It just hurts so much...

I've been trying to figure out why "when it rains, it pours."  I absolutely cannot believe what is on my plate...let's see - I got "terminated" from my phlebotomy school because of my "attendance problems." (those being i chose to be with my husband while he had major brain surgery and meningitis, and even left him in the rehab place and went to my clinical, and even went to my clinical while still having a small bowel obstruction...needless to say I had to leave early); then there's the hubby having head problems. His cancer has returned, however it's not an aggressive one, but it's location tends to cause a lot of seizure activity. He will have to have another major brain surgery to remove a 4'X4' piece of skull and have it replaced with a plastic cap because they feel the infection is in the bone as well a spinal fluid. He's home right now hooked up to IV antibiotics, and I'm also taking care of his wound care. And then there's family--one can never please anybody, but I was completely shocked and heartbroken at the criticism I received from a close family member who has announced herself "done" with us because we "just don't get it." She's right - we DON'T "get" and refuse to receive the criticism leveled right between my eyes. I was so proud of my husband dictating a response from his hospital bed, in the middle of not feeling good to defend and praise me. I have indeed worked so hard, and took over all the CNA care of him for his first 5-6 days in the hospital-all except fetching water. I did the bathing, changing linens, jumping up for this and that. While he was so ill, I was going to take care of him. Once he was feeling a lot better, I let the CNAs start taking over their responsibilities. I'm glad they appreciated my efforts. I'm not glad they started expecting them!

Anyway - I just needed to vent. I'm dealing with the twilight zone when it comes to my school program and how I'm being treated. It was my hope of a job I could physically tolerate, and now they've jerked it away in a very vindictive, victorious manner. Seriously! I am not in the least exaggerating and I have many classmates who have had similar experiences.

I have no idea how I'm supposed to handle all of this. I just don't! I can't control people who choose to act horribly. I don't know what my next step is. My oldest son's hours are being slowly cut as the tourist season dies down, which means we may have trouble paying all the utility bills this month. It's only been my oldest two's income that has kept us afloat, along with my "TN Momma" (God gave me an extra mother 13 years ago...what a blessing!) carrying 100% of the mortgage 4 months straight, and at MINIMUM 50% of it since Brad's vacation time ran out. Usually she's paid more like 80%. And she can't afford it! She really can't! if I can't come up with money to put towards it, she could miss a car payment, or another vital payment. It's becoming that dicey. I cannot let her suffer because my life has exploded.

Where's God in all of this? He's here. And I know we'll come out the other side of this. We're holding together so strongly as a family, working cooperatively, appreciating each other, giving respect for the efforts each member makes.

I don't handle injustice well - particularly in my own life. Oh how I want to rain down vengeance on those who have been so horrid to me during this awful time. But that's not my place. I must remain a person I can be proud to be. I don't want to have fault in this situation, something they can rightfully hold against me. At this time there is nothing (in the realm of "reality") they can hold against me except choosing to go with my husband to the hospital for serious brain surgery. When I started the program he was stable. If I could've foreseen this would happen, I wouldn't have started the program!

Every time I think about all of this, I have to remove each item of grief off of my plate and set it aside. I'm getting better at  refusing to fret about things I can't fix today.

But I'm heartbroken. I'm so sad. I'm indignant and appalled. I'm hurt. Those aren't easy feelings to carry around. I did my more than my best and not only was it not enough, but it's being spat on as if it was nothing.  It just hurts so much.

What are these ads doing here?

Part of a way I can earn some extra money is by allowing some targeted ads to my blog pages. They mostly come from content within my postings. page views alone help, but actually clicking on an add gives me more money. In a weeks time with little traffic I made a total of $4.26. I realize that's not a lot, but it adds up, especially as I'm able to get more traffic directed my way. If I've written someone you think a friend would be encouraged by, I'd love to know I've helped someone. If they click on an ad so be it. So please do feel free to copy my link and send it to others who might be helped or inspired  (or want to argue).

I think once I'm hired at a phleb job I'll remove all ads from my page. For now it's extra income and any creative way I can can create it I must. Thanks!

Adjusting to a new normal and finding the time to do it

How do people find their new normal? I've done it a few times now, and it's always been simply step by step by step. It's usually been a new baby joining the family. Then it was no longer working and dealing with back surgeries, procedures and constant pain. We had a HUGE adjustment time when hubby had his stroke, but we were getting there! I even went back to school, something already in the works when he got sick, but I just changed my direction a little bit to get to work as fast as possible. For almost 6 months we watched him get progressively better. And then one day he woke without most of his recovery and went backwards everyday, and faster each day. Finally we found out something very serious was very wrong after I completely went nuts and demanded some testing NOW, not next month. Of course there was something wrong! His cancer came back, and right on schedule. (I keep wondering if the doctors had really listened to me we could've caught the cancer while it was treatable...there are never answers to those kinds of questions.)

So. It's cancer. And I found out tonight how much they didn't tell Brad when he beat it the first time-that the survival rate was only 70-80-% for 5 years. If he'd known that, I think his experience that summer of radiation, being completely alone as a young kid all summer in a strange city, very differently. Maybe it was best he didn't know his life was still in very real danger. But he had the right to know, and I am completely finished with doctors withholding information, which I think they do to avoid dealing with the emotions of their patients. Maybe there are reasons I don't understand, but in the age of google, our amazing neurosurgeon STILL failed to tell us the truth that Brad's life is really in danger. He actually said "I don't know any of that - it's not my job! I just get the specimens the pathologist asks for." Of course he had no idea who's job it WAS to tell us what in the world we were dealing with. Why they were arranging chemo, and suddenly cancelled it. Is that good or bad?! I asked the doctor "So you're comfortable with hubby just walking around with cancer growing in his head," and he actually gave a resounding and cheerful "Oh yes!"

Exactly how, while I'm working on getting a new home healthcare worker trained, fighting with the ridiculously stingy medicaid to get a son's bone surgery done, and doing my clinical hours at a hospital 45 min. away from home with just one car in the family, am I supposed to make the calls to the 10 or so cancer groups and advocacy and information agencies? If I had any cell coverage on my commute that would be the PERFECT time. But naturally I don't have cell coverage even if I could find my blue tooth. If I work the 5;30am-2pm shift, I get off just in time for all East Coast places to close.

I am dead tired. Really and truly tired. But you know what? Brad is at peace. What a blessing!

Is faith by default still faith?

So I'm not thinking of changing religions (I couldn't anyway since I don't have religion but rather a relationship with the One True Living God), nor abandoning my faith. But there have been some days when my faith has been in place because the absence of it was an intolerable concept. I simply could not fathom how to survive without it, so I chose my faith that day.  Is faith a choice, a verb? Is it a feeling? Is it both? Neither? 

What I know for sure is that I've endured far more physical suffering than I expected from life, and more emotional distress as well. I had a very naive idea of how much suffering each person should be allotted in life.  But I don't see, now, why I should be exempt from the worst life has to offer when millions of people live on the edge of it or smack dab in the middle of it. I don't like it. I don't exactly know how to feel secure or at peace when more calamity could strike tomorrow. 

We've been told we should play the lottery because the chances of my husband having all the things happen to his brain that have happened are astronomical.  

Do some people who seem to have a charmed life just make better choices and somehow avoid suffering, or do they keep it to themselves, or do they have a better attitude about it than I do? I don't believe in silent suffering, however, I think there is such a thing as quiet suffering that brings one to a new level of knowing God if we let it, if we are willing to maybe talk more to Him about it than others (yes, I'm thinking about it for myself, but I have to think out loud first). I don't think my life should be defined by hardship endured or suffering suffered, but rather my relationship with my heavenly Father and what HE has done in my life rather than what *I* have endured or accomplished. 

But pain naturally makes a person turn inward. It's easy to become very self-focused. Pain screams for attention. It is a consuming beast.  The challenge in living with it is to continually refuse that inward focus and turn back to that outside ourselves. It's not easy, nor does it feel very good to do at first, because when we focus on our suffering it almost feels like justice, like I have the right to think about it, wonder about it, and generally be busy with it rather than being Christ-centered and about the work of building God's Kingdom.

Hmmm......I'm still thinking.  

I actually made it through an entire work day today! No tummy troubles or any other trouble. Just fatigued the last 2 hours, but I did get up at 4:45am, so I guess it's understandable, and I'll build endurance. I've discovered that I'm very tightly wound up still, so the moment I feel on the spot (like every time I draw blood as I'm being scrutinized!), all that I know suddenly disappears. I literally feel at a complete loss as to what to do!! Today was good, though, because the gals training me understood and helped me to focus in and calm down ("Just breath and don't talk"...LOL!) 


I don't know how to unwind this thing in me though-I feel like one thing hitting me the wrong way and I'll completely explode with sprockets and springs flying every which-way. Not an emotional explosion, but a CATHERINE HAS GONE TO PIECES AND IS SITTING ON THE FLOOR DROOLING kind of explosion. The dr says I have too much adrenaline coursing through my veins from all that's gone on not just this last 3 weeks but the last 14 months. Hopefully the med I've been given will help because it's a very unpleasant feeling to know you are on the brink of mental and physical collapse.


We definitely underestimate the value of quality rest. Oregon Health Sciences University hospital has virtually NO resources for patient's families, particularly those in ICU where family member visits tend to be limited, and absolutely no sleeping in there allowed (I kid you not - a woman in her 8th month of pregnancy literally closed her eyes at 8:37 and was woke by the nurse at 8:39 and not that kindly told "You CANNOT SLEEP IN HERE!" I realize there's a need for rules, but what sense does it make to not give a family member a blanket for the night while they sleep on the teeny couches in the very cold waiting room (it's too warm in the day and blowing cold air at night). I asked for a blanket and was told "If I give you one I'd have to give EVERYONE one." Uh, ya! That would be a GOOD THING!


I think I have no real point to this blog entry except that I had a very very rough time at OHSU while Brad was there, though the 2nd week was slightly easier as he was in a private room with a couch of sorts for me to sleep on, BUT by then I was so exhausted that my stomach quit working and I ended up in the ER twice, and should have been admitted the first time, and was on my way (literally being rolled down the hall) to surgery the 2nd time when a resident came running up after 12 hours in that ER gurney and said "We've had another meeting around your ct scan and we've decided you're just fine and good to go." I think the senior attending physician let the residents play with me and learn from me and only intervened when they decided to cut me open. And he did it knowing I was there with my very ill husband and needing to get back to him. I'm just guessing, but I think there is probably some truth in my guess.


I'm very happy that I did get through a full work day, without any special needs or looking obviously ill. The ladies at the lab told me my color was much better and white just didn't suit me :-)  Being white sure didn't FEEL very good.


Well, it's 8pm and time for bed if I'm to survive another 5:30am-2pm shift tomorrow. I never thought I'd like such a shift, but it's great getting off work so early in the day, and the morning goes really fast. The afternoon slows down and it can be very boring. I don't like sitting around with nothing to do.


I would love your prayers for strength and endurance for me. I'm in a lot of pain tonight with a swollen back causing both legs to ache badly. I'm burning through my ice packs. Pain medicine isn't touching it, and I don't want to use pain medicine anyway! I'm thankful for today, and for the beautiful drive by the ocean for most of my commute. Seeing the ocean always puts my perspective in it's place.

Step by step from death to life & walking in some very groovy high heels!

So I wore my only pair of heels today. I LOVE them! I think they are really great shoes, and they're so comfortable. What I wore to church today was the 7th outfit I'd tried, and it was SO GREAT to feel like I actually looked good. I've lost 160 pounds (but gained back 40 this last year, so my net loss is 120). Anyway, it's still a LOT, but I have 120 more to go (though even 80 would have me looking so much better).  I think I'm nearly at the place where I don't look terribly obese and it's my number one noticeable physical trait.

For quite a few years I tried to hide. It's very hard to hide when you weigh 365 pounds. Yup, I said it out loud. That's the last time I weighed. I quit weighing after that and I know I must've had another 25 on that before I started loosing. When you're morbidly obese and trying to hide but have to go out in public anyway, oftentimes you start wearing darker colors. Or neutral colors. Certainly nothing bright. I didn't wear any shade of pink for 10 years. I didn't wear any jewelry except simple earrings, maybe a very small necklace. I had my hair cut short so it wouldn't stand out (I would've looked better with bigger hair probly). No highlights. Nothing fancy.

Not only was I hugely obese, but I felt physically HORRIBLE. In fact, I felt like I was dying and I believe I was. It's hard to get up and get dressed when you're dying.  I was diabetic, hypertensive, hypothyroidism, low kidney function, my adrenal glands were over-producing cortisol, which gave me the look of someone on prednisone (moon face, buffalo hump, major fat around the abdomen). I was in a great deal of pain, all the time, and on ENORMOUS amounts of pain medicines on top of all the other medications that were trying to control my disorders. I am the 1 out of 100 who has very few opiate receptors in the brain. It takes 4-5 times the dose for a normal person to do the same thing for me. I almost always have to have a nerve block for any dental procedure because my body metabolizes things like lidocaine way too fast. I have felt almost every stitch I've ever had sewn in because doctors didn't believe I didn't know the difference between pressure and pain. The point is that it took SO much pain medicine to keep me from hurting so bad I wanted to be dead.

The problem is that when you're on narcotics for years, they turn your brain off. It becomes incapable of handling any pain. There's a reason our brains produce endorphines and other things like oxcytocin. Those hormones give us a sense of well-being and energy and help control pain. My brain couldn't do that. It couldn't do anything, so I was on a bunch of anti-depressants and anti-anxiety meds as my brain couldn't manage anything but keeping my heart beating and my lungs breathing, and THAT was becoming hard.

I ended up having to take heart medication because my heart was skipping beats and going way too fast. I was short of breath all the time. One of my arterial blood gas draws showed only a 64% oxygen level in my blood. It should be close to 100%. Anything under 95% is reason for concern.

I was sick. I was dying. I knew I was. I know I was. And though my children weren't neglected or ignored, I certainly wasn't being the mother I wanted to be, nor the human I wanted to be.

If I didn't have children, I believe I would have died. It would've been so easy to lay down and die. Literally. I could've let go....so easily. It would've been a blessed relief. I considered going ahead and dying so my kids could get a new mommy, a better mommy. I told Brad if I died I wanted him to move on as soon as possible and find a good mom. I'd been hospitalized 13 times in 10 years, the last time being incredibly serious. I almost died from low potassium, and the doctor was sure I had a blood clot. I was given heparin therapy and they chased the clot all over my body with ultrasound and scans but never found it. Maybe it wasn't there. Maybe the Heparin broke it up. The doctor was very sober, and I said "I need you to keep me alive, I have kids!" He said "I'll do what I can." You see? I knew I was dying and would die if I didn't stand up and live, get out of bed and live, get dressed and live, get out of the house and LIVE. So, I decided. In the Psalms, David said "I choose life!" So *I* said "I CHOOSE LIFE!" The Psalms also say "Where there is life, there is hope." As long as I was breathing, I had reason to hope, and I clung to that hope that for some time was based entirely on the fact that I woke up again another day.

Step by step, one drug less at a time, one pound less at a time, one more trip out of the house at a time, one more time going to church again, one more time going to choir practice again, one more time driving to see one of the kids doing a Bible quiz-meet, one more time going to the grocery store.

Step by step by step by step by step I walked from death to life and into high heels.

Do I really believe what I believe?

I'm listening to a beautiful worship song called "I need you more" and it's got me really thinking how much I depend on God (or not) for my entire life, every breath and heartbeat and not just for getting me through hard times and praising him in the good and the bad. "I need You more, more than yesterday, I need you more, more than words can say, I need you more, than ever before, I need you more, I need you Lord. More than the air I breathe, more than the song I sing, more than the next heartbeat, more than anything, and Lord as time goes by Lord I'll be by Your side, cuz I never want to go back to my old life...I need You more...."


Thursday night at worship team rehearsal, before we got started, I shared a little about our needs and what we're facing. There's a song called "Blessings" by Laura Story, and one of the lines is something like "if it takes a thousand nights of tears to bring me closer to you...." and I said to my friends "have I reached a thousand yet?????? I die by inches sometimes watching Brad fight SO HARD for the simplest word or task. Today he was able to make his own sandwich. That is a SERIOUS VICTORY around here! 


I don't know where the comfort in the night is. I recently wrote about the terror of the night. Pain still stalks me, but I have it caged fairly well. What stalks me now is that I honestly do not know how to take comfort from my Heavenly Father who has allowed me to endure suffering beyond what I ever imagined I'd face. I think we all of us have to come to a day when we realize we don't have any RIGHTS to avoid suffering, whether or not we follow after Christ. But I guess I thought I would FEEL something that would pull me through the terrors of the night, and instead I found myself flat on the floor in a ball, wishing to God I could sink lower into the floorboards and disappear. 


Am I depending on God? I honestly don't think I have a clue how to. I've never had a dad. Oh I have a father. But I've never had a daddy who could see me through his own addictions and dysfunction and care for my spirit. God is my Father in heaven, and He promises to be a Father to the fatherless. That's me.  I wish I knew what it was like to curl up on a daddy's lap and know for that moment everything is ok.


I've been laying here thinking about next week and Brad's brain biopsy. He's already been through so much, and I've soldiered through with him, and I've sometimes pulled him through and forced the doctors to look again. It's taken an incredible amount of FIGHT to get them to realize SOMETHING IS WRONG and SOMETHING HAS BEEN WRONG! Have they ignored me so long that this can't be fixed?


And what if it's the cancer come back? Brad beat it once. We knew it was the kind that could come back 20 years later just to mess with you. We didn't expect it to arrive exactly on schedule for petesake! 


I can't fight that battle for Brad, and I don't want him to have to fight it. If it's an infection, the drugs needed to kill it could also kill his kidneys for good this time. He was 12 hours from being put on dialysis a year ago. Will his kidneys recover this time, when right now there are signs I can SEE that they're not doing their job as well as they should?


Or what about the autoimmune angle? That's probably the worst answer, because then he'll go on serious immunosuppresant drugs. Kind of like chemo. They make you feel like hell, and you are so incredibly vulnerable and I'M ABOUT TO GO WORK IN A HOSPITAL!!!!!!!!!!


I don't know what to do with these things. I don't know how to think about Brad having to deal with a stranger in our home while I'm at work instead of ME, who can read his face and eyes and just simply KNOW what he needs.


I'm a fixer. I like to save people. I can't fix him. I can't save him. I can't fix ME!


The last member of my household that hasn't been on mental health drugs is going to start them. We're all so wound so tightly we're cracking up in slow motion. It takes so much energy to even WANT to do anything, including brushing my teeth some mornings. How are my children supposed to focus on their studies? For one of mine, I think they're a great escape. For another, I think it will become that. For my 3rd, I think this year is going to be really touch and may have to just keep him homeschooling and doing the causal thing that has always worked for us. He can't tolerate any more pressure, and he doesn't like disappointing people. I think the teachers will be kind and really work with my kids. They understand that sometimes people choose online public school because of difficult family situations that are distracting and overwhelming. I need eyes on my kids while I'm at work.


I'm very blessed to be surrounded by an AMAZING church family, as well as "real" family that cares so much. I know I'm not alone in this...but then again I am. I'm the only one who can do my job. I'm the only one who can run this show. I'm completely inadequate and barely coping with my still chronic pain issues. Right now it would give me great joy to simply not have legs. They ache so deep from the pinched nerves in my back that it's like a hard rod of steel pain being hammered down my leg bones.


Another thing I said last night was that God has ALWAYS met me at the end of myself, but I often believe I'm really really there by now, but God isn't, which means it'll get worse before I finally DO arrive at the end of myself. I don't like it.


For tonight, I choose to believe. I can't do otherwise. I won't make it. So I'll hold onto the verse God gave me a couple weeks ago that has really meant so much for me:


We give great honor to those who endure under suffering. Job is an example of a man who endured patiently. From his experience we see how the Lord's plan finally ended in good, for he is full of tenderness and mercy. (James 5:11)


The other one I hold onto is "I count my suffering not worth mentioning compared to the glory that awaits me."  I hold onto that one SO tightly.  I'm waiting on the Lord's return, and I know when I get to Heaven, be it because i've been swept up in Christ's 2nd return (that would be awesome, God!) or if I get there via the grave, it'll all make sense, and until then, I just have to hold on, hold on, hold on, and let others keep a good hold on me too. How blessed am I to have so many who have such a firm grip on me?

It's 430am again...

...and I find myself awake...again. So frustrating! I have a LOT to do tomorrow, including finding a folder with all my documentation needed for traffic court monday. I have to make a special request to see the judge to ask for the charge of driving on a suspended license to be dismissed, but normally they don't allow a person to see a judge unless you plead "Not Guilty" and have a trial! I think I should have the right to as for a dismissal when I'm expected to make my plea! They mailed the notice that I owed $50 on a 3 year old ticket to an old address, so I've been blissfully driving around suspended for some time. The find is $500, and I imagine my car insurance will go up if this goes on my record as well! My house has been so well cleaned that my folder has disappeared. Maybe I'll take some benadryl and hope it makes me sleepy enough to get some more sleep on a night that hubby is also sleeping for once!

God carpooled with us (repost from FB)

Finally in jammies, enjoying the AC, basking in the accomplishment of my very last quiz & knowing only 3 days of class left! Exactly 8 days til I'm finished with the classroom part of my program. I'm still in shock I signed up for it, yet I'm practically done! The last 10 weeks have flown by! Brad's had a very good evening & has been able to communicate well and even joke around with his Pop. Now he's happily tucked in, my chickadees are at home (2 of them are likely NOT tucked in...GO TO BED!) and I have some solitary time in the dark. The last 8 days have been really tough, reminding me of the first weeks after Brad's stroke. I thought we would be having a 1 year anniversary (Aug.23) "I beat my stroke" party for him--instead we find ourselves in crisis again. I'm so thankful for the amazing support of my family and friends...I know that love and support, and the daily bath in the Body's prayer, is what makes me able to get up for another day of who knows what will hit us. It is *excruciating* to watch Brad struggle...and inspiring. He keeps on being the good-natured, gentle man he's always been, and he tries & tries & tries.... I've never seen anything like it. He accepts so much loss with grace AND hope that it's just temporary. If he could learn to read, write and walk again one time then he can recover what's been newly lost. While we hope and wait, we endure. Brad wants me to say "God is with me, so I am ok and I will be ok. Tell everyone. They need to know!" Today my heart felt broken, and I was so utterly overwhelmed, but then a small kindness from the courthouse clerk gave me strength to get up and face the day. *Never EVER under-estimate the power of a kind word or deed!* Once on our way to Salem God gave me exactly the music/message I needed (that Natalie Grant song Misti sang Sunday was the icing on the cake.) Singing along "Jesus, name above all names, You are high and lifted up...." reminded me that God inhabits the praise of His people. The Lord car-pooled with us to the valley! It's the first time in forever that Brad didn't sleep through the drive. The music reached into his brain, just as it did when he was still unable to speak or understand speech last year, and broke him free of  a bit of the prison he's in. What a day! If the Lord will oblige, I would like to put in a special request that either tomorrow is painfully boring, or Jesus returns.  "We give great honor to those who endure under suffering. Job is an example of a man who endured patiently. From his experience we see how the Lord's plan finally ended in good, for he is full of tenderness and mercy." (James 5:11)

The terror of the night

...for many years, tv during the night has been the thing that has kept me from completely going insane. Being in pain, in the dark, alone, is awful. I used to wander the house for hours, crying. When my children were quite small, I'd go to the furthest end of the house from their rooms so they wouldn't hear my crying, and I'd sit in the laundry room in a stack of laundry waiting to be done, and cry and ask God "Please, take this pain or take my life, but please please don't leave me here with both." I don't know how many hours I spent on top of Mount Laundry begging God for relief.

I learned to block out some of the pain by turning the tv on during the night. We never used to have tv in the bedroom. I didn't believe in it. The bedroom is a sanctuary. I'm trying to make it that way again, and today I had the perfect opportunity...but I choked. Nighttime is still pretty scary. I have a choice to drug myself into a stupor, or try to sleep more naturally and brave the dark alone.  Now that hubby has had his stroke, I have nobody to wake in the night and just say out loud "I'm in so much pain, I don't want to be alone." Saying it out loud and letting him go back to sleep is a great comfort to me. I'm less alone. It's been acknowledged.

For now, it's Criminal Minds reruns. And on nights when I'm not starting out hurting as badly, I've been trying to go to sleep to audio books. It must be working as I keep having to rerun almost to the same place every next night! plus it keeps the lights off, which helps my brain shut down. And if I wake in the night hurting, I can keep my eyes closed and see if the audiobook is enough. I can't usually listen to music to go to sleep because I get too involved in it. I've made music all my life, so listening is very active, rather than passive, and wakes me up.

It's been a very long 13 years since I had my first back surgery - a brutal fusion because of a freak injury 11 years before that fractured two vertebrae and caused a severe misalignment of my spine. Poor alignment equals poor mechanics. Poor mechanics prematurely wears out parts. By the time I had the fusion done, my right foot was dragging and catching at times and I was in constant, practically unspeakable pain. I waited too long to get it done. I was so afraid. But waiting so long caused permanent nerve damage from the pressure of my vertebrae pressing down onto the nerves due to the disc being nearly completely degenerated. There was little to protect the nerves from damage.

The surgery itself was far worse than anything I imagined, and I did a lot of imagining. They cut me open not just on my back, but on my abdomen. They accessed my spine from front and back, as well as cutting bone from my pelvis, then taking bone from the bone bank (cadaver bone), and then removing what was left of the disc and replacing it with bone, and screwing it all together with 5 screws and 2 rods. It's a very impressive X-Ray to be sure!

They promised me I wouldn't wake up in agony (doctors should NEVER make such promises) because they would insert an epidural, similar to the pain relief for childbirth. But it didn't take and I woke with no pain relief and the most terrifying pain. Pain isn't the right word. People who've had bone pain know it's about the worst kind you can have. They sawed out bone from my hip, they screwed rods to existing vertebrae, and I felt like I was exploding.

I later found out it took them 5 hours to get me to where I could stop sobbing and begging for help. I had no sense of time, only agony. Exploding agony, over and over and over exploding agony. Once I was able to think again and have a sense of time, it was still awful, but I survived on my every 6 minute morphine button...for 3 days. I never slept longer than 12 minutes at a time.

After that I was in serious pain, but not agony. I never knew what agony was before. Childbirth was a piece of cake compared to this, and I birthed a 10 pound 4 ounce baby without a drop of pain medicine. I wish I didn't know what agony was, because now I have a true terror to fear. Anytime my back starts spiraling out of control, I have to discipline my thoughts to not fear the terror of the night again. And so...I didn't cancel the cable today. I'm disappointed, but I wasn't ready, and I'm going to work on not feeling guilty about it. It's money that could be better spent on a thousand things. But God did not once take my pain or my life from me - He left me with both. I may not be truly alone in the night, but I no longer know how to take comfort from God when the terror stalks me. In the meantime I distract myself.

So...the guinea pigs didn't end up in a new home

and I really want to keep them. I love my little piggies. Poppy and her booboo lips, bear and her quirky heehaw squeak, and then there's Gimpy who's all brown except for his backside where it looks like he sat down in a pile of cinammon. the funniest marking I've ever seen. Gimpy is...kinda gimpy. He walks with a leftward lean, and lives in a little hidey hole log. When he's excited (happy or scared) he runs out, around, through and out again, over and over and over, always to the left. He used to try to do laps around the cage with the other baby piggies, but if they were going clockwise you'd hear a thud every other second as he'd run straight into the wall instead of pull right. I think it's made him Gimpier.

We thought he didn't have enough balance to manage being a father. But he did it. Somehow. With his sister and his mother. So I have a cage of perverse guinea pigs who are about to pop out 2 litters of hopefully not any gimpier than their father babies.

Ya gotta laugh whenever you find a reason!

aaaack! Can't we all just get along?

I think there is room for honest disagreement without feathers getting ruffled. And even if I do let my feathers get a little ruffled, which is sometimes hard not to, it's still worth the effort to try to communicate. I think it is, I thought it is. I have to figure out how to feel when others don't. I'm not good at being unresolved. And I don't really let things just roll off my back that easily. I have to figure this out, because some discussions become arguments and aren't worth the effort - not because the PERSON isn't worth the effort, but because the person isn't going to make an effort to hear as well as be heard.

I think that's all from my soap box today. I don't know any more than I did when I started, but maybe I feel about 5% better.

My 3 new projects on needle

Simple Pleasures...

Watching a new NCIS and knitting with some gorgeous yarn I've owned for nearly 2 years and FINALLY decided what to do with it. I'm too lazy to use a pattern, so of course it's becoming a different project, but it'll still be a cowl, just one that buttons so I don't have to muss up my hair. It's a lovely Japanese yarn wool/silk blend. So warm but not too scratchy, made of all the colors that remind me of my beach town.

Also began a Moebus (single edged cowl sort of thing with a twist in it) for my littlest sister and her Midwestern winters, and a pair of socks to thank my friend who's helped me excavate my house with yarn I've thriftily saved for 3 years while I waited for it's project to announce itself (sometimes I do save things the correct way).

Last night hubby was roaming the house. Which means I was roaming the house. walk, thump, walk walk THUMP THUMP, shove, walk thump. uuuuugh. One of the problems stroke survivors face is disruption of normal/healthy sleep cycles. It makes it even harder that I can't always tolerate sleeping in the same bed as him. He has no sense of spacial boundaries which means he ends up shaped like a peanut stretched diagonally across the bed. We have a Queen size and that used to be quite big enough. I'm not sure a King would be big enough now! Sometimes he sleeps normal, sometimes he sleeps like a peanut. I never know how I'm going to sleep. So I get over-tired, and eventually end up being shrieky at people until I've caught up on my rest.

Thank God we get to have home health assistance. I just didn't imagine we could actually have help with housekeeping so we could just focus on being a family. When it's too hard to get a full night's sleep; when it's too hard to play 1,000 questions on what hubby wants to eat, it's also too hard to mop the floor and organize the laundry. For me, it just is!

But now that our house is getting a fresh start, I believe we can keep it going the way it should be. I will have our home health aide keep the public areas clean as well as keep watch over hubby and take him to appointments and errands. This is such a relief to all of us. My poor children, who normally do chores, are having a hard enough time coping with their own feelings and don't have the emotional energy to do much except survive.

How many times can I say "Thank God" without sounding redundant? I hope it never sounds redundant. "Thank God!"

Have you ever felt like you just need to lay down on the floor?

So hubby is having some seizure activity (for him it's never a fall on the floor kind, but trouble walking, talking, thinking), and I'm trying to get him to the sofa in case it's the one time it IS a fall on the floor seizure. He's got his feet firmly planted in the kitchen is would not move until he got out "the coffee grinds and filter can go into the compost." For once I didn't have to squash the urge to SCREAM, or to just lay down on the floor until he got moving again, and he did get to the sofa in time for nothing to happen.

I think that if you are seriously looking at the floor as a place to just lay down all of a sudden, your stress level is waaaay stinkin' too high.

We have an agreement now that if he is having seizure activity, he will now go to the sofa or bed and THEN tell me whatever it was he wanted to tell me...until his multi-tasking comes back and he can walk AND talk at the same time.

It must be so incredibly frustrating to not only not be able to multi-task in the simplest ways, but to have people telling you what you need to be doing, as if you don't know your own mind. Hubby has always had a heart for the disenfranchised, particularly the mentally and physically disabled who don't have their own voices. He's worked many years with this population, and has now found himself IN it, and he is as strenuously resisting the loss of his own autonomy as he always has protected others' autonomy and voices.

Thinking about all that we are facing down-

We have a daunting few weeks ahead. Hubby needs a scary brain biopsy that will be looking for a return of cancer, or a bizarre pathogen, or weird auto-immune disorder, or ANY explanation for his wildly swinging status. I'll get to start interviewing home health workers by end of this next week so they'll be in place when he comes home.

I've been given a grace period to begin my clinical rotation in a few weeks rather than Monday. I so wanted to start right away, but my clinical is only a month long, so going a week, then being absent 2 weeks. It just wouldn't work, nor demonstrate my ability to balance an intensely difficult personal life. My school and site have been super gracious about it. I'm beside myself with thanks. When so much of the time things are never going right, it's so amazing to have something go in our favor.

I have the best friends in the world, especially one who helped all week. I can't believe what we accomplished, and I'm sure she was as tired as i was, but she kept pushing through, which made ME push through. we'd be nowhere near close to finished without her. My bedroom is beautifully almost clean, and we created a private nook for my hubby to hide/rest in.

I need to do some research on stroke recovery. I need to sleep. I need to find some scrubs. I need to be more philosophical next time I post here. I'll work at sleep for the moment.

Sometimes a girl just needs rescuing...

So I have this AMAZING friend who has come over for 3 days straight and spent the bulk of the day doing very hard work getting my garage, and then parts of my house emptied and cleaned up. I'm sitting in awe of the vast expanse of bare floor in here! And my side table! It's so pretty! And CLEAN! I wanted to cry and beg for mercy before the day began, but I knew that if we didn't do this, *I* certainly wouldn't. Thank God for having friends will will lend that much emotional AND physical energy to helping a girl out of a completely inexcusable, but understandable, mess.

Tomorrow I take hubby to see a neurosurgeon. Hopefully they'll admit him overnight and get things taken care of, and when i come home, my guinea pigs will have been sent off to a new home. I'm going to miss my sweet sweet little creatures. But they're not very clean. It's just too hard to keep litter and hay inside the cage. sigh.

We had a meeting with a disability case worker and will be able to have a person come to the house to clean it many hours a week, as well as cook for hubby, take him to appointments, and generally allow him to manage his own life without his wife as his main caregiver. It'll be good for both of us. If somebody will come clean, I'm even happier to do more caregiving of my hubby. I can't believe they'll allow us to use the person for any task except yard work and pet care. Isn't that crazy? I would think they'd just allow direct personal care or cooking or something. But anyway I'm SO HAPPY about this! Just hoping we are able to find someone who will suit our needs and be able to work with us.

Which brings me to the title of my next post..."Have you noticed that sometime you are existing within a different rhythm than others?" (I'm a thinking about the horrible phone convo I had today when everytime I waited for the lady to finish speaking she was already done, so I'd try to speak and then she'd speak again. We talked over one another for about 5 minutes. So frustrating.

Airing my dirty laundry for all the world to see...

...you know that good feeling when you've earned your ease? Settling into your pillows with such a sense of satisfaction that there is a load of very important clothing set to wash in 6 hours (I LOVE MY WASHING MACHINE! I should blog just about how much I love it!) and you've worked all you can for the day. Yes, there is probably a literally 13 gallon trash bag full of dust bunnies and their friends spread in little piles all over the house, and hubby has to sleep on the couch because I just could not get his clothes from the bed to the closet (he is so understanding...and since his stroke he has very odd sleep hours and it works well for both of us to have a break like that). I'm sleeping in a spot on my side of the bed that was freed up by pushing and folding over the clothes and whatnots so I had a space; there is STILL hay that fell out of the guinea pig cage on the entertainment center because I can't get to it as I have laundry baskets full of clean clothes (at least they're clean!) in the way; and I'm generally surrounded by the chaos of my bedroom that had become the place where all things go to die. BUT...my dear sweet friend came over and in just 2 hours made such an enormous dent in the chaos that I now have a way through it and can handle it!

You know how sometimes you just need to borrow some emotional energy from a friend? Another amazing friend with a true gift for creating order in 60 seconds flat spent 2 days with me and my kids helping me sort through an entire garage full of "stuff" that we had not looked at in 2 years. We emptied the garage out onto the lawn and driveway (thank the good Lord for my hedge...it was a fairly secret mess). It was an incredible accomplishment, truly. All that's left outside are plastic storage totes that are intact with matching lids that we'll disinfect tomorrow, then distribute throughout the house so we can start organizing inside. "Toss, Give, Keep." The main emphasis being "get it OUT of the house!"

My "stuff" didn't used to be worthless stuff. I had some of my children's clothes from 8 years ago...all my fave shirts and dresses and a couple tighty whities even that gave me such fond memories of my babies. Lots of GREAT books. My wedding dress. Very sadly, a troupe of rats took up residence in the garage (and since we didn't go out there we didn't know!) and managed to eat through and nest inside most of the boxes. My poor wedding dress :-( I think the cleaners can save it though. But ya, a lot of nastiness. Our garage is now completely empty except for a couple items, and a tarp with items we yet have to deal with (and those are very few). I'm SO PROUD OF US! I'm so proud of ME!

I've been living with back pain since I broke my back in a freak fall when I was 17. By the time I was 28 and had had my 3rd baby (who was over 10 pounds and nearly broke my back again in 9 months time), I had severe degenerative disc disease and needed a spinal fusion. I put it off as long as I could (if you need back surgery, don't put it off...you just end up with nerve damage from your nerves being compressed too long). I didn't heal well. I couldn't go back to work. And the church my husband had pastored for 5 years didn't take kindly to their pastor's wife being on "dope" (pain meds) longer than 10 days, and thought I was completely failing at my job as pastor's wife by no longer being able to sit through sunday school AND worship service, much less play piano for it. They voted to fire us at Christmas, but we didn't get the news til after the 1st as the district superintendent forbade them from telling us as our Christmas gift.

That was the first explosion of my life.

Anyway, more later. For now I have to find a way to turn my brain off and get some rest. I'm so excited to get up and get cleaning tomorrow! And I'm excited to go get my last immunization needed to start my clinical rotation as a phlebotomist Monday (I went to school all summer to become a phlebotomist/lab assistant as my hubby is now disabled from his stroke...let me just say that social security disability is a blessing, but it's a tiny blessing.) I'm excited about the gorgeous red yarn sitting beside me and want to cast on for a pair of socks...no no no, must go to sleep!

If you're still here, I just want to say "God bless you." It's cathartic to say these things to "someone" instead of "dear diary." I always felt like an idiot writing to nobody. But even an anonymous "somebody" is all I need to be able to pour off a bit of all that has me filled to over-flowing and allows me to rest a little easier. So thank you for being "somebody" and listening (I don't even mind if it's just out of morbid curiosity!).

Maybe I will start sharing my story...

I've been told many times that I should write a book.  I think it's pretty common that if you are told you should really write a book, your experiences have been difficult, something you've persevered through. That's certainly true for me.

I don't want this to be a place I come to whine. I might need to do that from time to time, and to VENT. But I do feel the need to say some things out loud from time to time. I don't actually like living so out loud. It opens me up to critique. But it's a way to cope. I welcome your comments. I've always had to work out my thoughts out loud, and since my husband had his stroke a year ago, I've not had a sounding board.

So TAG, You're IT! We'll see what comes of it.