no idea that November is #DiabetesMonth with the American Diabetes Association. I mean, since I don't really believe in a cure, why would I pay attention to such things? Anyway, serendipity!

Medical Emergency Preparedness for Kids

My two children, currently aged 13 and 7 1/2, have a dad who is a Type 1 Diabetic. He also has End Stage Renal Disease (ESRD) requiring dialysis, as well as a heart condition which necessitated he be given an Implantable Cardiac Defibrillator (ICD).

Phew! Lots of big words. Details for adults, really. All kids really care about is that Daddy has health problems and sometimes he has to be in the hospital. Also, sometimes at home, we have to call 911.

We recently got our daughter (the teenager) into counseling. We thought to help her better manage her ADHD as pertains to school. Not surprisingly, Camryn spoke to her counselor about her dad too.

The counselor told us that Cami has some anxiety about dealing with something happening to her dad when I'm not around. Like if I go out with friends, or if she goes out with my husband to run errands.

Camryn likes to go out with Mark just the two of them because she gets to sit in the front seat. That, and I think she genuinely likes to be helpful to her dad.

The counselor suggested that we could help alleviate Camryn's worries if we all sat down as a family and discussed exactly how to handle possible medical emergencies that can come up. Not only to discuss, but also come up with PLANS. Or specific instructions.

Obviously that's something we should do. I mean, of course, right? Sometimes you don't know if something is a good idea until an outside source points it out.

So we did it! I typed up an instruction sheet, and then the four of us sat down and discussed it.

Here is a generic version* of what my kids now have copies of:

**********

KIDS: If You Need to Help Dad On Your Own

Low Blood Sugar - At Home

If Dad seems weird, suddenly yawning a lot, not finishing sentences, getting sweaty, begins acting kind of goofy or loud, or if he’s sleeping and you can’t wake him up, maybe his blood sugar is low.

Try to talk to him. You’ll know if he’s not responding to you well. If he is low, but not too bad and it looks like he can take car of himself, offer to help, but otherwise let him. If he is really bad off, do the following:

1. Try to find and suspend his insulin pump.
-Once found (should be in a pants pocket) suspend:
Press ACT
Press the DOWN arrow once to highlight SUSPEND
Press ACT again, and then one more time (pump will vibrate 3 times)

2. Call me. ___-___-____. If I answer, I will try to help you help him. If I don’t answer, go on to #3.

3. Grab a phone, any phone, and dial 911.
- Tell them what is happening, that your dad is Diabetic and you think his blood sugar is low but you can’t help him.
- Our address is  __________________________________.
- They will give you instructions. Follow them.
- Firefighters or paramedics will come and help Dad and he’ll be OK.

Something Else is Wrong - At Home

If Dad is unconscious (eyes closed, you can’t wake him up) for any other reason that does not seem to be low blood sugar, just call 911 right away. Then call me.

General Instructions

If you can ever not reach me, here are some other people to try:
______________ at ___-___-____
______________ at ___-___-____
______________ at ___-___-____
______________ at ___-___-____.

You can go get a neighbor you feel comfortable with. BE SURE NOT TO LOCK YOURSELF OUT!

(If it’s AJ who is here alone, or if either of you need to tell someone, Camryn’s phone number is ___-___-____.)

Low Blood Sugar - While Out
If you’re in a store or any business with Dad, grab him a snack or drink, &/or try to ask someone who works there for help. You can try to fish Dad’s phone out of his pocket and call me.

Some Other Emergency - While Out
Try to get Dad’s phone and call 911, look around for a woman who can help you, call me.

Try to not be scared. Try to stay calm. There is always a way to get help.

*If interested, HERE is a link to a Google Drive copy of the above. If you have a similar situation to ours, you could use ours as an example, but customize it to your specific circumstance.

**********

The reality is that my kids' dad could have a serious medical emergency at any time. This is something I felt was best to do for my kids. Other families may handle it differently. Obviously, the older they get, the easier it is to educate them about these things.

For now, I feel a little better knowing we've talked about it all, and maybe they feel a little more empowered.

How Irritation and an Insulin Reaction Turn Into Gratitude

My husband had a nasty insulin reaction last night. He hasn't had any so bad in quite awhile. He was alone downstairs after we put the kids to bed. I was upstairs in our bedroom watching Grey's Anatomy and Scandal, drinking a cup of hot chocolate and trying to get over how thoroughly frustrated I was with how our evening had gone.

I'm seriously more irritated than I've been in a long time, and to top it off, I'm sitting in a squeaky fucking chair!
— Jennifer Hall (@JenAnnHall) October 25, 2013

I was up there thinking how happy I was to just BE, me and the TV, and that yummy cup of hot cocoa. The stress of the evening was slowly melting away as I lost myself in my favorite shows....

It wasn't until the first commercial after Scandal started that I decided to run downstairs with my empty I Love Bon Jovi mug.

Mark was lying on his back in the middle of the living room floor. This isn't actually unusual of him; he often decides he would prefer the floor to the couch. So I wasn't immediately alarmed. But then I said something to him and he only half-heartedly mumbled. Still, I thought maybe he had just dozed off. Remember, his blood sugar hadn't gotten this low for quite awhile, so that wasn't really on my radar.

Then Mark made some other sort of noise and as I moved closer to him I saw that he was extremely sweaty. Then I knew.

I fumbled to retrieve his insulin pump from his pocket. I suspended it and got a cup of yogurt from the fridge. I was able to feed him the yogurt pretty well. I got another one, but he had laid back down so I waited to see if the first cup was going to help enough to make him more coherent. After several minutes, I could see he wasn't getting any better, so I decided to give him a shot of glucagon.

I know that will make him better, so I just sat on the couch and waited. After a few minutes he sat up.

I asked, "Are you feeling better now?"

He replied, "I guess." And then, "I'm sorry."

Mark often apologizes when something happens with him. It breaks my heart. He says he's sorry I have to deal with it. Well, yeah, I am too, but....I love you.

Somehow this segues into gratitude. Because I am grateful for....

1. My knowledge of Mark's Diabetes and how to help him.

2. Glucagon injection kits that I can be assured will fix him right up when food or drink isn't an option.

3. My earlier mood not being even an iota of a factor as I went into "help Mark mode".

4. Mark's body being so darn strong in spite of all it has been through. I don't even know how it's possible. None of us do.

5. My cat to keep me company while I fret. Cats may have snooty tendencies, but they know when you need them.

Know what else?

6. The ability to pause my show while my husband has an insulin reaction.

7. The store still had the Halloween costume my daughter had her heart set on.

8. Cheap candy buckets for only $1 because costumes are not cheap.

9. Nonfat frozen yogurt.

10. That I'm smart enough to figure out why my new blog header was blurry and how to set my old URL to redirect to my new one. That last part was a big relief!

When someone else is going through something you've gone through

Your ability to feel real empathy is triggered.

I'm experiencing this right now as one of my best friend's brother-&-sister-in-law prepare for a living donor organ transplant. My friend's husband's brother will receive a kidney from his wife.

The circumstances are very similar. Steve is an insulin dependent diabetic who has many of the same complications Mark does. Retinopathy and kidney disease are just two. Steve and his wife Tiffanie are also young like us (ish).

I've not personally given my husband an organ (would that I could!), but Mark and I have been through the transplant process (cadaver donated). The myriad appointments and tests, waiting on pins and needles for the go ahead, preparing for surgery, waiting through the procedure itself, learning the hospital like the back of your hand, getting to know your new best friends called nurses, watching lab results like a hawk, getting used to the effects of immunosuppressants, cheering for urine, doing laps with an IV pole around the transplant floor. The fear and worry. The giddy excitement and pure joy upon hearing the transplant was a success.

When Steve and Tiffanie came down (they live in Alaska) for a consultation with the transplant team back in April, I got to sit down and talk with Tiffanie. I felt an immediate connection through shared experiences with our husbands. And our feelings about those experiences. There was so much head nodding. I knew we had to be connected so I friended her on Facebook right away, and subsequently asked my friend about how Steve and Tiffanie were doing every chance I got.

Now that they're here preparing for the actual transplant I find myself feeling nearly as anxious, ansty, nervous and concerned as I would be if it were Mark. They've hit a road block with an infection that must be treated before the transplant can be done, and surgery has been postponed for two weeks.

Of course they are keeping their chins up and staying positive, but I know the frustration that is also there. When things like this happen it becomes so hard to see the light at the end of the tunnel.

One might wonder if I'm jealous at all. I am not. I am rooting for them with everything I've got. I am so excited that they are able to do this, and that Steve will be healthier. It's not as if Mark hasn't had this same opportunity before. The fact that his transplanted organs (kidney and pancreas) stopped working after only six years is no one's fault.

I could never begrudge anyone who is able to receive an organ transplant that enormous gift and blessing. I want it so badly for anyone who needs it, and I feel very frustrated, no angry, when someone loses their life because they didn't get one. Like our friend Cindy who recently passed away waiting for a liver.

I can empathize with Tiffanie's thoughts, feelings, motives and fears where the health of her husband is concerned. Beyond that, however, I am in awe of her sacrifice of one of her own kidneys in order to improve Steve's quality of life. She is a strong and determined woman and I admire her.

I find myself getting emotional about it, actually. I started this post hoping I could explain why, but I keep finding myself stunted in finding the words. Suffice it to say, I -- Mark and I -- GET IT. All of it. On so many levels.

I cannot emphasize enough how important it is for each and every individual without some sort of pre-existing condition to be a registered organ donor! Not only that, but to keep an open heart and be willing to donate a loved one's tissue and organs if ever presented with that choice.

Everyday Heroes

My husband Mark has Type 1 Diabetes. He is insulin dependent, has been since the age of 9, except for a six year pause while he had a healthy transplanted kidney and pancreas.

Being insulin dependent is a super tricky thing to try to manage. Add in kidney failure, dialysis and all the meds Mark has to take and some mis-guided antibodies..... Well, let's just say it's hard.

Mark's year long avoidance of the hospital was recently upset by a very high blood sugar, or hyperglycemia. But more often, he has HYPOglycemia, or low blood sugar. When his blood sugar got very high, he needed the hospital. When his blood sugar gets low, I or whomever he's with, can usually simply get him something to eat or drink and he'll be alright.

The worst "lows" occur when his blood sugar bottoms out when he's sleeping. When Mark is asleep, he often doesn't feel his sugar dropping. Or he does, but is too confused to do anything about it.

Over the years I seem to have developed a kind of sixth sense, if you will, with regards to Mark's sugar getting low. I am able to pick up on early cues that might mean he needs to eat. He'll start yawning a lot, for example. Perhaps we'll be talking and he'll not be able to complete a sentence. Or his speech and manerisms will become louder and more exaggerated.

When we're both sleeping, however, it is a lot more difficult for either of us to know. Yet, even in his sleep, he lets me know some way or another that he needs help.

Every once in awhile -- a few times a year, I'd say -- something Mark is doing in his sleep will wake me up, I'll see that he's not OK and try to help him, but I can't.

It could be that I can't wake him up enough to sit up in order to drink something. Or maybe I can sit him up, but he's too out of it to consume something. Sometimes he looks at me and says no. It doesn't make sense, but making sense in the middle of a severely low blood sugar -- in the middle of the night or very early morning -- is not really a reasonable expectation.

There are these handy little injection kits called glucagon that will save the day.....if I have one. If I don't, I'm left with no other alternative but to call 911.

It's both difficult and a relief to dial the numbers and explain why I need help. I try so very hard to not need to bother the fire department like that. I do everything I can to help Mark myself, calling for help only as a last resort.

My step-father is a retired firefighter. They train to put out fires and to help with the biggest and scariest of events, yet most of their calls are medical. I can't help but think about how boring it must be for them to deal with another diabetic's low blood sugar.

Yet they come into my home and make me feel like they are glad I called, that my problem is important to them and they want to help.

As soon as they walk in the door I know Mark will be OK. They know exactly what to do. They ask just the right amount of questions and set about doing their job. They put me at ease and I trust them completely.

Whenever a tragedy strikes we see what first responders are capable of. Their diligence and bravery are impressive and we stand and applaud them. We call them heroes. As we should.

To me, though, they are everyday heroes. I thank them and they apologize. Apologize! For trampling through my house or that I needed to call in the first place. They are kind and not the slightest bit impatient or condescending. They give my kids little dalmation plush toys or plastic firefighter hats. Once, my daughter was inspired by seeing a female firefighter come in to help her dad.

They are my personal back-up and I am so grateful for them. Grateful to not be made to feel like a bother or nuisance.

THANK YOU, Firefighters/Paramedics/EMTs!

Linked with Pour Your Heart Out.

Evolution of Love

Train of thought:

Watching a commercial for football....former players who are commentators now...shown walking down a hallway....thought it looked like they all walk funny....

Remembered that the way Mark walked when I first met him was something I found attractive -- I liked the way he carried himself....

But now, with his advanced diabetic neuropathy....he doesn't walk like that anymore.

Felt sad for a moment. Mostly for Mark. I recognize that I don't love him any less because he doesn't walk the same. In fact, I love him more today than I did then.

__________

I believe love evolves over time. It changes. Morphs. Begins as one thing, but becomes something different.

I get frustrated with what seems to be a lack of understanding that relationships should and do change. You know, the typical, "he's never romantic anymore" kind of thing.

What I've learned is that friendship is the foundation of a good marriage. You need to not only be in love with that person, but actually LIKE them too.

Like being around them. Like living with them. Enjoy their company. Find them interesting, funny, inspiring....worth sharing your life with. And genuinely want the other person to be happy.

Even when it isn't awesome. Or perhaps, especially when it isn't awesome.

Before I married Mark, while thinking it all through, and in order to help me know for certain that we were doing the right thing, I asked myself, "Do I want to break up with him? Or do I love him and want to be with him?"

I did not want to break up with him, I loved him and wanted us to be together. The idea of not being with Mark made my stomach do flips and tears prick my eyes.

So I felt I was ready to marry him.

Fast forward 14 years, two children and a slew of experiences later, and I realize the things that initially attracted me to Mark are not why I still love him today.

Like, not at all.

In fact, we are both pretty different from the day we met 18 years ago. And we should be.

What is the trick to growing and changing within a marriage?

I have my theories. Things like the big "C" -- communication. Always trying to balance time together with time apart, respecting each other's interests and doing the little things. I'm sure our many struggles that have bonded us are important too.

But when it comes down to it, I don't have the answers. All I know is what works for us.

And that Love evolves.

Did You Know? About Dialysis

When I tell people about my husband's health problems, I notice there seems to be little knowledge of End Stage Renal Disease (ESRD) or Chronic Kidney Disease (CKD), aka kidney failure, and dialysis treatments.

(Please keep in mind that I am not a medical professional. My perspective is that of the wife of a man on dialysis for the last 10 years.)

According to the United States Renal Data System (USRDS), "1 in 10 American adults, more than 20 million, have some level of CKD". The most common causes of ESRD are diabetes and high blood pressure.

Mark was diagnosed with Type 1 Diabetes just after he turned 9 years old. By the age of 25, when I met him, his kidneys were functioning at about 20-25%. About a year and a half later, he needed to start dialysis.

The main job of the kidneys is to clean wastes and extra fluid from your blood.  If your kidneys fail, you will need dialysis or a kidney transplant to live.  These are treatments to help replace the job of the kidneys.

Dialysis is the artificial process of getting rid of waste (diffusion) and unwanted water (ultrafiltration) from the blood. This process is naturally done by our kidneys.

People in kidney failure cannot filter toxins from their blood and cannot produce urine. Thus, toxins and fluids build up in the blood stream. This makes one feel run down, sluggish, achy, bloated, and can cause shortness of breath and nausea. Someone whose kidneys have failed will die if they do not receive treatment. ESRD is considered a legal disability.

There are two main types of dialysis -- hemodialysis and peritoneal dialysis. Hemodialysis involves being connected to a machine which removes, cleans and returns the blood. Peritoneal dialysis involves using a sterile solution rich in minerals and glucose inside the abdominal cavity where the peritoneal membrane acts as a filter.

When Mark first needed to start dialysis, he chose peritoneal because it affords much more freedom to the patient since it is done by the patient at home. It is a great option. However, it turned out not to be the best option for Mark. He was not getting adequate treatments and just got sicker and sicker. Unfortunately he did not have a very good doctor at that time and this went on for 4-5 months before it was determined that Mark needed to be on hemodialysis.

Fortunately, it was only about another month before he received a dual kidney and pancreas transplant (Easter Sunday, April 7, 1996) at UCSF. Mark's transplant was successful treatment for six years before the organs rejected. He returned to being insulin dependent and on hemodialysis in February 2002. He is on the transplant list at UW, however his first transplant caused his body to create antibodies to the majority of the population, making him a difficult match. Also, his heart problems have forced UW to have Mark bounce back and forth from active to inactive several times. Your heart needs to be strong enough for the transplant surgery.

Dialysis is essentially a form of life support. Many people have chosen not to receive dialysis treatments and let their condition take its natural course, meaning death. Further, many people skip treatments regularly. Mark and I cannot understand why anyone would want to skip dialysis and make themselves feel crappy. Dialysis doesn't replace normal kidney function as it is, and the constant up and down imbalance of electrolytes causes complications (such as Mark's heart problems). The need for dialysis is not something to take lightly. Mark has NEVER skipped a regular treatment at his clinic, unless he was in the hospital, and then they dialyze him there.

Being on in-center hemodialysis is equivalent to a part-time job. The usual schedule is three times a week for about four hours, which equals twelve hours every week. Mark does this, plus an extra treatment on Saturdays, equaling 16 hours a week.

Several years ago I read an essay a dialysis social worker wrote. She decided that in order to better understand the patients she needed to better understand what a dialysis treatment is like. With the help of the techs and nurses in the clinic, she performed an experiment on herself. She sat in a dialysis chair for four hours, with the lines taped to her arm. She simulated the fluid load by having bags of saline placed all over her body, and then slowly removed as her "treatment" progressed. She thought she could read a book, but her tethered arm made that difficult. She closed her eyes and tried to rest, but the beeping alarms of the machines kept waking her up. All in all it was a very frustrating experience and she came away with a new-found respect for dialysis patients.

If you've managed to get through this entire post, thank you. Now you know more about what dialysis is like. Knowledge is a good thing.

I can't close without also pleading with you to become a registered organ donor. I believe it is our moral obligation to let doctors have whatever parts of our bodies they can use to help others after we die. Do you know they can use everything from skin to organs to the corneas of the eyes? There are so many people waiting for organs, my husband being only one. You can also donate parts of your body while you're still alive, such as blood, bone marrow, a kidney and part of your liver. Imagine being able to save a life! The key is to make the decision, and then tell your loved ones about your decision. They need to know because they will have to make the final decision for you.

OK, off my soapbox! Again, I thank you for reading this.

Question Me (Did You Know?): About the Tough Stuff

Welcome to the fourth and final installment of my answers to the questions you asked me for my blogoversary! Phew. That was a big sentence.

This one is doubling as my Did You Know? post for June. Cool? Cool.

Did you know I saved the tough/deep questions for last? Well I did.

::

1. Do you ever wish you hadn't married a diabetic?

Whoever asked this question has balls! Because you could easily offend with a question like this. I, however, am not offended. On the contrary, I think it's a very valid query, all things considered. And I can't say I've never thought about it.

What I wish is that Mark wasn't a diabetic. I never for one minute wish I hadn't married him.

Yes, Mark came with health problems, it's hard and I could lose him. But that's all just....but not just....like, what's on the outside, or a piece, of it. I wrote in My Husband is Enough that Mark is not defined by his poor health, that it's a part of who he is, not the whole of who he is.

Mark is an insulin dependent Type 1 Diabetic on dialysis with heart problems. But he's also a good husband and father, a cooking, music loving, motorcycle riding, gun toting, sarcastic, loyal, faithful man with a great sense of humor and positive attitude. I would be missing all that if all I could see was his Diabetes.

I was meant to love him and marry him. However it turns out.

YouTube video

2. What has been the absolute worst thing about your sight issues?

Two things, I think. The first is not driving. I gave up the great public transportation in the Bay Area when we decided to move to Washington and I do feel it. Most especially where my kids are concerned. I hate it so much when they have to miss out on something because I can't drive them and it falls at a time when their dad can't do it either. They are good kids who seem to understand and don't get too upset about it. But I still feel bad.

The other thing is when I look like a bumbling idiot. I was a little embarrassed when I met Danielle at motherhood: TRUTH because I kept bumping into her and Jessica, and couldn't see a thing in the restaurant (goddamn ambient lighting!). I couldn't see where to put my water and I groped Jessica's hand because I thought she was holding something. At one point I said, "I swear I'm not usually this blind!"

Also, I wonder if fast food employees think I'm illiterate when I ask about something that's probably clearly written on the overhead menu THAT I CAN'T SEE. I have such a hard time asking even those I'm with to read something for me. It makes me feel stupid and I hate it. This is where the grey area that is my vision is difficult. If I were totally blind it wouldn't be an issue. But because no one knows what I can and can't see, it gets confusing. Of course I prefer the vision I have to the alternative, though.

3. You have talked very candidly about the things you are facing in your life. Many of us out here find you inspiring. Do you think of yourself as inspiring/strong or are you "just doing what you do"?

If sharing the ups and downs in my life is inspiring in some way, I would love to own that. What one person finds to be inspiring another may not, so perhaps it depends on the reader? I am just doing what I do too. This is my life; these are the cards I was dealt. I either live it or shoot myself. Right? Doesn't mean I enjoy the hard stuff. But I can't change it. All I can do is take each day as it comes, put on my big girl panties, not sweat the small stuff, express myself and let the love flow. If what I put out there is inspiring, that makes me really happy.

Am I strong? Yeah, I think so. For the most part. Mark and my children have made me strong. I also have some great friends and family. I'm not living my life in a vacuum. I am so lucky to have some other strong people who are there for me.

I may be able to draw on some inner strength, but I still cry. I cry hard. I get frustrated, irritable, and I get down. I have bad days. I ask why, like a lot. The thing about that is, I listen for the answer. I believe an angel whispers an answer in my ear every once in awhile. Being open to the unknown helps. That sounds like it might not make sense. But it does to me.

4. Where do you see yourself in 5 years?

Hahahahaha! Oh, thanks for the laugh! I have no freaking clue!

But seriously, my mother recently gave me a book called The Gift Giver. It's a memoir written by a woman (named Jennifer) who lost her husband suddenly (named Mark), and the conversations she says she had with her husband from the great beyond.

At first I was all, really mom, you want me to read a book about a woman losing her husband and they have the same names as us, right now, shortly after almost losing my own husband, amid the continuing fear of if/when that will happen?

Yeah.

But I was intrigued by the message my mom hoped I'd get from the book. And although it was a difficult read, I did get it.

There are two passages from that pertain to the question I'm trying to answer here. The author writes that her dead husband told her:

"Life is meant to be lived in each moment. You need to live in the moment--not in the past, not in the supposed, lost future."
and
"The only thing that you need to do is see, smell, touch, taste, listen, and feel your feelings. That's all. Do those things and you will live an extraordinary life. It's that simple."

After reading the first quote, I realized that Mark (mine) knows how to do that. He's always known how to be in the moment. Here's an existential thought for you: it's probably because his soul knows he isn't meant to live a long life.

I was somewhat astonished to read the second quote because that is what I have always felt to be true about life. That everything else is much less important than the seeing, smelling, touching, tasting.... Actually, this reminds me very much of the movie City of Angels, which I have written about here, long before I ever read this book. This is all very deep and profound to me.

So what I'm saying is, my husband has taught me to live in the now. As much as my brain will let me. I have had to learn to do what feels right in the moment. I have had to accept that planning for the future may be pointless.

All I can know for sure about five years from now is that I will be 43 years old (the age Mark is now) and I will still be a mom. Beyond that, as I've been saying and will keep saying, I am open without expectation.

Danielle and I host this blog hop the first Tuesday of every month.

Play along with us!

Question Me: About Kids

Here is the third installment of the questions you asked for my blogoversary. It's the third post and there are three questions....about kids!

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1. Do you wish you could have just one more baby?

Sure, I wish I could....but I'm totally OK with not. I feel extremely blessed to have been able to have the two I have, considering my husband's health. Diabetics often have a hard time with fertility. When we decided to try for our first, Mark was doing well with his transplant, and it took us only 2 months to conceive. But the second time we tried, Mark no longer had his transplant and it took 6 months. Not a huge difference, but still noticeable. The kicker is that I had Gestational Diabetes in both pregnancies. Seriously? So ironic.

I always wanted more than one child. I got two. Would have loved to have three, but honestly, that ship has sailed. Mark's health declines a little more each year, and I'm on the down slope towards 40. If circumstances had been different, maybe we'd have three....

2. Are you excited for the day your kids are old enough to drive you around?
...or scared?

Both? Of course I've thought, "hey, my kids can drive me around someday!", but it's not like I'm waiting with bated breath for the day to arrive. I don't really know if I'll want them to drive the moment they turn 16, and I honestly have no idea where they're gonna get cars. Guess they better plan to get jobs too!

And I'm always scared in cars. I have no control! So I bet I won't be any more scared with them than I am with anyone else. At least with my kids, I can justify yelling at them!

3. Will you want your kids to live with you after they turn 18?

I don't know if want is the right word, but I have a feeling I wouldn't mind it. I don't think I will be one to be anxiously awaiting the day my kids get the hell out of my house!

Pretty much, I don't want them to move out until they're ready. I want to feel, and for them to feel, that they can take care of themselves, that they have the skills and resources to do so. Now that's not to say I want any "failure to launch" issues! I just think I am their mom and with me is their first and forever home. I want them to know they always have a soft place to land, without taking advantage of it. Hopefully I can pull that off!

I am currently anticipating the next chapter of motherhood: having both kids gone to school 6 hours a day, 5 days a week (well, give or take holidays and teacher days). Next September my baby boy will start first grade! That will be more emotional for me than preschool or kindergarten ever were. Those were more like Awww moments. This is HUGE. I am no longer the mom of little kids. They're big kids now! And with that comes all sorts of new and different joys and challenges.

Camryn is a pre-teen, for crying out loud! She turns 12 this summer. I've purchased her first little bras! How does this happen?? The passage of time astonishes and bewilders me. I still think about her little toddler self all the time, the way she said "flow-wow" for flower and "ga-gog" for hot dog.

I just love these pains in the neck them so much.

Before I Die

Today's Listicles topic is this:

10 things you'd like to see happen before you die. They can be things you participate in or things you just witness. ~ Ally, Two Normal Moms

That is a really great topic! Might be hard to only list ten things.

Before I die I'd like to see....

1. My kids living happy and fulfilled lives. That's all I want for them. Whatever that looks like, however they go about it. As long as they're happy, not hurting themselves or anyone else, I'll be happy.

2. My great-grandchildren. I used to be kind of afraid of getting really old, but now that I'm on my way on the down slope to 40, and have children, I find myself wanting to live a good long life. In the immortal words of Aerosmith, I don't wanna miss a thing.

3. A cure for Diabetes. Or even maybe a vaccine to prevent it in the first place. I have no idea if that's possible because I'm not a doctor, or even scientifically minded, but it sounds good. All I know is that disease is a scourge and it needs to be eradicated the same as polio.

4. The end of pimples. Seriously, I'm 37 years old and still getting them. What kind of crap is that? Totally unnecessary and unfair, that's what!

5. Total equality on all levels. Much less of a disparity between the rich and the poor, zero discrimination or prejudice, less divisive political parties and humility among politicians, health care and education for everyone who needs/wants it, every one's basic needs met ALWAYS. Basically, for the world to wise up!

6. Really good, even great, public transportation. Especially here where I live, for me, but I think everywhere should have it. The biggest thing I miss about the Bay Area is BART.

7.  The Seattle Seahawks win a Superbowl. I'm just sayin'.

8. Healthy, organic food at the same price as everything else. There's a vicious cycle going on that looks like this: eat high fat, processed food, have health problems, become unable to work, try to get healthy, can't afford good food due to no job, keep eating the high fat, processed food, get sicker, require lots of medical care which causes costs to rise for everyone, even more people can't afford healthy food and.... If you really think about it, it's another example of the haves and have-nots. And who wins?

9. My fingernails not snapping off the minute they get to a nice length. My mother has the strongest, nicest nails on the planet. Why didn't I inherit that? I inherited her oily, Italian skin, which I suppose is good for the aging process (I don't think I have any wrinkles yet).  I have kinda nice hands, but not nice nails. Just goes to show, you can't have it all.

10. No more fighting about God. If we can accomplish #5, we should be able to do this. Wars in the name of God are one of the least understandable things to me. I'm going to go out on a limb here and say that I feel pretty confident that it's not what God wants. No Holy Wars, Crusades or Jihads. Just believe what you believe and knock off the anger towards others' beliefs!

*Stepping off my soapbox*

I tried to be both serious and light-hearted here. I don't usually blog out my opinions on religion, politics and such. But the question of things I'd love to see come to pass in my lifetime really got me thinking.  There are things in this world I just don't think are right and kind of make me sad (including my weak fingernails). So there ya go.

This topic also got me humming one of my current favorite songs, "If I Die Young" by The Band Perry. I've embedded the video for your viewing and listening pleasure....

Climb Aboard the Hall Family Roller Coaster!

I posted this on Facebook on Monday: Climb aboard the Hall Family Roller Coaster! Sit down & buckle up. Our ride begins with a broken chest wire, we will pause for just a sec to remove it, there will be several very fun loops and things during a perfectly normal weekend and then we will end by heading back to the station (hospital) for IV antibiotics. Enjoy the ride!

I am so witty online!

For those of you who don't know, my husband Mark had heart bypass surgery a little over a year ago and they use wire similar to piano strings to hold the chest plate together for healing.  Well, Mark broke one of them, possibly by sneezing hard, it got infected and he needed to have it removed.

And now....

My husband is in the hospital with a staph infection requiring IV antibiotics after he tried to get himself treated before it got to this point.

I am angry, frustrated, bummed and completely OFF.  I just wrote last week in a post about my priorities how when something is not OK with one of the four of us, everything feels off, and here we are.

I know I remind the world all the time of Mark's health conditions, but it seems to be necessary, even to the medical professionals who care for him.  He is a Type 1 Diabetic, has been since the age of 9, with a 6 year reprieve when he had a successful kidney/pancreas transplant.  He is 43 now and since losing his transplanted organs, has been back on insulin and dialysis for nearly 10 years.

These things make him extra susceptible to infection.  Last year when heart bypass was required it was discovered that he had pericarditis, a septic staph infection SURROUNDING HIS HEART.

People?  Mark may have survived that, but this is not a man we take chances with!

So yeah, I and just about everyone we know are pretty frustrated that Mark's doctors dragged their feet on this.  That might be a bit of an understatement for me.  Because a staph infection could KILL MY HUSBAND!

I don't think this is just me being melodramatic.  Or maybe it is....buuuuuttt it happened to my uncle.  It happens all the time.  It could happen to Mark.

On the other hand, I do think PTSD from "the night from hell" is rearing its ugly head right now.  I am having to force myself to see this as a separate thing.  I am having to force myself to not think about death.

And it's really hard to do.

This infection was caught early, in spite of the initial bumbling efforts of the doctors.  This will be OK.  Mark will be OK.  EVERYTHING WILL BE OK.

This is just another hiccup, bump in the road, minor inconvenience...yada, yada.  I feel like people think I should just be used to this.  That these things happen with Mark and we just have to deal them.  Well yes, that's true, but "these things" are actually serious, and they suck.

I'm allowed to hate it, aren't I?

I'm allowed to hate taking my kids to see their dad at the hospital.  I'm allowed to hate all that Mark has to deal with.  I'm allowed to hate what I have to deal with, what our parents deal with, and our friends deal with.  That there are perfectly healthy people out there who have no flipping idea how good they've got it!  I hate it all.

When you've been traumatized the way I have it can be hard to be OK with the little hiccups.  They tend to all feel like big, scary things.

It's almost Christmas.  Mark had his first heart attack on Christmas Day of 2008.  Such lovely timing.

I'm sorry if this post is rambling and doesn't totally make sense to anyone else.  Just gotta get it off my chest.

We're hoping he will be able to come home today and we can get on with Christmas....

(This post was linked with Shell's Pour Your Heart Out at Things I Can't Say.)

* *

Update 12/27/11: Mark did come home that day, but it was difficult to "get on with Christmas".  He was really tired and bothered by the wound vac they sent him home connected to.  We were both very tense and on edge all the way up to Christmas Eve.  But Christmas Day was great!  We had fun, the kids loved their gifts, we saw extended family and had a fantastic dinner in spite of a power outage.  Yesterday, at the Wound Ostemy Clinic where Mark has his dressing changed, the nurse said his chest is healing so well and so quick he may not need the wound vac much longer.  This I believe is due to all the care and concern from both and near and far, and I am grateful.  Oh, the roller coaster!

#37

TGIF: Diabetes Edition

It's 11-11-11 and Veteran's Day!

Yay Veterans!

And welcome to....

<a href="http://jah-justjennifer.blogspot.com/" target="_blank"><img border="0" alt=""src="http://i1200.photobucket.com/albums/bb331/JenAnnHall/Becky_TGIF-1-1-1-1-1.png" /></a>

Go HERE to read all about how this came to be.  Basically, it's about ending your week on a positive note!
To participate

1. Write a post about something good that happened this week (or if you don't blog, tell me by leaving a comment). It can be anything. Just keep it positive!
2. Grab the #TGIF button and include it somewhere in your post.
3. Come back here and link up.  Linky is open all weekend (even if I publish a new post).
4. Visit other linkers, leave comments and consider giving them a follow (it would be nice if you followed me, but no pressure).
5. Share posts on Twitter, Facebook, StumbleUpon, etc, if you are so inclined!
6. TGIF is now open to guest posting!  If you want, instead of just linking your post to mine, you can be THE poster here.  Just let me know by Thursday of the week that you want to do it, and I will happily step aside and let you take the floor!  Be warned, if no one volunteers, I might put you on the spot and you will feel obligated to do it because you love me!

* * * * *

Today I'm sharing something Important with you.  Important to me and important in general.

The post I wrote on the 1 year anniversary of my husband's double bypass surgery, The Worst Night of My Life, was published over at Band Back Together yesterday.

I submitted it to BB2G because I have started sharing my (and Mark's) struggles with dealing with his Diabetes and dialysis over there.  I feel they are two things I don't see a lot of people talking about.  We talk so much about cancer, heart attack (obviously another thing for us, but for Mark, it all starts with Diabetes), stroke, depression, obesity, abuse and even erectile dysfunction.

And all those things matter too.  It ALL matters (and it sucks that it matters).

But it seems to me that Diabetes is something everyone just accepts as some common condition that is totally manageable and easy to deal with.  Well it's not.  It's a serious illness that effects many aspects of life.  Yes, you can manage it, and yes, you can live with it for a very long time.  But it's hard.  And that's something I'm not sure people understand.

So I will continue to talk about Mark's health problems both here and with The Band.  Both for myself and to maybe help others.

Even if you've already read it, maybe you could check BB2G for my post and let me know you did.

And by the way, if there is anything you struggle with in life, The Band is a really great place to find information, put your stuff out there and get support and find kindred spirits.  Because...we are none of us alone!

November happens to be American Diabetes Month (I swear I didn't plan this!).  Click the link to find out more.  You can go to the ADA's Facebook page too, and post your own pledge to help Stop Diabetes.  I did.

Also, Elena at C.Mom and her daughter Princepessa wrote two posts about the morning Princepessa found her dad sitting in bed with a low blood sugar.  This is something that happens to Mark several times a year.  I thought it was awesome of Elena to share this story, again, because I don't think Diabetes is talked about enough.  So go check out her posts, and let her know I sent you!

Of course, It wouldn't be TGIF without a little something to make you smile....because if we didn't laugh, we would cry....

Write something, link up and make me smile!

Stuck in the Muck

My husband has a couple major health problems and they dominate a good portion of our lives.  Every day of the world he is an insulin-dependent Diabetic and on in-center hemodialysis.  These 2 things can cause a myriad of other problems, and when they do, I freak out a little.

Like I've already blogged about twice, this strep infection that has hit our family is driving me crazy.  Diabetics don't have great immune systems and after being one for most of one's life, poor circulation in the legs and feet.  Mark had to have a toe amputated several weeks after his heart bypass last Fall because a small sore caused the little toe bone to be infected.  So grateful his heart attack made the doctors take notice of his toe, otherwise the infection could've spread into the rest of his foot or worse.

So Mark is susceptible to infection.  That's kind of an understatement.  He was freaking SEPTIC when he had his heart attack!  Right now, he supposedly only has your "garden variety" strep and staph, nothing fancy or that should be too hard to kick.

First antibiotic was apparently not cutting it, though.  He went into the ER last night after his fever spiked to 102-ish.  They decided they probably needed to add another antibiotic.  They gave him a dose of it there and sent him home with a prescription for the rest.

I know it hasn't been another 24 hours on the new med yet, but he's still trying to keep his temp down.  I just find this all so weird!  The temp comes and goes.  He came home from the hospital last night feeling pretty OK.  Then the temp comes back.  What is going on inside his stupid body??

I'm not only freaking out about the confusing nature of it all, however.  See, when everything is going along all status quo like, I'm good.  I can handle and deal with the everyday crap involved with Diabetes and dialysis.  But when something more is dumped on top.....not so much.

I feel like I'm Chicken Little running around thinking the sky is falling!  Whenever something more happens with Mark I start thinking his death could be imminent.  And I don't see this getting any easier the older he gets.  Since "the night from hell", the night of the bypass surgery, I worry that we're working with borrowed time here.

I know I shouldn't think that way.  But I do.  I know the bypass was a good thing for his heart and should be good for him for a long time.  But there are just so many things that could mess with him, so many variables.  I know I shouldn't burden myself thinking of every which way he could die.  I know!  I'm not stupid.  Just not very smart.

At times like these, when Mark is extra sick, I also wonder "why me?"  Why is this the life I'm supposed to have?  But then, I know those are dumb questions.  I know it's all for a reason.  I know it's because I am who I am and he is who he is and we were meant to love each other.  It's as simple and as complicated as that.

I really wish I could ride out the muck without all this inner turmoil.  I try.  I think I was doing a much better job of it before....you know....that night.  It's just that ever since then I'm all the more aware that my big, strong husband is in fact mortal, and I kind of hate that.

When you live in the now, and the now is crappy, what then?  I'm just sayin'....

Diabetes is Dumb

That's putting it mildly, but I have this aversion to swearing on the Internet so I try not to.

Diabetes is an insidious disease that kills you slowly over time.  That is the honest to God truth.  Even if you take excellent care of yourself, if you have Diabetes some complication which it causes will most likely lead to your demise.  I don't even want to list all the problems that can crop up because it is too long and depressing, but suffice it to say, Diabetes is the leading cause of blindness and kidney disease, two very terrible and permanent afflictions.

I married a man with Type 1 Diabetes and over the years have been watching it take its toll on him.  It actually started its insidiousness in Mark before I met him.  He was diagnosed at age 9 and by 25 he was legally blind, had lessening kidney function and neuropathy had begun in this feet.  Once his kidneys failed he was blessed to receive a kidney and pancreas transplant which commenced a 6 year reprieve from Diabetes.  There is a lot that goes into taking care of transplanted organs too, which can make it feel like you've traded one disease for another, but it was indeed a healthy time.  We got married and had a baby during those years.

Mark has been back on dialysis and insulin since winter of 2002, another 9 years now, and there isn't much hope for a second transplant due to antibodies in his system from the first set of organs.  The other problem is, Diabetes and dialysis have caused complications with his heart which ultimately led to his double bypass last September (after several angiograms, angioplasty and stent placements failed), and one very important thing you need in order to undergo transplant surgery is a strong heart.  So he has been listed as active and inactive on the transplant list over and over since 2003.  Each time an "abnormality" shows up on a heart stress test, he is deactivated, then after treatment and a clear heart stress test he is reactivated.

I'm pretty sure one's heart can be strong enough for surgery after bypass, but there's still the antibody issue.  Therefor, in my mind Mark will likely live this way for the rest of his life.  However, one never actually voices this to him.  He still focuses on the possibility of another transplant because it gives him hope.  I can't argue with that, nor should I try.  Taking away some one's hope is cruel.  And despite everything Mark goes through he is one of the most positive and upbeat individuals I have ever known.  It's one of the qualities that makes me love him and how he has taught me so much.

Case in point: sometimes Mark goes through phases of insulin sensitivity.  Meaning he can get low, have an insulin reaction, easily and for no apparent reason.  He seems to be in such a phase right now (which is why I started this post).  The night of my birthday this past Saturday, after a great day in Leavenworth and eating plenty of food (too much if you ask me), Mark ran to Walmart to return a movie and get me a bottle of wine and proceeded to get low while there.  I had a strong feeling something was wrong because this little errand was taking way too long.  He realized he was low himself when he stumbled and bumped into a few people.  They asked him if he was OK and he said his blood sugar was low.  Someone got him some orange juice, he drank it and was feeling better, so he got my wine (and a box of cereal because he thought it might look weird to be low and buy just wine).  But he didn't make it out the door because his sugar was still too low so someone called 911.  Paramedics/EMTs helped him and even drove he and his car home.  I'm not proud, but I was really angry for a little while, not understanding how this could've happened.  Mark tried to reach out to me but I pushed him away.  But, I didn't want the day to end on such a crappy note, so I suggested we find something funny to watch.

Mark spent yesterday afternoon hanging curtain rods in our and Cami's rooms.  At 4:30 he realized he needed to eat and he did.  Then we had dinner around 6:30.  Between 9-9:30 he was getting low again.  He said he hadn't taken a bolus of insulin with dinner because he didn't eat much carbs.  While in the kitchen trying to fix himself something to eat his sugar crashed to the point where he was totally out of it and couldn't stand up anymore.  He had made some toast so I moved it to the table hoping he'd go sit down at it to eat.  I tried to help him walk but he wouldn't let me.  I kept trying to help.  He still wouldn't let me, even though he was about to fall flat on his face.  Thankfully he manged to just slide down to the floor, but not without totally fighting it first.

Once he was safely sitting on the floor I stuck a straw in the cup of milk he had poured and tried to help him drink, but he kept leaning away from me.  I started to get scared that he was going to remain uncooperative and yelled at him to just freaking drink the damn milk already!  He then decided I needed to give him the cup so he could do it himself.  I loathe giving him a cup of liquid when he's low because he will most likely spill it, which he proceeded to do because he kept moving the cup around trying to keep it away from me even though I had backed off.  Mark is like a drunk 2 year old when his blood sugar gets so low!  He was yelling at me to let go of the cup (I had) then he spilled it and I burst into tears, crying as I sopped up milk.

Sometimes if I get upset during an insulin reaction he will hear it and it will make him think just clear enough to actually start consuming something.  He chugged what was left of the milk and I gave him the toast he had made and got him more milk, crying the whole time.  Once I knew he was getting sustenance I went to the bathroom for tissue...and to keep crying in private.  Sometimes I cry out of utter frustration with the way Mark is behaving.  And I was frustrated, but it was more than that.  I was crying so much due to fear.  Yeah it's irritating, then on the flip side, kind of funny after the fact.  But it's also very disconcerting to see Mark be completely different from his normal self....not to mention where my thoughts invariably lead me....this is hurting him....he could die if I can't help him....please God, help me make him better.

Now here's the kicker.  He's feeling a bit better and sits down at the table to just chill.  I'm sitting on the couch and keep looking over at him, asking if he's doing OK.  One time he says he's wishing something would just go his way for once.  Well this hurts my heart so I go over and comfort him.  The next thing he says is "but I'm so grateful".  Grateful?  Now?  What for?  "Because you're here", he says.

I am here.  I am 100% here with Mark, and our kids.  This is what I do, who I am.  Even as I often hate Mark's health problems, want to scream and throw things and not do it anymore, I am completely in love with my family.  How do I reconcile these conflicting emotions?  Hell, life is a massive jumble of conflicting emotions!  All I can do, all any of us can do, is focus on the good, laugh and sprinkle in plenty of other things that make us happy and fulfilled too.  Such as friends, hobbies, work, music, books, movies, great TV shows, food and wine, nature, pets, birthdays, Christmas, caramel....

Diabetes is still dumb.  Watching someone you love struggle is dumb.  Being afraid all the time is dumb.  Anything that sucks is dumb!  I wish it would all go away.

On the other hand....

"We have no right to ask when sorrow comes, `Why did this happen to me?' unless we ask the same question for every moment of happiness that comes our way."

~ Author Unknown