What About Obligation?

So I'm talking to my counselor yesterday about how overwhelmed I am, and how exhausted I am, and since Doug is sick there's more I have to do, etc.

He suggested making a list of what I do, what I love to do and what I'm good at. I'm like, well that's easy...but where does obligation fit in here?

He looked at me like I asked a question in Hungarian. What obligation do you have? he asked.
I was like, um, cleaning...cooking....laundry....putting my dogs out...feeding them...taking care of my child...

Okay, so let's add a column for things I HAVE to do: like put the dogs out (technically I don't HAVE to, but I'm not cleaning up after them so...), feed and clothe Jacob, meet his needs (not all his wants, at least I've got that part down!)

Aren't there still obligations in life? Am I not obligated to TRY to take care of my house? I make all the phone calls and all the joy that goes with scheduling things for all of my doctors (who seem to keep growing instead of compacting!) I pay the bills, I do the budget...half the time I give Jacob his baths....the other day Doug had to go to the doctor (which NEVER happens) and Blackie jumped in the stupid duck pond (for which we have no longer have ducks.)

So after Jacob's bath, I knew I'd have to give Blackie one, because he stunk, and Doug wouldn't do it when he got home because a. he doesn't care if the dog stinks (he works at a poop plant, and says he can't smell it, so obviously I'M the better smeller of the two of us!) and b. he's really sick and doesn't have the energy.

FRUSTRATING. The only things that get sacrificed are the things I want to do, and according to my mental health expert, those are the things I SHOULD be doing to retain some semblance of sanity. (My words, not his...he hasn't checked me into the funny farm yet...although I think he's seriously considering making reservations. If he doesn't, maybe I will!!)

So what do YOU think? Do you have obligations? How do you handle them if you have chronic illness? Since we have a car payment now we really can't afford to bring anyone in to help, but because Doug has a great job we make too much to qualify for "help" of any kind.

Ug. Please let me know how you do this!!!

I Think It's Time for that Tequila

I swear, between Consumer's (who DID call to apologize, by the way, AND put it in writing that they made a mistake...mmmm-hmm) Verizon and Direct TV, I just want to do some tequlia shooters and run off to the mountains. But alas.....ain't happenin'.

Verizon has been "working" on my connection problems for over a week, and this is what they have come up with so far: I am between 2 cell towers, just a tiny bit closer to one than the other. From my past history (sounds way more interesting than what they mean) I've been pinging between the two towers. The one that I am closest to is over capacity (too many users) and they are working on upgrading it. They are planning on having it done by the END OF THE YEAR. Are you smoking crack out of your ever loving mind???? Deep breath...deep breath. Oh, yeah, I can't TAKE a deep breath!

Then there is Direct TV. We have been "new" customers (as in never tried them before) since August 27, and we have had no less than SEVEN service calls. I called LAST Wednesday for another one, because they still haven't solved the problem, and they said the FIRST available agent would be here a week from that Saturday, (which is this Saturday) between 4 and 8 PM. Oh. My. Flipping. Word. I was like, do you realize we've been customers for all of 3 weeks? You're telling me you have NO ONE until 11 days from now? NO ONE?????

Frankly, I don't believe you. But that doesn't matter, because you have all the power and control over my TV so ppphhtttt on you.

Then I had a doctor appt. today (good thing they called to remind me yesterday because I had no idea) and started bawling when he asked me how I was doing. Nice.

I'm going to go eat supper now. And have a drink or 3.

How Did I Get Here?

When I was in college...I had it all figured out. Graduate college, go directly on to a Masters program, have a Masters degree in education, start teaching, and continue to on to my PhD. I would be done with the Masters by 25 (at the latest), then get married, and start having kids. I was a Christian, I was told I could do whatever I wanted to when I was little (an injustice we continue to say to our children...more on that in another post), and I had a supportive family and friends...no abuse, no hardships to speak of. I mean, my dad worked his hiney off so we could go to private school, so he was absent sometimes, but...overall, my life was good, I had lots of advantages, I loved school, and I was quite intelligent.

So how did I end up here? An almost forty-year-old mom to one child, living out in the middle of nowhere, married to an incredible man, homeschooling of all things, got the Bachelors, but no Masters, certainly no PhD. I have health issues that I could have never anticipated, and other than being married to said incredible man, there really isn’t anything about my life that I planned on that worked out. At least on paper.

And honestly, I’m not sure how I feel about that. I mean, I know that MY plans started veering off course when I started working for Towne Air Freight…but I became very successful in that industry and I really loved it. But I knew it wasn’t my destiny. I did know my destiny would take me where I am today, yet here I am.

Jeremiah 29:11 tells us that God has plans for us. Plans to give us hope and a future. So I cling to that. I’ve posted about hope before; if I didn’t have hope, I can honestly tell you I wouldn’t be here. If this life was all there is, I would have totally checked out. I can promise you that.

But because I KNOW that this life is but a fleeting moment in the grand scheme of things; that my time on earth is so short, and that compared to eternity this is NOTHING. Because I KNOW that my Redeemer LIVES, and that I will be whole and perfect in heaven someday.

I will be strong again. No matter how old my baby boy is I will pick him up and throw him in the air, something I’ve really never been able to do.

I will get down on the floor with him and let him jump all over me, because in heaven, there is no more pain.

I will laugh and laugh and laugh, just like I used to, with tears rolling down my cheeks, you know, those kinds of tears that only hearty laughter can employ, without running out of air.

I will swim underwater and sleep on my stomach and take showers with my head tilted way back and not worry about drowning or suffocating.

I will see my Jesus, face to face, and KNOW that every second of every moment of pain and suffering that I may have gone through will evaporate when I look into his eyes, and He says, “Welcome Home. You have fought the fight. You have run the race. You didn’t quit. Well done.”


Oh, and I’ll be skinny too! That doesn't stink at all! : )

Going Out With A Bang

Well, as is typical with chronic illness, plans change. I wanted to spend time on a final post for invisible illness awareness week to inspire you, to move you, to raise your level of awareness, and incite compassion for those who suffer. I wanted to go out with a bang.

Instead, I'm just fizzling a bit. I had to go to Ann Arbor Friday for plasmapheresis. No biggie. It went pretty well. A bit slow, but nothing major. Got home and Jacob's nose was running. He has allergies, so I thought no big deal. Friday night he was coughing a little and really runny and stuffy, and I was just exhausted from the treatment. I was especially tired after this one.

Friday night, up most of the night trying to deal with Jacob, who was mostly ticked off because he couldn't suck his thumb. Saturday morning, I feel like I'm coming down with something. Asked people to pray. (Especially since I, in effect, just had my immune system removed.)

Today, Sunday, we were finally going to start looking at church together as a family. Obviously that's not happening.

So as happens very frequently in my life, I didn't get a thing accomplished this weekend, I can't do any of the things I'd like to, and my baby is sick. I'm NOT trying to elicit sympathy, I'm simply trying to explain that I live daily with that frustration of just. never. knowing.

And I was always the one with the dayplanner very carefully scheduled! And some people say God doesn't have a sense of humor.

So again, have extra patience dealing with people. If you have a friend who is chronically ill, please don't forget about them. They can be doing great one day, and in the proverbial weeds the next. And it goes on like that, day after day, never knowing what it's going to be like when I wake up. Good day? Bad day? Lots of change in my pocket? None?

Day by day. That's all I can do.

Why Do I Blog?

I receive writing prompts from MamaKat, and this week there are so many good ones! But this week is also National Invisible Illness Awareness Week, so I have been writing about that, and having guest bloggers. This one ties right in to both!



Why do I blog? What does it mean to me? Well, let me start by saying that this is the second time in a week I have been at my husband's work place with my computer because my internet connection at home is having issues. So I came here so I can blog.



Blogging means a lot to me. In short, it is my connection to the world. Because I have myasthenia gravis, and quite a severe case at that, I really don't get out much. It's been a long time since I've been able to be part of a regular church, and I can't just jump in that car and go somewhere. Usually, if I have to run an errand, someone either has to watch my son, or I just can't go. Normally by the time I load him and our stuff into the van, I'm too tired to drive.



So this blog opens my world quite a bit. I have friends I've met through blogging that I never would have met otherwise. Friends in Michigan, Texas, New Jersey, Ohio, New Hampshire, even Belize! And I'm SO thankful for each and every one.



Blogging is important to me because I want to educate people about myasthenia gravis and chronic illness. MG can also be a largely invisible illness, and it's so easy to judge people because of it. I have a trach, so I look more "sick" than some, I suppose, but nevertheless, people stare, and judge. You can just tell by looking at them.



I started blogging for cheap therapy. My BFF Joanna got me into it. I was like, no, yours is so funny, I don't want to compete, I'll just read yours, and for a long time I did! But then I realized how HUGE the blogosphere was! Whoa! (By the way, there's no competing with Joanna...if you read her blog, make SURE you put your coffee down first!!)



I can vent. I can laugh. I can cry. I can share my faith. I can share my illness, my pain, my joy, my triumphs. I love to write. I love people. Once I got started it just seemed natural to continue.



So to anyone who reads my blog: Thank you. Thank you for leaving wonderful comments that lift my spirits, thank you for following me. Thank you for the e-mails you send telling me a certain post made an impact on you. It means so much to me to know that even ONE person is effected positively in some way by this blog. That's all I could ask!



It's been almost 2 years and 500 posts, and I'm more thrilled with blogging that I ever have been!

Blessings to you all!

Being the Caregiver Ashley's story

I am so excited to have my second guest blogger in one week! Be still my heart! I met Ashley blogging, and she is a darling young southern belle recently transplanted to New Jersey. I can't quite imagine the culture shock! She and her husband are in their 20's, and she is his caregiver. I am so thankful for meeting friends like her through blogging. It's awesome. She is one tough cookie. Here's there story.



I asked Ashley to share with us what it's like to be a caregiver and she wrote this beautiful post:

In February 2008, my husband, David, was diagnosed with Psoriatic Arthritis. We were in our early twenties, having only been married a year and a half. The rheumatologist said we'd caught the arthritis early. He expected David to go into remission. Shortly after his diagnosis, we bought a house, and I was able to quit my full time job to become a housewife.

David's arthritis continued to get worse until January 2009, when he experienced his worst flare ever. He was bedridden. I had to dress him, and help him in and out of the tub. Now David is doing better, but he still has flares and our life is far from normal.



A few weeks ago, I was telling David how much I thought his acupuncture treatments were helping him. He responding by saying that, "Yeah, acupuncture helps, but the Lyrica the doctor put me on, that really helps a lot. I feel a lot better on it."



I was so excited. The Lyrica was helping! David was feeling better. I imagined being able to attend Sunday School in a few weeks. And in a month or two, we'd start walking the dog together after dinner every night. Next summer, David would be able to wakeboard again. We would start going out on dates. We could go to the movies or even bowling!



Reality came crashing down the next morning when David had to leave our church service early because of neck pain. The Lyrica is helping, as are all of his other treatments, but there is no cure. David isn't even in remission.



You'd think that by now I wouldn't keep getting my hopes up with every new treatment. But every time we change his diet, try a new pill, or see a new doctor, I hope and pray that this is it. That this will be the treatment that puts him in remission.


David and I were high school sweethearts. He's the only guy I've ever kissed. I cannot express in words what it's like to see the man you love disabled. Being a caregiver or well spouse to a young person with chronic invisible illness is really hard. I am constantly frustrated with a pharmacy or insurance company, and I struggle with guilt over not getting David help for his pain sooner. I spend a lot of time researching treatments and tips for David's arthritis and preparing meals that meet his strict dietary needs. I certainly did not expect this season of our life to be about chronic illness.


Psalm 39:6-7 Man is a mere phantom as he goes to and fro: He bustles about, but only in vain; he heaps up wealth, not knowing who will get it. But now, Lord, what do I look for? My hope is in you.


If I had to say what I thought God was teaching me through my husband's chronic illness, I would say flexibility and reliance on Him. When it's time to sign up for the church picnic, we don't. We just tell people, "We'll come if David is feeling up to it that day." The simplest of routines gets thrown out the window if David has a flare. I like my plans and schedules, but apparently God has other plans.


Proverbs 19:21 Many are the plans in a man's heart, but it is the LORD's purpose that prevails.


Most people our age our self-reliant. They've got it all under control. We don't. Not that I've completely perfected relying on God. Far from it. But I can say that I rely on Him and put my hopes in Him more now than I did when David was diagnosed. It took me a really long time to see any good in David's Psoriatic Arthritis. If you are struggling with chronic illness or being a caregiver, you are not alone! I encourage you to read Kerri's story and check out http://www.restministries.org/



You can also read the rest of Ashley's story on her blog, A Young Wife's Tale.
Thank you Ashley!

Invisible Illness...Did You Know?

September 13-19 is National Invisible Illness Awareness Week. Today I wanted to tell you some things you may not know about chronic and/or invisible illness.

Did you know that almost 50% of the population of the United States has a chronic illness?

That by 2020, according to the Department of Health and Human Services 157 million people will be affected by chronic illness?

INVISIBLE ILLNESS makes up 96% of chronic illness. These people do not use a cane or any assistive device and may look perfectly healthy.

Did you know that 60% of the chronically ill are between the ages of 18 and 64?

The divorce rate for couples with chronic illness is over 75%.

I have to stop here for a moment. I just kept saying, WOW. That is HUGE! Seventy five percent!Three-fourths. Only 1 in 4 marriages with chronic illness survive. I can understand why, because it's hideous to live with, and it's horrible to take care of.

It makes me all the more thankful for MY husband, and for the other solid marriages I know of where the couple is dealing with chronic illness. Thank you to our caregivers. God Bless all of you. We know it's hard. It's hard on us too, but you have to watch a loved one suffer. You usually work outside the home as well. If you don't, you have to keep the home and cook, many times special diets. You run the errands, call the doctors, deal with insurance, and for that, we thank you.

So from the bottom on my heart, thank you!

The risk of depression is 15-20% higher in people with chronic illness.

Various studies have reported that physical illness or uncontrollable physical pain are major factors in up to 70% of suicides.

And finally, did you know that those who use their religious faith to cope are significantly less depressed, even when taking into account the severity of their physical illness? In fact, the clinical effects of religious coping showed the strongest benefit among those with severe physical disability. Some 87 patients hospitalized with serious illness who also then suffered depression were followed over time in another study. The patients with a deep, internalized faith recovered faster from the depression, even when their physical condition wasn’t improving.

(Statistics from http://invisibleillnessweek.com/2009/05/06/statistics-chronic-illness/)

There is a reason for my hope in trials, for my peace in chaos, for my joy in sadness. His name is Jesus. I know someday I will be with Him, free from all this external baggage. I will be whole. I will be healthy. I will be perfect. And I will be free.