thorninmyside

People are often taken aback when I say that I am thankful for my illness.  There are many reasons that I feel that my MS diagnosis has been a blessing for me and my family.  I would have probably never slowed down and lived for the moment if not for MS.  I would not have been forced to deal with the deep-seated emotional issues I had spent my whole life holding in.  I would not have learned to let go of the small stuff and be (a tad) less controlling.

In the grand scheme of things our time on this earth is not about us.  It is about how we live our lives for God’s glory.  My trials and issues are really insignificant.  When you are able to step out of your pity party and look at the world around you, it is easy to see that I we don’t have it so bad.  I have learned about the plight of chronically ill people in third world countries- hello?  How can I complain when they have no access to healthcare at all?  There are orphans in Eastern Europe that are institutionalized for life (just put in cribs at the age of four) simply because they have Down Syndrome.  Babies that are suffocated at birth because of deformities.

I think of how much this type of atrocity must pain our Lord.  How He must yearn for us to get out of our own little self absorbed box and find ways to help those that are less fortunate and more oppressed than we could ever imagine being.

What would the world be like if we all took an interest in other people’s problems rather than our own?  If we focused on loving everyone we come in contact with instead of trying to leverage situations for our own benefit?

I have been just as guilty as the rest of allowing myself to wallow in my trials.  But, the Lord is speaking to my heart so loudly lately, particularly through a passage in Isaiah 58:6-12

Is this not the kind of fasting I have chosen: to loose the chains of injustice and untie the cords of the yoke, to set the oppressed free and break over every yoke?  Is it not to share your food with the hungry and to provide the poor wanderer with shelter-when you see the naked, to clothe him, and not to turn away from your own flesh and blood?  Then your light will break forth like the dawn, and your healing will quickly appear; then your righteousness will go before you, and the glory of the Lord will be your rear guard.  Then you will call, and the Lord will answer; you will cry for help, and he will say:  Here am I.

If you do away with the yoke of oppression, with the pointing finger and malicious talk, and if you spend yourselves in behalf of the hungry and satisfy the needs of the oppressed, then your light will rise in the darkness and your night will become like the noonday.

The Lord will guide you always; he will satisfy your needs in a sunscorched land and will strengthen your frame.  You will be like a well watered garden, like a spring whose waters never fail. 

Now, I don’t know about you but I am interested in feeling like a well watered garden and am thankful te Lord provides the guidelines for doing so.   

When you are living with a chronic illness having a support system is critical to your health.  Support comes in many different forms.  There is professional support from the medical community, there is emotional support from your friends and family, spiritual support from a religious community and belief system and physical support from medications, alternative therapies, etc.  However and wherever you find support is fine.  It is just imperative that you have a support system.  We were not designed to go through life alone and certainly not during difficult times.  And, let’s face it:  living with a chronic illness is one difficult time after another. 

We need people to come alongside us and pick us up when we are down, tell us what step is necessary for treatment, pray with us, hold our hand or slap (not literally, but with words as only good friends can) us silly to get us out of our funk.

So, how do you find support? Or, maybe more importantly, how do you accept the support?    Sometimes, it is so hard to let people help us.  Reaching out for support and building your support system requires vulnerability and it also requires you to have shed any residual feelings of denial about your condition.  Asking for help, admitting you can’t do this alone means putting aside pride and replacing it with relationship.

Here are ten things that have helped me in building a support network for myself:

1. Go small.  By this I mean, do not make it your goal to cast a net and build a support organization, rather than network.  Not everyone is going to be right for your team.  Don’t be so anxious to have support that you turn off your discernment and intuition.  I always remind myself that Jesus surrounded himself with many people, but only kept twelve in intimate relationship.
2. Number 1 was a word of caution is as number 2.  Resist the urge to go it alone.  If you are anything like me you want to get a big bullhorn, stomp your feet and scream “I can do this myself”.  Let go of that or you will push away the very people God has sent to be part of your support network.
3. Take advantage of the internet and technology.  I have met so many wonderful people through online medical sites, online support groups, the National MS Society website, etc.  Google your particular “thorn” and you will be amazed at the deep and supportive relationships you can build with people going through exactly the same thing as you.  And, someday, when the dust has settled on your new diagnosis, you can be a cheerleader to someone.  I have only been diagnosed since January 08 and have only been on treatment since July but have already had the opportunity to comfort the newly diagnosed as well as be comforted by invisible illness veterans.  This type of support is invaluable.  (at the end of this site there will be links to some websites I have found helpful)
4. Check out local resources.  Some churches and hospitals have support groups (although I always caution that support type groups need to focus on the positive and not turn into a group pity party) and many national associations have local chapters that can provide you with information on physicians, physical therapists, prescription assistance, etc.
5. Remember that family and friends are human and do not know what it is like to live in your shoes.  So, as much as they want to be there for you and as much as they genuinely care, they will say the wrong thing; ask the wrong question; give bad advice and make you feel like a burden at some point.  Cut them slack and forgive quickly.  They are (i certainly hope) doing the best they can.
6. Play on strengths.  If you have a friend that is great at encouraging but really gets uncomfortable talking about the details of your condition, then let that person be the one you call when you are feeling down- not when you need to talk about your injection site reactions, your bladder incontinence or the horrible phlebotomist experience!  Don’t write somone off just because they can’t be your whole support team wrapped into one person!
7. Be a good friend back.  Somedays, I am a grump because I am in pain, tired, blah, blah, blah.  But, I will either apologize in advance or go back and apologize if I have snapped at someone or not returned a phone call.  Remember birthdays, thank them for what they do for you.  Never, ever take your friends and family for granted.
8. Try not to be (what my friend Rebecca refers to as) a ‘Debbie Downer”.  Your illness is a part of you, it does not have to define you.  Allow the joy of the Lord to be your strength and keep a positive attitude.  You will be amazed at how many positive people that will attrace to you as a result!
9. In the same vein, be authentic.  If you are having a bad day, try not to put yourself in situations where you will have to put on the “happy” face and pretend you’re fine.  It is perfectly okay, and sometimes the best for your overall health, to call and cancel something than to overextend yourself and pay the price later.
10. Be true to yourself.  Surround yourself with people (virtual and in real life) that make you feel good, that support you without judgment and that love you, illness and all!

Be sure to check out these links for more information:

http://www.cafechronique.com

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http://www.cafemom.com

http://www.feelchicboutique.com

You will keep in perfect peace him whose mind is steadfast, because he trusts in you. Isaiah 26:3

I have not been able to take any anti-inflammatory meds for the almost two months since I was hospitalized for a pulmonary embolism in September (and almost died, but that is for another post :-)and discharged home on a blood thinning medication. When you are on such meds you can’t take ibuprofen, etc. because of the risk of internal bleeding. So I have been dealing with more pain then I usually do. Ibuprofen, albeit in quantities probably made for someone four times my size, really helped to control the neuropathy in my left leg. Tylenol ain’t cutting it and I refuse to take anything stronger because I don’t want my cognition affected- I don’t find the dizzy, head in the clouds feeling conducive to driving or parenting, etc.
Then to top it all off, my wonderfully supportive hubby has been working 72+ hours a week, trying to meet a deadline for a project at his job.  He really takes the brunt of the evening parenting tasks and I am exhausted from filling his (which used to be mine before I was ill) shoes this week.  My whole body hurts, I fell in the shower which just added to the pain in my leg and added pain to my foot, and have been having excruciating headaches, probably from the stress of it all.  My flesh wants to crawl into a ball, have myself a good ole pity party and go to sleep until I feel better.
And, the chronic pain has really left me feeling negative at times. The poor me’s set in. Why do I have to hurt like this? Why won’t God cut me a break for once? Don’t worry, He has already heard me say these things to Him…and then I sat in my Thursday morning Bible study last week. I listened, cried, laughed, prayed and learned with my fellow sisters in Christ for two hours. And it wasn’t until I left that I realized I hadn’t thought about the pain in my leg the entire time.

Which leads me to this verse in Isaiah. God offers us perfect peace, from whatever is ailing our mind, hurting our bodies and troubling our souls. According to the Vine’s Complete Expository Dictionary, perfect is used as an adjective (as it is in this verse) 91 times and comes from the root- Tamim. This means “perfect, blameless, sincere, entire, whole, complete, full”. So, this verse promises perfect, blameless, sincere, entire, whole, complete and full peace to those of us that keep our minds steadfast (steadily focused on) God. 

He also calls us to be patient in our circumstances.  Patient in this sense is not referring to the “hurry up” syndrome that is so common in our society.  We are used to going through the drive thru and the Mickey D’s employees goal being to serve us in 90 seconds or less.  Any longer than that and we get frustrated.  We call this impatience.  But, this is not what God was referring to.  Patience in the context of Job and Paul is usually traced to the Greek word- hupomone.  This means perseverance and endurance.  Patience is having the endurance and perseverance to realize that my physical pain, this thorn in my side, is temporary and on the other side of Heaven I will not experience it.  It is only for now and if I can endure (which through the strength of Jesus Christ I most certainly can) my patience will so be worth it.  I’m getting a new, disease and chronic pain free, body in Heaven someday!  That is worth enduring this life and it’s trials for-don’t you think?

Now, I don’t know about you, friends, but that is exactly the type of medicine I need, peace and patience for my pain. I, in no way, mean to trivialize or downplay the effects of living with chronic pain. I am there with you and there are days that it can literally suck the energy and desire to function right out of my day- if I let it. We do have a choice. And I want to choose peace over pain.  Patience in my circumstances.   It is my prayer that God gives me the strength to do that and provides the same perfect peace to you!

In II Corinthians 12: 7-10, the apostle, Paul, speaks about the “thorn in his side or in his flesh”, depending on the translation you are reading.  The definition of thorn in that context is a pain, suffering or physical infirmity.  We all have thorns in our flesh!  Some of us have more than one.

My biggest thorn is multiple sclerosis.  I was diagnosed with MS in January of this year and the journey through a new chapter of life, that is filled with doctors, opinions, chronic pain, fatigue, brain fog, etc. has become an adventure. 

When we are faced with a thorn in our side, we can fight it, we can ask God to remove it or we can embrace it and figure out what we are supposed to be learning from it.  That is where I am at right now.  What am I supposed to learn from this?  How can I help others through my experiences with a chronic and sometimes invisible illness?  How can I be strong enough in my faith to remember that God’s grace is sufficient for me, just like He promised Paul?

This blog is my journal of that journey.  Please join me!