Polar Ice

I just got out of the hospital on Wed.  Today is FRiday. Please forgive my silence here. Other than my struggle to breathe, there is not much to report.

The steroids have bumped up some of my symptoms.When I got home on Wed.  I heard dragging footsteps on our deck and heard a raspy voice --sounding like the speaker was at the point of death, --calling my name. I thought someone was hurt.  I ran to the door and looked at the peephole.  NO one. No car in the drive.  I finally had to admit that my stupid brain was playing its games and freaking me out by it.

However the steroids are good for something. Not just my breathing.  My swelling in my hands, ankles and feet is going down due to the inflammation killing action of the steroids.  I have 12 more days of oral doses.

The really good news is that while in the hospital,, and while on steroids, I did manage to lose 8 pounds  I have to be really careful now, not to regain.  I've started on the Eat to Live program once again. I am hoping this is adequate to, not only keep me from regaining but to lose some more. The last time I was serious about this method of eating...I lost 30 pounds in six weeks.

I know no one wants to read my thoughts about my body, weight or food...They are my "go-to" topic in times of communicating when I'm at an impasse and need to talk about something.

I've been trying to write a bit...I am meeting with horrible resistance in my own heart, when I try to write.Poetry seems a distant dream to me right now.  I have to say that I blame my  psych meds for that. They have leveled me, flattened me all out.  True--I  no longer wish to fall off the earth but it's a high price to pay for peace  No creative urges what.so.ever.  Not for visual art or writing. I feel that, without that inspiration, I'm just a flattened out door mat...plain. just there. inspiring no one to song or to cogitation....I cannot encounter what it takes to move souls to sing or even to think deeply.

Is this writer's block?  No, I haven't written enough to struggle with that. This is SOUL block. There is an impediment in my spirit.  I am divorced from my feelings.  And granted, that may not be all bad.  But as a creative being, it is painful.  I long to be moved deeply.  And that seems about as likely as a polar melt down.

A Helpful Site

I was contacted by a lady who wanted to post a site to my blog to possibly help some of  you readers who struggle with AS (Ankylosing Spondylitis---or in my case, Psoriatic Spondylitis)  In these two diseases the spine fuses itself together,causing disability pain, and as you will see on this site, many other problems as well.
Take a look, here is the link:

http://www.healthline.com/health/ankylosing-spondylitis/effects-on-body

Here is another site, only this one is for RA:
http://www.rheumatoidarthritis.com/latest-content?cid=raf_EM_MIUARAUAAEM0002&c=MIUARAUAAEM0002&moc=MIUARAUAAEM0002 

The Villa Dolorosa

Well so much for the "Bless me Lord" prayers...I'm back in the hospital for respiratory issues.  I read a devotion today that came in my email (http://www.biblegateway.com/devotionals/standing-strong-through-the-storm/)
And I was struck by the need for us to suffer...God carves out his image on us via the means of the knife (surgery) or chisel(artist) or crushes us and makes us into the shape that pleases him (potter)....all of these are Biblical descriptions of the way in which God Works in us....and if you notice, they all involve pain, re-shaping and hardship for the material that is in God's hands --US. 

Sure, we can pray for a life of ease and pleasure, but at what eternal cost to us?  We are not told in Scripture anything about Jabez's walk with the Lord or about his eternal destiny.  We ARE taught by Scripture that Narrow is the path that leads to life and the path is not one of ease and leisure. It is a road of suffering...the Villa dolorosa. If we seek to avoid that pain, that suffering, Jesus may just turn to us and say, "Get thee behind me Satan, for you do not have in mind the things of God"

God is crushing me. carving me. chiseling me.  May I turn out to be a thing of beauty, worthy of his service.

Jabez and I

I was reading my segment of the Bible for today (I am reading it through in a year) and came upon the now famous Prayer of Jabez:
 He was the one who prayed to the God of Israel, “Oh, that you would bless me and expand my territory! Please be with me in all that I do, and keep me from all trouble and pain!” And God granted him his request. 1 Chron 4:9

To me, this prayer seemed selfish when I first heard it.  I almost never pray for myself...and that is just foolish.  If I rely on others to pray for me, then they may not pray wisely or in line with what God's plans are for me.  I have thought about this before...that my prayers to God need to be for the purpose of praying for my sanctification.  For my provision.  For my relationships. For endurance. And according this this verse we are also to pray for relief from pain or even for an absence of it.

The question arises as to whether or not this prayer should be a model for us.  Yes, God granted Jabez his wish...but that was God's will for him...that does not mean that it is his will for everyone. HOWEVER, it cannot hurt to ask God to remove pain and to grant wealth. God is so faithful to me in answering the hundreds of prayers I pray to him daily....often very picayune requests...yet they are not so small that God is not interested in granting them. Maybe God wants to bless me but is just waiting for ME to request it. 

The words to the song "Blessings" assume that we do pray  first and foremost for ourselves.

We pray for blessings, we pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
And all the while, You hear each spoken need
Yet love us way too much to give us lesser things

'Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise   ((excerpt - lyrics by Laura Story))

 But I don't.
I do not ask God to bless me or grant me wealth.  As each need arises I put it in God's lap but I do not ask for blessings beyond that request.  Should I?  It feels odd to pray for myself. I think if I were to start praying for myself I would pray firstly for my sanctification.  I would pray to defeat sins in my life. I would pray that our needs would be met and an occasional blessing thrown in.

I certainly have been grown up  as by the chorus of that song.....I have had a thousand sleepless nights...and I do know that God is near. I've seen God work his mighty hands on my behalf...despite my physical suffering.Despite my mental suffering.

I'm going to try Jabez's pray on for size.  But it will be asked with great humility and some apology because it is an audacious prayer...and yet God felt pleased to honor it.
Maybe he will bless me too.


 

The Big One

Last night for the first time I tried Melatonin as I heard it is beneficial for NES (see the past couple of entries ).  I got up twice.  There was really nothing in the house to eat so I had a slice of deli turkey and swiss cheese--no bread.   And the next time I got up I had about 5 Ritz whole wheat crackers.

The interesting part came this AM. I tried very hard to get up at my normal time but ended up sleeping til 9:30 which is UNHEARD of. I think that the combination of having no food in the house and post poning my ingestion of whatever it is I find to eat...should work wiht the Melatonin...because there would be no way I could wake up and wait fifteen - thirty minutes before snacking.  I would fall sound asleep.

So tonight that will be my goal.

Today my neck is hurting incredibly badly.   It sounds like it's going to snap right off when I turn my head.  And this morning my right hand was more than twice it's normal size. I am not looking forward to cooking dinner. Standing and cutting and peeling veggies will be torturous.  I could use frozen veggies 1) I'm not sure I have them and 2) I need to make use of my fresh veggies as they are  going to go bad soon. and 3) they are better for you when they are fresh....although I have heard some evidence to the contrary on that.

I was going to go to see my doctor's partner yesterday...I've finished my steroid taper (12) days and the asthma is still an issue. BUt on reflection I decided I really am not bad enough to need to be in the hospital. Of course I am vulnerable to a bad attack at any moment....But I am going to wait...either for the "big one" or for things to mellow down.  Right now, I know there is not much else they can do for me.  However, yesterday I was wheezing and gasping and I tried to do a nebulizer and the motor ran but it did not produce any mist.So a bunch of phone calls later, and I'm awaiting delivery of a new one today. It's a very vulnerable feeling to know that should "the big one" come, I am completely without recourse.

So I am praying to avoid a hospital stay and all the weightgain that would entail.
Please also pray for my daughter Alexa (age 22)...she is facing some real scary health issues. Thanks

The Evening News

I have been doing some drawing on my tablet....I'm not thrilled with the results but at least I put out an effort.
I've been struggling with keeping my head in place as far as food goes. Tonight will be a big struggle. I had some frozen yogurt which was not terribly high in calories but it did bring me almost right to my limit for the day.  Which means I'm set up for a problem tonight.  I didn't allow myself any leeway.  I could maybe have one muffin but will I be able to keep it at that?

I"m going to do an "experiment" (which hopefully does not equal "putting God to the test).  Honestly I think God is standing at the sidelines, wondering when I will call him  to bat for me. I have never really prayed about NES or my night time forages in the kitchen.  Tonight I am going to ask him to make me super sound asleep and if I get up, make me too sleepy to want to go to the kitchen.

Lord, make it seem like an enormous amount of work to take out that muffin and nuke it.   No matter how you choose to address the problem Lord I don't need to tell you how to do it.  I just ask you to please help me to have self control. Help me Lord to honor you in my body.

I weighed myself today. No gains, no losses. Time to begin to get more serious.  I need to overcome my fear of an asthma attack so that I can begin to exercise.

I'm still waiting on my insurance company's approval to start the new drug - injectible super-charged version of Methotrexate. I really hope it helps.

I wrote my mom a long letter today.  Bared my heart and thanked her for a number of things.  She and my dad came over today....I took her out to pick out a hanging plant for Mother's Day.  And then I treated at Yo-Cups frozen yogurt restaurant.  On her way out the door when she kissed me goodbye she whispered, "Thank you for the letter."

Happy Mom's Day mom. I love you.

Did I Really Eat that?

I have NES which means "Nighttime Eating Syndrome"  I just bought a book on it yesterday...I first began to struggle with it when I was about16 back in the early days of my anorexia.They say there is a link between NES and anorexia but they didn't know what the link it.  I could easily tell them that. Anorexics are deeply ashamed of eating.They must do it in the darkness and privacy of night when they will not be caught. I would eat a half cup of ice cream and then be FURIOUS with myself that I'd given in. But you see, I was starving, literally to death. It very well could be that NES saved my life.

However, that shame and need to hide,still are inside me....so at night I wake between 1-4 X  to get up and get something to eat. If I don't give in, I will remain awake for the rest of the night and would suffer severe anxiety.  I've done this for 35 years.  every single night.  When I'm in the hospital I will ask for graham crackers several times in a night. It is deeply embarrassing but will-power is useless in the face of it.  I am hoping this book will give me the ability to overcome this disorder.

Because it is both a sleep and an eating disorder, it must be battled on two fronts. The book said people with NES have low levels of melatonin, so I will buy some of that and see if it helps. Meanwhile because I'm taking oral steroids last night, I was to face a long wakeful night with multiple "feedings"....so I tried to fight on the sleeping front. I have an herbal mixture that I make for my family and friends.  It is either for sleep, anxiety, or pain.  Now because pain often wakes me, it plays a role in my need to get up--I need to stretch and move and "while I'm up" will get something to eat.   And anxiety plays a role, if I deny myself the food, I get extremely anxious.  And finally sleep. I overcame the insomnia. I woke around midnight. I stood up but then had second thoughts.  I decided to go without that feeding. And I laid down and went back to sleep!! That was HUGE.

It's true that I then woke at 3:00....which is not an  uncommon time for me to end the night's sleep. I ate a slice of turkey breast and had a small clementine. I was still hungry. (with REAL hunger, not head hunger), so I made a slice of toast which I will deduct from my breakfast when I get up to cook it.  After that I was on my recliner wiht the laptop on my lap and I slept again til now, just before 7:00 AM.

So I think my experiment was a success.I don't know how safe these herbs are to take on a nightly basis. I don't know their effect when mixed with my meds.  I don't know how I would find that out. But I know I've never before been able to be awake and yet, not need to go and eat.

If you know anything about NES either treating it or if you have it yourself, please leave a comment....I would like to dialogue with you.

Bullfrogs and Yogurt

Once, I went downstairs to bring up my homemade yogurt from the dehydrator.  By the time I was at the top of the stairs,my breathing sounded like something inhuman. Like a bull frog being strangled.  I went for my nebulizer...hands shaking.  Heart frightened. Would I make it before I blacked out? I did. Make  it,that is.

And then I tried to put a mattress cover onto my mattress...about a half hour later. I got more and more frantic as I got less and less air. The mattress cover ripped in half. I threw it down and grabbed the nebulizer.  Hands shaking.  Would I make it before I blacked out?

Then I put the yogurt into linen bags to drain the liquid and turn it into Greek yogurt. I hung the bags from the handles of the cabinets over my sink so the liquid dripped into the sink.  BUT OH NO, one of the handles slipped off and the yogurt bag slipped and splattered yogurt all over the kitchen ....and all over me.

I filled the sink with water and Mr Clean and began to mop.  I mopped the half of the kitchen floor that got splattered....and I wiped the counters and cabinets. My breathing was more and more shallow but I didn't notice right away...I was focused.  I took my shirt off and rinsed it in the bathroom sink.  My husband came out of his room and said angrily, "What are you going to do, wait until you  drop dead?  Pack a bag and go to the hospital."  The dying bull frog protested.


I grabbed my nebulizer.  Hands shaking.  Would I make it before I blacked out? Once more God was on my side.
I realized I need help.  Three nebulizers in an hour and a half is not a good sign.

1) I need to stop pretending like I can run my household.  I need help.

2) I am bound to get steroids. Either through my mouth or though a needle in my arm.  I know that if I take them orally, the chances are VERY good that it won't work and I will still need the hospital and said needle.  But I have to try.

3) I pour 6 10 mg pills into my hand and swallow them. I know it means an upset stomach and probably no sleep again tonight. (yeah, there was none last night either but that's a whole other story).  I will take 60mg for two days, then 50 for two days, then 40 , 30 and so on.  If I get no better in four days, I will pack it in and tell my doctor I need the hospital. But I won't have to tell him. One listen to that bullfrog is all he will need.