Tuesday, July 27, 2010

what?

Last night I went to get dressed for bed and noticed that my left hip had a softball sized swelling under the skin. It has been hurting for a long time but the last few days it became more painful than ever and yesterday it really hurt. I haven't been able to get in to any of my doctors today --- and am unable to stand or sit or clime stairs or do much of anything without significant pain.

Next week we have family coming into town - and then the week after are supposed to go on a famiy vacation. We've been in the middle of a remodel and I have so many things on my list to do in the next few days ... but now here I lay unable to do anything. It is frustrating and easy to loose hope. Things like this seem to make the stereotypes even worse - will my family think that I am lazy to not have more on the remodle done? Will friends who are waiting to hang out with me think that I just don't care about them? They might. I guess all that I can do is not focus on what people might think - but to stand on what I know is true and in this case - i simply cannot do as much as I would like to do.

It's just part of living with chronic pain - you can't know what is going to happen and often the body makes decisions that you wouldn't choose .. ok back to resting for me. :)

Monday, July 26, 2010

YES!

Several years ago my sweet Daddy gave me a card during one of my hospital stays for surgey. On the front it shows a picture of a little girl wearing a swimsuit, holding on to a bicycle and a puppy on a leash. She is looking at a sign that says:
"NO dogs
NO swimming
NO Bicycles"

Sometimes having chronic pain makes me feel just like this little girl. All ready to do something fun, looking forward to dreams I have, but I find myself staring at a lot of "Nos". It can get discouraging. It can make me want to stop dreaming, stop hoping, stop planning. There are so many times that I packed my bags figuratively or literally to do something fun, only to find that I had to unpack my dreams once again. How many missions trips I had to cancel, jobs I had to turn down, friends I had to disappoint and all because of something that I didn't choose. Being sick has a way of controling what you can or cannot do - and it gets frustrating to feel controlled by this thing called PAIN.

There are many many stereotypes that people have of those of us in chronic pain. Many of them are not good at all. Many of them are all to often true. Many of them make me want to pretend that I never have pain, to lie my way through life so that I don't have to be part of this "club" that I didn't ask to join. But, if there is the chance that I can help one person through my being honest about my strugles with pain. If I can ease one person's loneliness even a little; if i can encourage one person to choose a different kind of happiness above the pain ... then the hours I have spent in pain will be worthwhile.

Maybe it would be helpful (in dispelling the stereotypes) for those of us who are facing pain (or any kind of suffering that threatens to steal away our life and dreams), for us to write down a list of the YESes in our lives. It is very true that the suffering of life takes things away from us. My Daddy used to call it "the death of a vision". But isn't it also true that suffering and pain can give things to us that are better than the dreams we dreamed? Here is the beginning of my YES list(in random order):

1.my girls Bible study - 10 + years of beautiful fellowship and mentoring with high school girls at my church - if i had been healthy I never would have been living there are would have lost this which has been one of my greatest joys in life.

2.working at the farm - i wanted to be on the mission field in Africa - but my health kept me home where I worked at the farm - which became the place I eventualy fell in love with the man I married.

3. relationships with my family. i would have chosen to move away right out of college - but God put me back in the place where I could grow closer to the ones I love.

4. opportunities to sing.

5. songs God gave me to write - most of my most precious songs have been writen in times of great physical pain.

6. being still and knowing that He is God. many years in bed and many sleepless nights from pain have given me time to pray and to focus the the very most important relatonship of my life - with my God and Creator.

What is your YES list? Rather than focusing on the losses from being in pain, let's encourage each other to focus on the Yeses that pain has brought our way. Find the roses among the thorns.

anti-social

The last few days have been interesting I think I say "interesting", when I don't want to complain and say that they were crummy. Well, now you all know my trick - so I guess I will have to find a different word to use when I cannot be honest and say that everything is "good", but don't want to complain and say that they are "bad". But no I'm now rabbit trail!

On Thursday we had a big doctor appointment that was disappointing.
Then on Friday I went to work at our old farm doing wedding flowers to help out (we moved so are no longer really working on the farm but they needed help with this big wedding and we needed to pay a bill). I got super dizzy and weak feeling, as well as sharp pain when I breathed in and had to leave early - and have been feeling dizzy, weak, light-headed and like I have an elephant sitting on my chest ever since.
All of that to say - that I have been waiting for almost 2 months to show our new house to my sweetest little sister and have her darling boys come and play with them in our creek - make cookies with them ... but when she headed over I had to tell her that I can't handle a long visit - so she, and my brother's family stopped by for an hour and then went off to spend the day at the farmer's market and make dinner together. I loved to see my nephews, and sis, and brother and sis in law. But I was feeling like passing out, couldn't make the cookies of even play much with the boys. My house was messy when I had wanted it to be so cute for their visit. And I felt like I pushed them out the door after a short visit. Everything in me wanted to go with them to the market .. but everything in my body wanted to just lay down and never move again.

Do people think i am anti-social? I am sure they do. And I wouldn't blame them one bit. But it hurts to want to be with others that I love so much, but knowing that I cannot do the things I want because my body is always ruining my plans. Is God bigger than these hurts? Does He have the power to redeem even the sadness of being unable to be with those I love? YES - one hundred times yes. Does that take away the sadness? Not really - but it DOES give me courage to smile and choose joy even in the tears. Holding on to His mighty and strong hand gives me strength to get up tomorrow and find ways to show love to the people that I care so much about - even if that isn't in being as social as I wish that I could

The choice to be in pain isn't given to me; but the choice to live a happy life and learn to be all that I can be is up to me.

and you.

Wednesday, July 21, 2010

p.s.

I need more ideas of stereotypes that people have of those in chronic pain! message me your ideas or email me at aliwenz78gmail.com

overdoing

Hi friends!

so one of the stereotypes that was shared with me was laziness. I think that sometime those of us with chronic pain can use our pain to excuse being just plain lazy .. but there is the flip side that we can also try so hard to prove that we are NOT lazy that we can tend to overdo it. I seem to often fall into this catergory. Today my husband was home from work and so we decided that we should tackle some landscaping that we need to get done in the yard. He worked hard at digging out invasive bamboo while I did transplanting and weeding and fertilizing. It was hot and sunny and by the time we stopped I was feeling pretty weak .. but we had more to do - little odds and ends with the kitchen remodel, and then some organizing of our back patio ... and ooh there are some more weeds to pull, harvest some greens ... and then out of the blue our bathroom ceiling began to rain .. and down the hall. A leak discovered in the upstairs bathroom, setting up fans and mopping up puddles. Oh and then I promised to make dinner for some friends ... Finally now it is 10:50 pm and I am finally sitting here tired from head to toe. Maybe too tired to sleep. At one point during the day I walked into the bedroom and looked longingly at the cozy bed ... "I really should take a nap" - but that thought was rushed away by all the demands of the day.

I think for those who don't have chronic pain it may sometimes look like our coping with pain (by taking naps etc) is laziness ... but there is a distinction between being lazy and being responsible with the body that you have been given. I still haven't learned the balance but am trying. Today I failed in pain managment and in overdoing to combat laziness. Maybe tomorrow I will do better!

Sunday, July 18, 2010

A Choice

I fully intended for Saturday to be a day when we could just rest ... I have not been feeling good since this move - and am just tired in every way. But my husband had other plans ... he said he had planned for us to go somewhere secret. I didn't have the guts to say that I just wanted to lay around watching movies and making take a bath ... there was a split second when I had the chance to choose to either have a bad attitude about his plans or to go along and see what happened. I choose to go ahead with his plan even though I had no idea what it was.

The moment we walked hand in hand into the garden I knew I had made a good choice. It was a beautiful magical rose garden and the fragrance of 5,000 enveloped us as we began walking around the garden. We spent hours there - smelling every single rose and just enjoying the glory of God displayed in His creativity in making so many beautiful flowers! The day was sunny and perfect! As we lay on the soft green grass my husband softly sang to me the verse from our wedding song which we had written together, "In a garden warm and bright, roses bloomed defying placement, down he knelt beside her there, the one made just for him. A promise made this day - for now and for forever: I am a yours, and my love, you are mine" .. my heart melted. How could I be loved so fully? And to think that I almost missed out of this opportunity to be with my husband in this exquisite place because I was tired! Even as we walked to the garden I had to make the choice to do it gladly as the path was very steep and my chest and legs were burning with pain ... I thought to myself: "I will not even mention the pain, because I don't want anything to take away from this moment that my husband put so much thought into." And God gave me grace and the pain eased away once we were in the garden.

One friend mentioned the steroetypes of laziness and wimpiness ... and I think those are far too often the truth about those of us with chronic pain. But we have a daily and often momently choice to make to put aside our feelings and make others happy - and in so doing we often reap the benefit of a day so beautiful that words cannot express!

Wednesday, July 14, 2010

manipulation part 2

so how can I - how can all of us with chronic pain NOT allow manipulation to be a characteristic of ours? Well, I think with me one of the big areas that I need to watch out for is wanting so badly for someone to understand how I feel that it can turn into manipulation really quick. So understanding that everyone has some kind of pain, and that no one can totally understand another person's pain is very helpful to me. Thinking of the other person not just my own needs and desires also helps. Another thing that leads easily to manipulation is making others feel guilty. I know that many of the people close to me have struggled with feeling guilty for the fact that I am in pain, and often they are not. It would be so wrong to play off of this natural responce when someone we love is hurting to feel guilty. What I try to do is to not rub in the fact that I am in pain all the time - and to give that person permission to not feel guilt. My illness and pain isn't their fault at all, and I try to encourage them to go on with life and enjoy what God has given them. But I think another key to helping those we love not feel guilt and be manipulated by it is to show them that we are choosing a joy-filled life as well. If I allow myself to sit around and feel sorry for myself, it could lead those that I love to feel guilty over the happiness in their life - but if I turn that around and enjoy the life that God has given me, and work hard at living a meaningful life it directly combats manipulation based on guilt.

Now, my husband would testify that I am nowhere near perfect on this, it is a battle. But I am trying and am determined to not give up!

Monday, July 12, 2010

A note from me

Phew! I intended to go more in depth with manipulation and ways that we can all work to not become manipulative or can recover from sinking in .. BUT today has been a day of weeks! So i just wanted to let you all know that I'm still here and what's up ...

My husband and I recently moved into a basement of my Grandmother (she lives upstairs) so I am doing some help at home for her and my husband is getting ready for school in the fall. Let me tell you, this moving and remodeling the basement has been quite something on my pain because I have been out of a lot of my ruiteins, don't have a bath, don't have as much time with unpacking and everything. Honestly, I haven't been coping with it well at all ... just burning myself out. But I think that getting back into blogging is actually a way to help me cope and to remind me to keep on top of my attitude even during times of transition and craziness.

so tonight i am going to finally sit down and rest and eat some pizza with my sweet husband and watch house hunters international! I hope you are all doing well tonight and if there is anything that I can ever pray for any of you please feel free to let me know!

p.s. thanks Lucy for reminding me to share about my own life and struggle!
love,
ali

Saturday, July 10, 2010

is anyone still reading????

Hi everyone - just a question if any of you are still reading the blog? and if I am helping your quest in any way .. I know I was away from the blog while moving and lack of internet and just wondering if I lost most of you??? I greatly value your feedback as I want this blog to be interactive.

manipulation

The word "manipulative" has been suggested as a negative attribute or weekness of those of us in chronic pain. Youch! I HATE this word a lot more than many words. I hate being manipulated by others, and hate the thought that I might be manipulative. I looked at Yahoo for dictionary definition and this is what came up:

Manipulate:
"To move, arrange, operate, or control by the hands or by mechanical means, especially in a skillful manner: She manipulated the lights to get just the effect she wanted.
To influence or manage shrewdly or deviously: He manipulated public opinion in his favor.
To tamper with or falsify for personal gain: tried to manipulate stock prices.
SYNONYMS:
manipulate, exploit, maneuver...

These verbs mean to influence, manage, use, or control to one's advantage by artful or indirect means: manipulated me into helping him; exploits natural resources; maneuvered me out of one job and into another. See also Synonyms at handle."

I think any of us who is serious about being the kind of person that God has called us to be would be truely ashamed (and rightly so!) to be called manipulative. So, why do people in chronic pain tend toward or at least enough have this trait for it to be a stereotype of us as a group?

I think one reason (NOT an excuse at all) could be that when your body is out of control - pain that you cannot do anything about, you feel like life is out of control. You plan things but then have to cancel because of a flair up of symptoms, you try new treatments and suergeries etc. only to be left in the same place you were before. You (I) feel like life is out of my control! Manipulation is trying to control craftily the actions or emotions of others. So it seems logical that when my life feels out of my control in so many ways, that I might try to control the lives of those around me. I could imagine that this could be unconscious on some level - but with honest self-examination would come to light. Another reason that this could be a "natural" sinful tendancy especially for those of us with chronic pain is that we LONG like a deep burning ache for people to understand us! So trying to get others to understand us when we feel widely misunderstood could lead to manipulation. Allowing others to see our pain so that they can know how bad it hurts etc.
Next I will examine ways to fight against this very destructive behavior. If you have thoughts PLEASE share! I am exploring this just like you!

Friday, July 9, 2010

Selfishness

Selfishness is one of the top weaknesses that attack the human race in geberal .. if you look at almost any sin it is usually rooted in selfishnes. Those of us in chronic pain are not immune to this constant temptation to be selfish - and maybe we are even more prone to falling prey. A hurting body is like a megaphone calling attention to yourself. When that pain is never-ending you can see how the temptation to selfishness could be consuming. If you haven't had chonic pain, think back to how you felt and acted last time you had the flu and then imagine that you feel that way every day for years or even your whole life. It should be pretty easy to see how unending physical pain brings a huge temptation of being self-centered and selfish!

Does this give those of us with chronic pain an out for behavng selfishly? NO WAY!!! what it should do is bring this issue and weakness to light so that those of us who are serious about living life well, will do all that we can to fight against this selfish nature! I have writen a lot about ways to help think of others above ourselves, encourage others ... but here are some practical ways that we can fight:

1. simply by focusing our attention on others - when someone asks you how you are don't always go into the details of your health and pain ... think genuinely of THEM. Like I have said before everyone has something the hurts them - so forcus on them not yourself!

2. ask God at the beginning of each day to help you focus on others

3. pick a person every week or every day that you will send a card of encouragment to - or call and talk about what is going on in THEIR life, think of fun creative ways to focus on them during that week or day.

4. read stories of others who are going through pain ... this can help you to get the focus off of yourself and on someone else and also help you see that you don't have the market cornered on human suffering!

5. read the book of JOB in the Bible ... talk about suffering - and God's answers to Job are pretty powerful for putting a selfish person in their place!

6. Make a list of blessings in your life - and when you talk to people highlight those rather than the pain.

7. appologize to those in your life that you have been acting selfishly towards .. tell them that you want to change and ask for their help.

Let me know if any of these tips help in your life and help to change the stereotype of those of us in chronic pain!

Thursday, July 8, 2010

Stereotypes to Avoid

Probably anyone you ask to give a definition of someone in chronic physical pain would point out some very unflattering descriptions. In fact, I often have a bad attitude toward people who are in chronic pain - and I am one of them! For the next few weeks I want to look specifically at some of these descriptions that people give, and look at ways that we as the ones under scrutiny can change the perseption of our condition.

Stereotypes are a mental picture that comes into your mind when you think of someone .... there are stereotypes for all sorts of people: homeschoolers (i have heard them all as I was homeschooled!), people from certain states or countries, eldest children, newlyweds, pastors, construction workers, wamart workers, gap workers, lawers, accountants, musicians, artists, teenages, elderly, 2 year olds ... some stereotypes are good and some are bad.

To help with my study the next few weeks, I need some ideas of stereotypes of someone in chronic pain that you may have - even if you have chronic pain you may have something to offer - and those who don't maybe you will have some good stereotypes to share. These could be good or negative, for to begin with I will be looking at ways to conbat the negative - Be honest! Feel free to ask friends and family as well!