Sunday, May 30, 2010
Hi my friend,
It sounds like we're in the same quandary. I've been really struggling with how God is going to use this battered body of mine. I feel so useless. Before POTS I was very involved in ministry at my church. I was a leader in a recovery group, and had my fingers entwined in it daily, along with the usual community and church activities. Much of the recovery ministry involved making phone calls (I sponsored woman with eating disorders and co-dependency issues), and leading small groups and also going to churches and sharing my testimony. I can barely hold the phone to my ear for more than 5 minutes, and now I can't stand and speak in front of people, the adrenaline rush use to be a good thing, now I get so symptomatic I can't finish my testimony, which is not good for this type or ministry. I've thought about using the speaker phone to ease the phone issue, but I can't put the woman I sponsor on speaker phone because of confidentiality issues, so needless to say, I'm not able to take my usual part in that ministry. Community projects are also difficult as you may know, not knowing how I'm going to feel and not knowing what the weather is going to be like can be a challenge. The church usually has sign ups for those various activities, but how can I sign up when I don't know how I'm going to feel on any given day. There's seems to be a medical reason for not participating in just about every ministry opportunity out there.
I have never been one to sit well, and at first I thought God was calling me to rest. Resting in Him is a very good thing (I had a bible study on Resting in Him just before I became very ill with POTS, and knew that God does call on us to rest). Before my POTS diagnosis I had been so busy serving I had exhausted myself. I thought God had called me to rest and be served. It's been 2 years, and I'm beginning to wonder if I may be wrong in thinking resting is what God wants for me, there has to be something more to this life than resting! But again I'm using my timing and my understanding, not His. Sarah had to wait till she was very old before she could finally bare a child, and she wasn't the best example of waiting patiently, but God fulfilled His promise to her, and her son became the father of a nation. It's in our nature to want everything now. I know this is difficult, I'm sitting there with you. Maybe God has called us to minister to each other, to comfort and encourage one another. God never meant for us to be alone or isolated. Maybe this is our ministry for now. On the bright side, the other day you acknowledged something I had said, and at the time I was feeling so invisible, you gave me the encouragement I needed to realize I'm not alone and I'm alive for a reason. You never know how just something small may be a lifeline to someone struggling. Keep being the amazing woman God made you, keep praying that you are obedient to His will, and listen to that whisper of God answering your prayers, God loves us so much, and only wants the best for us.
Before I wrote this letter I was playing a computer game, in my head I told myself I need to write to my facebook friend who is struggling with the same issues of not feeling useful to God, in my head I figured I would write when I was finished playing, but the answer I got, was get off this game and write to your friend now. I'm thankful God doesn't hit me over the head every time I want my way. I wrote to my friend, and received many of the answers I have been searching for. I had begun considering my computer as a place of prayer, since I spend much of my time praying for those in need, I thought that was my ministry, but I wanted more. Encouraging one another becomes the social connection I believe I was missing.
Therefore confess your sins to each other and pray for each other so that you may be healed.
The past two weeks I've been struggling with the emotional side effects of this disease. Being chronically ill has put me on self preservation mode. I have a tendency to experience a negative symptom from an activity, and then that activity is crossed off the list, never to be tried again. Well, before I knew it, almost everything I like or want to do has been crossed off the list. I'm doing very little, and have begun to become quite lethargic with my life. Here's a small sample of the things I have crossed off the list:
- Concerts: The loudness of the music causes an adrenaline rush, which then triggers brachycardia, shortness of breath and dizziness.
- Shopping: Unless I can find someone to go with me to push my wheelchair, I can't walk for long periods of time.
- Outdoor activities: If the temperature is over 75 degrees, I'll pass out.
- Night activities: I'm usually too pooped after 8:00
The list could go on, but I'm sure you get the gist of it. I'm beginning to come up with reasons not to do things I haven't tried yet, because I'm sure it will trigger some POTS symptom. To be honest part of me doesn't want to find out that I can't do this new thing either. Just one more thing to put on my can't do list. I'm very aware that I have allowed this disease to imprison me.
I became very aware of my lethargic behavior yesterday. I was playing computer games, recovering from my trip to the grocery store. My family was coming and going to different activities. Being Memorial day weekend many of my friends have special plans. I began feeling sorry for myself, oh poor me, I can't go anywhere or do anything. This disease is stealing my life from me, boo-hoo-hoo. I want to go to the beach, listen to the ocean calm my soul, see God's handiwork and feel the sand between my toes. I had a list for not going; the walk from the parking lot to the shore will poop me out, it might be too warm, I probably should go with someone, what if I become symptomatic and I'm by myself, my POTS symptoms will probably get in the way of my enjoyment, blah, blah, blah! Excuse after excuse. At that moment I lost it a bit, I decided to go to the beach by myself. Who cares if something happens, at least I'll be doing something I love. What I discovered was that I needed that beach trip to knock some sense in me, to at least try to do the things I love, and if I become symptomatic, so be it. Better to try something and MAYBE fail, than to not try at all. I'm not saying my trip to the beach was symptom free, brachycardia, nausea and dizziness were definitely there, but I would have experienced those symptoms at home. I went to the beach, I had a good time, and I survived! I was so afraid of becoming symptomatic, that I stopped living my life at all. I'm going to feel nauseous, dizzy, fatigued, tired and short of breath at home anyway, why not do the things I love feeling yucky. As Nike says, "Just do it!"
Saturday, May 22, 2010
Fact one: Those of you who have been reading my blog since the beginning know I love clothes, and love to shop. I may take my love of clothing a bit to far, I even worry about whether my pajamas match. It's a good thing that the panties labeled with the days on them aren't still popular, I would never be caught wearing Sunday's underwear on Friday (what would people think?). I wasn't always so fashion conscious in my youth though. My favorite Summertime outfits consisted of matching terry cloth shorts and shirts. For some strange reason I thought the shorts looked much better pulled all the way up to my armpits. Now I will give myself some credit, I was a beanpole, and I guess I thought if I pulled them up to my armpits, it would take them longer to slip down over my nonexistent butt!
Fact two: I didn't always want to be a teacher, in fact I hated playing school as a child, it meant I would have to write, which I hated doing (funny how things change). My big dream was to be an airline stewardess. Traveling to distant lands, romances with strangers, flying period was the ultimate high. My mom had a brilliant plan to help me with this glamorous career choice. When I graduated from high school she was going to send me to Germany to attend a Frauschule (which is a school back in the day, that teaches young woman how to be good housewives). That sounds so archaic now, I can't believe I was on board with this idea, I guess I'd do anything for my dream job (which I now believe is just a glamorized waitress). The purpose of this was that I would become fluent in German so that I could apply for a job at Lufthansa.
Fact three: My thoughts on marriage were quite unique. My big dream when I was in college was to marry a pastor. Being a pastors wife sounded amazing with me. I thought I would be perfect, I loved my God and His church. I loved to serve, I'm a pretty good cook for the many potlucks I'd be going to, being there to support my pastor husband while he supported his congregation sounded amazing. I didn't realize what a sacrificial life a wife of a pastor has, I'm glad God didn't grant that prayer, though it still sounds pretty cool. I did end up getting married, but he probably is the complete opposite to a pastor as you can get. For some silly reason I followed my hormones and not my smart brain. Though my marriage did last 23 years, 23 years of love, pain and deep suffering.
Fact four: My music choices are almost as random as I am. As a preteen and young teen I loved the Partridge Family. I swooned every time I heard David Cassidy sing "I think I love you". I liked BTO, Peter Frampton and Pink Floyd. But I have to admit I really, really loved the Go-go's, trying to dress like them, sing like them (I had a unrealistic biased opinion of my singing talents), I just wanted to be a Go-go! As a grown up, I mostly listen to pop Christian music.
Fact Five: I love to dance, though I have no talent for it. In my college years disco was quite popular, I would spend great quantities of time practicing my dance moves with my two best friends Bruce and Victor! We would take turns partnering like John Travolta and Karen Gorney, and then trying to do the hustle until we fell on the floor exhausted. Later in life, being a parent of teens, I would walk by their bedrooms and their music would wake up the inner dance diva in me, and my uncontrollable urge to dance would take over and I'd allow the dance diva to do her thing. Unfortunately my daughter considered my dancing entertaining in a not-so-complementary way, and my son would slam his door in utter embarrassment. Lucky for them the dance diva in me only comes out on rare occasions.
Fact six: I taste and smell color, the technical term is synethesia. I can see color when I'm eating food, and the color of the same food can change for many reasons. For example, a red delicious apple tastes yellow/brown, but the color I taste would depend on it's ripeness and variety. I discovered I had this special talent when a friend offered me some avocados from her tree, and I turned her down because they tasted brown. She asked me what I meant by tasting brown, and I told her that when I taste avocados I see brown when I eat them. She asked if other foods tasted like other colors and I said yes. It was then that I realized that everyone didn't tasted food in color.
Fact seven: I have had several dreams (maybe nightmares would be a better description) come true. I dream of people getting into accidents or being injured at work and that day the person I dreamed about has been injured in the exact same way as I dreamed. Often I haven't seen or thought of these people in years. It doesn't happen often, but I often question the validity of my dream until after reality has struck.
Fact eight: If I had unlimited time, energy and financial resources, I would go back to school and become a doctor. I have always had this inner sense of how my body works, what's wrong with me, and where the problems are. I would love to study and do on research myself, to get a deeper understanding of dysautonomia and how to cure it.
Fact nine: I was on a float once in a local parade. I wasn't chosen for any special beauty or talent, I was there because my precious little sister has cerebral palsy and they wanted her on the Elks club float. The Elks were sponsoring my sister, they paid for her crutches and anything else she needed that insurance didn't cover. The Elks club is filled with many kind and considerate men and woman who truly want to help those in need.
Fact ten: I'm really quite boring, and I can't think of any more random facts.
It's time to pass the baton or Sugar Doll award, and the Sugar doll award goes to (drum roll please) Laura Dysauto for her blog
The POTS ran away with my SPOONS. She shares her personal experiences with dysautonomia in a way that is easy to relate to.
Saturday, May 1, 2010
The first week, Goldie's is living it up at my house, she has a clean bowl, she's fed every day , and I talk to her whenever I'm in my room. Week two, Goldie is fed every day, I rarely say a word to her, and she's lucky if her bowl is cleaned once a week. Week three, I think maybe if I feed her less she won't poop so much, and her bowl won't need to be cleaned as much. Week four and a half, I wake up and think "what's that smell?", I look around the room, and notice Goldie's bowl is a greenish brown, and I can barely see Goldie and she's struggling to breath. I quickly clean the bowl, feel slightly guilty for not caring for my fish, and do a little better for a couple of days. By week five, the bowl is stinky and brown, and I'm thinking to myself, DIE Goldie, DIE! Finally after several weeks of abuse, Goldie goes to the big ocean in the sky via my toilet.
Lately I've given some thought to my poor goldfish's life, and thinking I might be reaping what I have sown when it comes to my treatment of Goldie. Lately I've been feeling like a fish in a bowl, watching the world around me living and going on with life.
Recently I went on my typical trip to the grocery store, and as normal, by the time I was done, I was exhausted. Behind me was a sweet elderly woman with a cane. My heart went out to a fellow sufferer of a body that was no longer working at 100%. By the time I was done unloading my cart, my body was finished. I knew I would barely have the energy to walk out of that store and load my twelve bags of groceries into my car. I slowly walk around to the side of my car, when I see the sweet lady with the cane walking to her car. She opens her trunk and gingerly unloads her cart, and is backing quickly out of her parking spot and driving down the street. I guess she had me fooled, I'm sure she could have taken me down with a gentle push of her cane. I finish loading my car, and drag myself to the driver seat, close the door, close my eyes, and try to will my heartbeat to slow down, to ease my gasping for air, to stop the world from spinning, and pray that I have the strength to be able to place my hands on the steering wheel so that I will be able to drive myself home before my frozen goods begin to melt. As my heart slows down and my breathing eases up, I slowly open my eyes trying to focus on the people and things outside my car windshield. As I sat there watching, I realized that the world around me was alive and busy. People coming and going without a clue that I was sitting in my car barely able to function. I felt so separate, and almost not a part of this world around me.
It's the same for me at home, I watch my children come and go, watch the people outside walking the neighborhood, hear about the things people do on the weekends, read about the fun things people are doing on face book, and feel like that fish in the bowl, seeing but not being a part of it.
At church, I watch the people come and go, catching up and sharing, but I can no longer participate in church activities so I've lost the connection, it's work for me to go from person to person. I now feel like a stranger to these friends I use to know so many precious details of their lives. I feel like I must sound like a broken record to them, my life is the same, I'm still sick, I still am blessed to work, and I still have an amazing family. When I do get the chance to talk to someone, I ask about how they are doing , but I seem to be getting a pat answer from many, I'm sure I must be doing something to get the quick answers, probably the fact that I'm not there and not connected.
Now I'm sure some of you are thinking jump out of the bowl and get out there and live. I guess part of the problem with that is fear, there are so many things that can trigger a crash of my symptoms that I don't want to pay for it later. I'm also so tired on the weekends after working all week, that I have practically no energy to expend on extra curricular activities. It feels like the last hospital visit took more than a few days and a chunk of change, it feels like a part of me was left in that lost and found room they left me in. I know I need to work harder at telling others what I need, but I just don't have the energy to do that. Part of me is becoming compliant to this life of solitude, but the other part of me screams for my old life, my busy others filled life. I wish this blog could be more inspiring for those who struggle with the same problem, but I haven't found the answer to this one yet, when I do, I'm sure to blog about it.
Desiring to inspire,