Showing posts with label invisible illness week September 13-19. Show all posts
Showing posts with label invisible illness week September 13-19. Show all posts

Wednesday, September 15, 2010

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!

Saturday, August 28, 2010

Chronic, Invisible Illness

Invisible Illness Awareness Week is September 13-19. However, I don't want to wait until then to start writing about it. The more information we can get "out there" the better off and more educated people will be.


I've talked about judgement, which I admit is super tough to NOT do. I'm sure I do it too! If I see certain people doing certain things I make assumptions. I do it a LOT less than I used to, but sometimes I don't think I'm even aware of it. I think our society has almost ingrained certain images into our mind of what's right, what's wrong, and what to think about this or that. Well it's time to start using our own brains, people.


Much of what society says is okay is definitely NOT.


Here are some things NOT to say to something with an "invisible" illness.

1. You look really good today! {thanks....it only took me 10 minutes to put my ponytail in today because my arms can't stay up for more than 10 seconds. I put make up on so you don't see the luggage under my eyes from not sleeping from being in pain, or not able to breathe...}

2. Well, you don't LOOK sick. {well thank God. I must not be then!}

3. I read about this doctor who uses hypnosis to cure anything! Maybe you should call him! {Ah, yes, and maybe I'll end up quacking like a duck when the clock chimes. Maybe you should go play in traffic. It will probably have the same effect.}

4. "Where do you work?"
"I can't. I have Myashtenia Gravis and cannot work anymore."
"Well have you tried? You look okay to me." {Well, stop the presses. If I look okay to YOU then I must be okay! Hallelujah! Of course I've TRIED. Do you think I LIKE not being able to work?}

5. "I'm so sorry. This must be so difficult for you! I couldn't never get through it. I'd just curl up and die." {Gee, thanks. Like I'm not depressed about it enough already!}

6. "Well, if you just have enough faith God will heal you." {Don't get me started on this one!!!}

7. "Oh, is that serious?" {Don't ask unless you really want to know. And most of the time, casual people don't want to know.}

8. "How are you?" {Honestly? See my answer to number 7. I may ask you if you want the TRUTH, or if you want me to just say fine. People always look shocked, which never ceases to amaze me.}

9. "What did you do to get that?" {Yes, I'm sure it's my fault. I'm sure I did something to set off this autoimmune time bomb in my body.}

10. "Maybe you should see a psychiatrist." {First, believe me I have. Mostly because of people like you. Second, just because YOU don't see it, doesn't mean it's not there. I. AM. NOT. CRAZY.}

And yes, I have actually heard every.single.one.of.these. To my face. Nice, I know.

If you have any questions about Myasthenia Gravis, chronic illness, Invisible Illness, whatever, PLEASE leave a comment and I will be MORE than happy to answer them.

Have a wonderful weekend!

Love Changes Everything by Micah Berteau - A Book Review

If you're not familiar with the story of Hosea and Gomer in the Bible, it's really quite shocking.  Here's my brief synopsis...