Pages

Sunday, October 9, 2011

8 ways to deal with a chronically ill friend...

One of the surprising elements to come out of my recent Lupus flare is people's response to my health. Friends and acquaintances have shared their thoughts and, interestingly enough, their expectations on how my flare would play out. Many people shared that they have been surprised at how long I have been sick (some even casting suspicion on if that is even possible). I've had a few friends genuinely share that they thought I would be feeling better and back to my old self within a few weeks, a month at the most. Others have expressed frustration in how long and frequently I was ill. Still others were sympathetic but had no idea how to help or what was needed. It has been touching to see a friend's genuine love and care in a crisis.

While each chronic illness has it's own unique conditions and I can only speak based on my experience, I thought I would put together a list of how to respond to a chronically ill friend.

**Disclaimer: Please do not hear me say that a flare or chronic illness is an excuse for poor behavior, complaining, whining, or the platform to garner attention and sympathy. It shouldn't be used as an excuse for any of those behaviors. I hope this list provides some helpful insight into interacting with a person with a chronic illness.

So, here we go!

1) Pray. Pray for your friend. God hears 'em and can work out the health issue according to His will. Never underestimate the power of prayer.

2) Extend flexibility. Even if you don't understand how a specific chronic illness works, be flexible in what your friend or family member can do. Believe me, those experiencing a chronic illness do not want to 'flake' at the last minute on a planned event or commitment. Nor do they want to 'check out' of their normal activities. They don't want to miss out on the fun yet there are seasons when the illness and health takes priority. In my case, a Lupus flare is the time when the disease is in hyper-drive, causing internal (sometimes permanent) damage. If I don't slow down and yield to the disease, I can exasperate it, making the damage done worse. Often, a chronic illness requires day by day living as how I feel today doesn't predict how I'll feel tomorrow.

3) Offer encouragement. Battling a chronic illness is exhausting,frustrating and typically sends one into depression. The chronically ill person has to hand over reins to their life, at times, to the disease, and that is no fun. Be an encourager. Let the person know sunny days are just around the corner and the dark clouds will dissipate with proper rest and care.

4) Ask questions. I, for one, am open about my disease. It is not my identity, it is not something I want to focus on, especially when I'm feeling well but I am happy to answer questions. If you're unsure, please ask. I have been so surprised by how many assumed my flare would last as though it were just a common cold. The truth is flares are unpredictable and devastating. According to www.webmd.com, "Flares and remissions can occur abruptly, unexpectedly, and without clear cause. There is no way to predict when a flare will happen, how bad it will be, or how long it will last. When you have a lupus flare, you may have new symptoms in addition to those you have had in the past." I was surprised to experience frustration from someone who assumed I would be all better in a couple of weeks. Ask questions to prevent wrong assumptions and misunderstandings.

5) Lend a helping hand. Chronically ill patients have one thing in common - severe fatigue. Regardless of the disease, extreme fatigue is the common link. The body is extending all of its energy to fighting off the illness, leaving the body depleted of energy unable to do what we'd consider 'normal' acts. At one point over the summer I couldn't walk from the kitchen to the living room without being out of breath and needing to lay down. I'll be honest here - this bugs me and tweaks anger in me. I know it's silly but it's embarrassing that I couldn't walk across the room without having to sit down. I don't want to feel incapable or weak. I don't want to be seen as that way either (yeah, I know... pride issues). I want to do normal stuff. Cook dinner for my family. Walk to the park and play with my kids. Take a bike ride. Do laundry (don't WANT to do it but need to). Clean my house. Go on a walk. Try new adventures without having to consider pain level and how and when my joints will lock and stop working. Yet, when I'm in a flare, it is difficult to do these things. It is difficult to get out of bed. Literally. Putting aside the severe, heavy, debilitating fatigue that presses on the body like a boulder, most mornings my joints didn't get the memo that I want to move. Walking is something people take for granted. This combo - fatigue, pain and pride - make it difficult to ask for help. Go ahead and offer it. It is truly appreciated in a great time of need.

6) (Ok, this is going to get blunt here but..) Don't dismiss the knowledge. Yeah, I had to go here. I know people mean well but don't dismiss or second guess the one who suffers with a chronic illness. I know the intentions are good and, embarrassingly enough, I've done it too. But consider this... the person living with the illness is not only living it first hand but has most likely done a lot of reading on the subject (not to mention had lots and lots of doctor appointments). For me, Lupus (and the other auto-immune diseases I have because of it) is what it is. It looks different for different people. I know your aunt's cousin's niece only had one flare her entire life and to that I say your aunt's cousin's niece is lucky... and may not have Lupus (key word - MAY). While you may know someone with similar disease or circumstance doesn't make it so for all. To imply that only makes the person feel worse as though they are freaks.. or worse, hypochondriacs. What I know about Lupus comes from what I've experienced with Lupus. Everyone has different rates at which the disease presents itself and to what extent. The most consistent thing about Lupus (and all chronic illnesses, I imagine) is that it is entirely inconsistent. Allow the person to express their unique experience with the illness without dismissing it.

7) Respect boundaries. Understand that your friend or family member, if they know what's good for their health, will need to put boundaries in place. Perhaps it is avoiding certain foods or cutting back on activities once enjoyed by you both. You may not see as much of your friend during seasons when the illness is active. Please don't take this personally. It is not a reflection of the value of friendship or activity. It is, simply, a necessary step to take to regain optimum health. Sure, you may be able to eat what you want without consequence, require only 5 hours of sleep each night, and be active with groups and activities every night of the week but understand these things may not be possible for one with a chronic illness. Also, in order for health to continue to improve and avoid going back in a flare, boundaries most likely need to stay in place to maintain good health after the crisis has gone away. As of right now, I'm not completely out of my flare. Don't get me wrong, I feel immensely better BUT I am still battling fevers, fatigue and pain. I'm not totally out of the woods yet and the boundaries I've created in my life (and even went lax on the past few weeks) need to stay in place to regain my health. Unfortunately, that means I may not be able to volunteer in the same groups, activities or participate in all opportunities that come my way.

8) Recognize that your friend is still your same, 'ol friend deep down inside. Know that your friend is still your friend and diminished health doesn't change that. For me, I had little social interaction this summer, as a way to get more rest and turn my health around. It was a necessary step in order to regain my health and prevent permanent organ damage. When in a flare, anything and everything makes a flare worse. Know that your friendship is strong enough to weather a temporary health setback. Love each other and embrace each other..regardless of circumstances.

Let's face it. It's hard and even awkward to be around a chronically ill person. It's hard to relate or understand, especially if you've been blessed with good health. Trust me when I say that I wish I didn't have this. I hate the inconsistency it brings in my life.. not to mention the pain and diminished health. Some seasons of my life, I'm full of energy and ready to conquer the world and in others, I'm lucky to make it down the stairs. I hope that as my friend, you can rejoice with me in times of good health in my life and mourn with me in times of poor health.. as I hope to extend to you. Journeying down the road of chronic illness with supportive friends makes such a difference!

hello? Remember me?? and my summer journey...

Man, it's been awhile! Sorry about that! When I took the summer "off", I REALLY checked out! The time off to heal was a blessing and a great help. It helped physically, spiritually and emotionally. We chose activities outside (and inside) the home carefully and found ourselves with more free time and at home more often. But even with more intentional resting and little responsibility, my body was not responding. I was worried. The level of pain wasn't diminishing. In fact, it was growing worse. This was not how I wanted to start our new school year or another co-op year. I knew drastic times called for drastic measures and with the news of my husband's worsening heart condition, we changed our diet. Drastically. I am and have always been convinced in the direct link between the food we eat and the health we display. I have experienced first-hand health improvements when I eat real, fresh food. Specifically, fruits and vegetables.

So, we embarked on a 2 week homemade smoothie diet. Chris and I drank our 3 meals a day and each smoothie contained 5-10 servings of fruit and veggies. In using Nutrition therapy, Chris' heart symptoms diminished and was able to stop taking his newly acquired blood pressure medicine. I saw an immediate disappearance of the joint pain that had me taking WAY too much motrin and in tears each day. We both gained a wonderful amount of energy. We felt alive and healthy! At the end of the two weeks, it was hard to believe that my body had been fighting with a Lupus flare for 9 months! It was amazing to experience what 'good health' feels like for the first time in years!

Well, we slowly allowed food (you know, the kind you chew) back into our diet and became less discriminating on what we ate. BIG. MISTAKE. Our symptoms have slowly been coming back - one at a time - with each passing week. So, tomorrow we embark on round 2 of our green smoothie detox in the hopes of diminishing or even curing chronic illness, feeling healthy and GREAT again, and re-training our taste buds to be discriminating to God-made food!

Have you tried making green smoothies? If so, what is your favorite recipe? If not, why not? :)

Monday, May 23, 2011

I am the face of Lupus...

and you can't really tell, can you? That's because there are rarely outward signs of Lupus, and many other auto-immune diseases. It is a disease that lurks within attacking all those areas in my body it so chooses. Normally, the body creates antibodies when a threat appears to the body. With auto-immune diseases, the body creates Anti-Nuclear Antibodies (ANA) that attacks the GOOD antibodies AND anything else that is helpful (organs, blood, bones, vitamins, nutrients, babies... yeah, all that good stuff).

There is no cure and not a promising future. Lupus, as with many auto-immune diseases, shortens one's life. The dangling thread of hope is that the disease goes into remission. For a long time. Unfortunately, remission isn't a formulaic procedure. if I follow these steps and this treatment, then it gets under control. I wish it were so simple. In fact, remission is so dependent on a variety of possibilities and, even then, a patient could be doing everything right; have all pieces of the puzzle in place and the disease still roar out of control.

So, I'm in a flare. Trust me, it's not as exotic as it seems. In fact, it's frustrating, painful, inconvenient, exhausting and dangerous. Not necessarily in that order. A flare means the disease is not only actively destroying parts of my body but is overactive; so it's in hyper drive. This is dangerous because it can cause the same damage (or even death) at a faster rate than it is normally doing damage to organs. And I'm not just talking AN organ. It's got the entire buffet to choose from - kidneys, liver, skin, brain, heart, lungs, pancreas, connective tissue, muscles, skeletal system, etc. My body is in such a hyper active mode right now that the onset of my period (sorry for going there) puts my immune system into attack mode - with fever, body chills, etc. So bizarre!

I am concerned about the damage that could be occurring but no one can stop. I am concerned that when it's waging its war against my body, what permanent damage will I be left with. Yet, this.. this is the most troublesome component of having Lupus: how it effects our home life.

When the Lupus is active, it changes how I am as a wife and mom. I cannot do the same things I can when I'm not under attack. I do not have the same energy, attention or quality of care as I do when Lupus is in its cage. I am not me when it flares... and I can't STAND that! To see the quality of my home life, the interactions with my husband and children suffer at the hands of this dumb disease, truly breaks my heart because since I was in Kindergarten, all I've ever wanted to do was be a stay at home wife and mom ( I had a few other dreams here and there but this was my heart's desire). It makes me so sad to not be able to do the normal, everyday things I should/could/would do if I didn't have this limitation!

However, despite my frustration, I know I'm held in the palm of my Creator's hand. The Bible is very clear that we have bodies that are imperfect and will deteriorate and fade away. I actually discovered a blessing in my last flare-up some years ago. Instead of seeing it as the enemy (which is sometimes hard NOT to do), Lupus, or any disease, can be God's way of prompting us to change the pace of our life. It can be a friend who is forcing us to take it easy. It can be a wonderful way to remind us to slow down and spend more time taking care of ourselves and our loved ones. It is a wonderful way of creating healthy boundaries in one's life. I know that He is in control, not the Lupus. My temporary panic of learning I'm in a flare is being overcome with the reality to rest easy in His arms and listen to the promptings to let go and let God, once again.

Wednesday, May 18, 2011

Let go and Let God...

It's been awhile since my last post but you can see from it that I love to plan! I love planning events, routines, schedules, shopping trips, vacations, home school schedules... it's endless, really, all the things I can plan!

This week, Good Morning Girls kicked off their summer reading program which gets women all of the world into God's word daily. Next week we also begin reading through the WONDERFUL book, "Ministry of Motherhood" by Sally Clarkson. Why do I tell you this? Well, it's not too late to jump in and join us, for starters! There is still room for you so head on over to Good Morning Girls and join an accountability group and meet some wonderful women! I have and am enjoying getting to know these women better as we journey this road together.

My other reason for bringing this up is to share with you what God has shared with me today. With my propensity to plan, it's easy to get ahead of God. It's easy to have my week, month, year all planned out. Logically, I KNOW that my plans won't all come to be, yet, I gain comfort from planning it anyway. Strange, huh? A good clue as to where I place my trust and faith - not His plans but my own. Ugh.

In Matthew 6:33 we read, "and He will give you all you need from day to day if you live for Him and make the kingdom of God your primary concern." This is a powerful IF/THEN statement that spoke to me this morning. My focus needs to be wholeheartedly, first and foremost, on Him and His ways. Yet, that is difficult when my mind is wandering to next week's dinner with friends or the camping trip in a month or what my kids will learn next school year. While those things aren't "bad" to focus on and plan out, they occupy too much of my focus in the day to day that I run the risk of MISSING today because I'm not HERE!

Now, this seems like such a simple "DUH, Sheri" moment. Perhaps this isn't a struggle for you but, boy, did I need to be reminded of this! My faith and trust shouldn't lie in MY plans but in the One that holds my future. This verse is SO clear - It is day to day that God provides all of my needs WHEN I'm focused on Him and His ways. I mean, The One who created all things and was there in the beginning and knows the end, He, even He, provides not a month's worth of needs, not a week's worth but day to day. If the Creator of the universe can focus on the day to day, surely I can take captive my thoughts and focus and bring them down to TODAY. In doing so, I become a better wife and mom because my focus is on my time with them - today.

It's easy for us to focus on the good part of this verse (He will provide ALL our needs day to day...) yet this verse requires action from us. He promises to take care of ALL of our needs, day to day, IF (yes, this is where you and I come in) I live for Him and make His ways my "primary concern". For me, this action is taking my thoughts and focus captive and behaving in a way that shows my faith and trust in Him - not my plans. For the reality is, I can make all the plans in the world and it gives me warm fuzzies to do so BUT I'm not in charge. I'm not in control of those plans or the REAL plans that He has for me. I need to lessen my faith in my own way and let His way in. "Let go and Let God" as the saying goes. That is what I needed to hear today.

I don't think making plan is 'bad', it is how tightly we grip those plans that is a problem. It is when we put our faith and trust in the plans and not the One who REALLY is in charge.

Let go of whatever you are holding onto today and Let God. Let God move in your life. Let God lay a better plan than you could ever have imagined.

This post is linked up to Women in the Word Wednesdays over at GoodMorningGirls

Friday, April 8, 2011

Schedules, routines, and lists... oh my!

I happened upon this blog, A bowl full of lemons that challenges its readers to weekly organizing challenges and, before I got sick, had planned on joining in! Well, I'm resting on the couch and decided to make use of this time by better organizing my weeks.

Part of having a meaningful home life is routines. If chaos rules your home, it makes it much more difficult to carve out time for meaningful moments, let alone let them happen spontaneously, because you're too busy playing 'catch up' in all that has fallen behind. I'm all about having a meaningful home life and the best way to achieve that is a little organization!

Enter the latest challenge - create a schedule and routine as well as kid's schedules. So, here I am again... ready to tweak my schedules and routines, improve upon my systems and make our home life flow more readily in order to have room and time for meaningful moments!

Of course, routines and schedules are not to lock you in and suffocate. They are to help make use of your time better by providing direction.

Won't you join me and A bowl full of lemons in taking these fun challenges to improve your home life?

Here's my weekly routine:

Monday – Laundry; Home school; Staff meeting; small group bible study
Tuesday – Upstairs cleaning; Home school; Projects (Science or Baking), Scouts
Wednesday – Downstairs – cleaning; Home school; Projects (Art or Movie); Scouts
Thursday – Laundry; Home school; Kaary-appt.; Library day; Piano lessons
Friday – Home school Co-op; Laundry; Family night
Saturday – Family Fun day OR Home day; OR Various activities
Sunday – Church; Rest; Youth group

Here are the boys' daily schedules:
Josh and Jake’s schedule:
7:00 – 7:15 – Wake, make bed, get dressed, turn on Cami’s lights and feed her
7:15 – 7:50 – Morning devos, Breakfast, prayer
7:50 – 8:00 – Morning chores (clean up breakfast table; bring down laundry hampers and sort, etc.)
8:00 – 10:15 – School; Fridays - CHILL
10:15 – 10:30 – Break; Fridays - CHILL
10:30 – 12:00 – School; Fridays - CHILL
12:00 – 12:30 – Lunch; Fridays - CHILL
12:30 – 1:30 – School; Fridays - CHILL
1:30 – 2:00 – Afternoon chores; finish up in remaining school work or projects
2:00 – 4:00 – Free time
4:00 – 4:30 – Scouts study time; help with dinner prep
4:30 – 5:30 – Free reading; help with dinner prep; garden/yard chores
5:30 – 6:00 – Dinner;
6:30 – M- Small group; Tu. – Jake- Scouts; Weds. – Josh – scouts; Thursday – 6p.m. – Piano lessons
7:30 – get ready for bed
8:00 – free reading time for Josh and Jake in bed
8:30 – Bedtime – Jake
8:45 - Bedtime - Josh

Saturday, March 5, 2011

A Verse That Speaks A Thousand Words...

Hebrews 12:11-13 - No discipline is enjoyable while it is happening—it’s painful! But afterward there will be a peaceful harvest of right living for those who are trained in this way.

So take a new grip with your tired hands and strengthen your weak knees. Mark out a straight path for your feet so that those who are weak and lame will not fall but become strong.

This verse came before my eyes this morning. I'm not sure what stood out and spoke to me more but every word contained a message for me. Every word meant something to me, as though it had been written just for me during this week.

To be perfectly honest (and if you can't be honest on a blog, where can you??), this week has been a difficult one. With the weight of the world on my shoulders, I felt so defeated and discouraged this week. These past few months have brought recurring illnesses for me and my family, discouraging words, sad news, criticisms, complaints - large and small, and it felt overwhelming at times.

God can take any situation, though, and turn it into an opportunity to learn and to grow. That is what he has done with me this week. He has shown me areas of my heart that need discipline. Areas that need 'pruning' and areas where I need to let go.

Self-discipline is hard and discipline from God, well, that can be even harder. It is true what the verse says - discipline can be painful! Yet, we know that, if we are open to it, it DOES provide growth and peace. I don't know about you but those are two things I desperately want in my life.

Wednesday, March 2, 2011

Ants in the pants...

I've been censored. At least, for now. I'm unable to post pictures. I'm also unable to describe, in detail, what took place over one weekend in November. I can't describe to you how my kitchen looks now. I'm forbidden to tell you all of the ways my kitchen was changed. How a construction and t.v. crew took my outdated and stagnant kitchen and turned into... well... I can't say.

And quite frankly, it's killing me. How long is a production company gonna make a girl wait, anyhow??

Until our show airs, which the producer said will most likely be the beginning of April, I can't talk about it. I can't even post pictures.

I CAN tell you that we had so much fun with the crew and host! Despite some anxious moments (you'll have to see), we laughed, joked, and tried to enjoy the company of 20+ extra people in our home for 3 days.

I CAN tell you that the host, Josh Temple, is wonderfully talented, funny and touching. Chris and I both had a moment with him where he opened his heart up and spoke some touching words to us that, honestly, blew both of us away. We were humbled and caught off guard by his comments he felt he had to say to us once everyone else had left. Chris and I will never forget those moments or his words.

I CAN tell you that holding a sledge hammer is thrilling! BWAHAHAHA - the power that tool carries!

I CAN tell you that nail guns ROCK! I highly recommend purchasing one. I highly recommend you do NOT point it at the camera man trying to shoot a close up of you using it, though.

I CAN tell you that, despite the hiccups that our show incurred (I'll have to tell you later), we laughed and joked and poked fun at each other. There is something about wrapping the cameraman up in tape that just sets the mood for the day, you know??

And finally, I CAN tell you that our show SHOULD be airing at the beginning of April (it's already been moved twice, so don't hold me to this). DIY Network. House Crashers. We are Episode 1 of Season 4.

OH! OH! I can ALSO tell you that all of Josh Temple's "house tips" that will be run on DIY for this next year, were filmed at our house!

Whew! Well, I'm glad I got some of that off of my chest! Waiting from November to April sure is asking a lot! I can barely contain myself, short of just completely ignoring the subject altogether... which I find easiest!

Stay tuned and watch for our episode! Let the countdown begin!