Loose ends

For several months now I've wanted to write the last chapter of my time of illness. For weeks now I've been thinking about writing a closing post. To finish off my story for anyone who might stumble upon this blog, or those who kindly read it. (Thank you)

Then the holidays kept me busy. Then I debated how open I wanted to be with an unknown reader. I don't share so much of my reality with many people anymore. Today there is only a small handful I would share the same kind stuff that used to I shared with just anyone before I got sick. Even less now that it looks like I'm as healed as I'm going to get. This all gave such good reasons to not write an ending.


Writing a closing post was also put off when I realized, "I should do it a year after I made my last post" That day is now, yet I still am not sure what to write. I want write honestly and tie up lose ends. But I don't like feeling venerable anymore, so I want to write protectively. I can't figure out how to do both. But I like endings to my stories. Especially when they are more pleasant than I expected. And I appreciate those who read and commented on my blog during a time that I really really needed the special experience a blog can give.

For now I am...

• Alive.
• A full time mom (for the past 7 months).
• Able to walk long distances (record 3.5 miles) and get pain relief from it.
• A Graduate from PT, but currently I'm back working on my master's degree in as I continue to figure out how to take care of this body.
• Getting great low back/leg pain relief from a "SpinoMed" brace. (but it's only the latest in countless devices that helped...for a time)
• Able to cook a meal and still eat with my family without increasing my general level of pain.
• Doing projects around the house (right now a big one for Grant's birthday)
• Working on my well practiced (but bad) habit of swearing (I lose points everyday, but Grant might have me beat)
• Taking my kids to doc appointments, including therapy.
• Doing homework with the 3 kids who have it.
• Singing songs, giving kisses and talking to each child at night.
• Driving. Especially driving to Seattle without spending all my health reserves.
• Standing in line, sitting in chairs.
• looking a bedroom dresser free of medical forms, notes or info sheets. (shreading/ packing up those last signs of my illness has encouraged me to finish this blog too)
• Go to school functions, even volunteer.
• Go out to eat.
• Camp and other much more fun vacations.
• Go grocery shopping, household shopping, and even shop at two stores in one day.
• And so more that i don't even think about because it's so natural to me now.

All of those things I couldn't do without dramatic increases in my pain. Many of those things I just didn't do. Or if I did them at all, I couldn't do it without stopping to have a break to lay flat. Without headaches. Without feeling overwhelmed(which led to the yelling and before mentioned swearing). Without hurting bad enough that I whimper "I hurt" without even thinking the words. Without "paying for it." With out hating.

I couldn't have done it without:

• My husband, who didn't wavier in kindness, parenting, house duties, support and love. Even when anger and pain had burnt me to a crisp. Without him, there would be little reason for the work it's taken to get as well as I have been able. And because of him I am more able to do all the work it takes to STAY as well as I have reached so far.
• My primary care doc (she is also my OB) who didn't ever give up, cried with me, and celebrated with me.
• A pain management doc (Cassius) who specializes in Marcaine injections in the spine and muscles. He managed to properly get my thyroid disorder recognized and treated. His encouragement pushed me thru the some of worst days of my illness when I gave up all narcotic pain medicine 10 months ago. My pain is not my primary thought and motivator because of his skill.
• A good endocrinologist. Wish I found him after Alex was born, I would have remembered more of my kid's infancies instead of drowning in a dark hole after each birth...if my thyroid had been properly diagnosed and treated.
• Therapists and med doctors who specialized in chronic pain
• My best shrink, a great LDS guy who has known me for 9 years, who I trusted enough to hang on. And he gave me confidence in my skill so far and future ability to hang on.
• 10 months of a general physical therapist (Joan believed in me) and a little less time with a pelvic floor physical therapist (Myndee's work and advice set the rest of my healing in forward motion).
• A family therapist for the kids. She helped us understand how to respond to each child's different symptoms of trauma from this time. I hope none of your kids ever cry at night because they were worried that this time, this surgery their mom might die. Or become so withdrawn that there is no way to comfort them.

I wish I felt this was a safe enough space to share more without being judged. Having the stitches and wounds heal was horrible on the body. I thought I was done when the skin healed. Then a new tidal wave hit, emotionally healing from this drawn out medical roller coaster. I don't know if healing spiritually was an after shock of that wave, or it's own separate space that needed healing.

Regardless, I thought I was done. No one told me that I'd have to heal a third time, this time healing my family. Each of these steps, I didn't think I could do it. I didn't think I could face the work, do the actions or even ever feel like I accomplished anything. Each was painful in such a different way, that I can't even put them in order of "what sucked the most about this 3.5 year hell". That's 3-4 distinct stages of healing, (which each give you a huge sticker on your head that says, "judge me")(But those who wear non-polarizing glasses can see it really says, "love me")


I'm sure I've forgotten someone on this path. I've left out all non-medical people intentionally as part of my desire to not be venerable. Selfish yes, but I'm not ready. There were those people who have lifted me, answered the door and phone at important times, or had been so inspired in their actions that I felt loved when my emotions were blazing hot...those people were amazing. It was because of those kind of people like that I was able to even desire to find my faith in God and also in my church I hope they know who they are.

I'm not sure where Julie fits in here, so she gets her own place. A nanny who we were so blessed to find, blessed that she put up with us for 18 months or so, and blessed that the situation was such that we were able to ease me back into motherhood slowly. Boy, were those tough weeks as I was given back the job title of "full time mom". I wasn't sure we would make it thru.

Once again, I find that my fingers were able to write a post that I didn't think possible. At this late hour, I think I've included enough to tie up loose ends and keep safe those things tender to me. Thank you for following my blog, however much I knew you. Thank you for prayers and thoughts that were sent my way. Thank you for a mostly great experience I had as I gained the title, "blogger." Thank you.

So with that I finish this blog, a record of my past, of when I was ill for so long. I hope we never come close to experiencing this time again.

And if there is another stage of healing, I quit.

The End

I'll answer you in 2011...

How are you doing?

Why are you lying down?

How are you feeling?

What are you up to?

Boy, I hear it all the time. From people who live in my house. To friends and neighbors. From people at church. And old friends from high school and college that I'm getting back in touch with on facebook.
How do I answer? Well, the last 18 months sucked. And were complicated by several different things

trouble getting pregnant
trouble staying pregnant
trouble keeping food down
trouble with gallbladder (+pain)
trouble with thombosed hemorrhoids (++pain) (TIM, I know, but the surgery to remove.... *shudder*
trouble with varicose veins (+pain)
trouble losing weight (they hate that when you are pregnant)
trouble starting labor (induced a week late)
trouble with the epidural (+++++pain)
trouble with back(+pain)
trouble with hormones
trouble with thyroid
trouble with gallbladder surgery(+pain)
trouble with fissure surgery(+++pain)
trouble with healing (++++pain)
trouble with back(++++pain)
trouble with back injections(++++pain)
trouble with back tests with injections (++++++++++++pain)
trouble with back surgery(+++pain)
trouble with continued foot pain (++++pain)
trouble with new, oversensitive foot (++++++++pain)
trouble with pelvic floor pain (++++++pain)
trouble with hormones, again
trouble with tooth (+pain)
trouble with root canal (++++++pain)
trouble with temporary crown (++++++pain)
trouble with test to diagnose the foot pain (+++++++++pain)

trouble trying to be a mom and wife and friend from bed.
trouble to keep my mind, my faith, my soul intact.


So when I pause when you ask, "how are you?"
It's not because I don't like the question. . It's because I just don't know how to answer. I'm glad to be asked, glad to be remembered. But, I'm not going to lie and say, " good". And I'm not going to fake optimism and say, "doing better." Mom, don't worry. I'm not always so negative. When I have a good day, I'm very happy and answer "I'm having a good day, and I'm happy for it".

I kind of like something that came to me when I was "facebook-ing" a high school friend....

How I'm feeling is a hard question to answer. It's complicated. I'm doing better than my worst, but haven't improved in a few months, and I'm far away from my best. And I'm trying to find a doctor or doctors who can tell me why and what I can do to get back to life. even if they just say, sorry, go to a pain management class. someday I'll post what all has happened, but it's to depressing to recount. Short answer: Baby #4 broke me.

Keep asking. Keep letting me know you are reading and praying for us. Keep being patient as I try to figure out how to answer the question. At least until 2011. That's going to be my great year. The year I'm healthy for 12 whole months. Or atleast the year my health doesn't stop me from living.

No, I won't. I won't open my eyes. You can't make me....

Okay.  I haven't really posted in a week.  It just seems like that because of the cool "publish later" function on the blog. That way I don't overwhelm my few readers when I have lots to say. 

And now, I have nothing to say.   Because if I say it, I have to think it.  And if I think it, I will have to realize it.   I don't want to realize that my life sucks right now.  

RULES:  Don't tell me its normal to feel this way.  This doesn't make me feel better.  Don't tell me, "At least you..... "

Yes, lovely that I have kids.  And a husband.  And a job.  And health insurance.  Praise God it's not worse.  

But can't I be like you?  Have a house and a kid and better health?  I can't I have hope of getting better or better diagnosis to manage the stuff I do have?   Can't I even have a diagnosis (or three) so I can know what helps and what hurts?   And find a support group?  (or three).  For me, for Grant.  They say kids are resilient.  But chronic health can kill a marriage.   If it doesn't kill the spouse first. 

Or can't I be like Deb W?   Can't I have the inner strength, the understanding, the peace from God that I'm okay with my life now?   That having the pain but staying alive with my kids is worth it?  And since I don't have that, can't I have Deb here to talk to and remind me and teach me? I miss her.  A lot. 

I need a Deb.   Or a Sarah or two will do.  Or a testimony. 

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Hostile takeover has been explained...I hope

I realize that by posting this, I will tick of some family readers who hate when I talk about my health. Don't worry, read to the end for a happy finish (non medical)

But there are others out there who are also stuck in a cycle of illness. I've learned from their writings. Maybe I can help another...

So I'm tired. REALLY TIRED. So tired that when I try to wake up, I feel like I'm underwater. It takes me a while to get my voice and limbs working.

My brain has been hijacked. Thoughts I have now that seem normal and rational, I can safely assume I will think better of. Like my plans to suffer thru just one more year of pain. I know, my husband knows, my doctors are all on board and up to date. This is Emily's facial representation of my brain

(Really it's her new favorite silly face to make. She's really practiced it well in the mirror, great eye crossing! )

I was relieved to find out Monday that my progesterone, estrogen, vitamin D and Iron are very low again. YES! I know I'm crazy, but now I have a reason for the recent hostile takeover!

So I'm back on progesterone. 100mg, at bedtime, and it's freshly compounded (not synthetic or old from a normal pharmacy). I thought I was free of it, that I was healthy enough to trust my body to make it's own hormones. Guess not. Not yet, anyway.

And now I wait. As my shrink says, just let momentum happen right now. The days will go by, and I will slowly, slowly get my brain back. My family waits. Especially my husband, who is the only one I share all my thoughts with. Of course, he's the only one in bed with me at 1am to listen to those thoughts. Nighttime is the worst. The scriptures about Christ as the light of the world are more meaningful to me now. Now, as the northwest has the long, dark days and nights. Now as my brain tries to function on bad blood and bad food (i know, i know, I'm going to try to eat more than chocolate all day and a normal dinner).

I try to pass the time well...like posting, reading, doing paperwork to get insurance and FSA to pay us for doctor stuff. Oh, and shopping. I finally went to the local thrift store and got some jeans. My size 12-14 jeans can slip off. I was thrilled to fit comfortably into a size 10. I haven't been a size 10 since....I was in my first trimester with Alex. The size 6-8 I was when I got married/graduated will never return. But I can be happy with a 10. As long as it lasts. 144. Wow. I haven't seen that number on the scale this decade. That's only 15 pounds heavier that the day I got married. That's less than I wrote on my drivers license, which I lied on.

It would be more glorious if so much pain wasn't involved in getting there. Diet vs pain???? Hmmmm, pain has pain killers. Diet and hunger, been there, done that....I think I'll take the pain. And the skinny.

Ignore the tired face...trying on the new top with blue skirt....

This photo is a top that I ended up returning. LOVED IT, but it fit perfectly, and it had never been washed (100% cotton) and I don't want to be upset when I gain some weight and can't fit it. Or worse, wear it when I gain weight and I really shouldn't wear it.

Grant was putting the kids to bed, so I took this one....size 10 jeans! with top I returned...so said. I loved the pattern!

NON MEDICAL ENDING

PS....if anyone can get Grandma Spencer to read this...Here is where I installed the artwork I was so privileged to acquire at her estate sale. Right over my piano. The same piano that I FINALLY cleaned off last week. It was covered with a decade of home videos (now mostly converted to DVD) and 5 years of tax documents from our FINALLY finished Audit. Yep, nothing like an IRS audit, delivered two weeks before your fourth pregnancy from HELL was to end. Oh wait, since it was such a horrible pregnancy, nothing like at IRS audit to finish off 40 horrible weeks with a bang. Baby Mark (Who was born a week late on top of it) was crawling before we got the paperwork error (their part) fixed. And now with Mark almost walking, we've finally put away the paperwork. Ahh.....pretty photo, clean house, happy kids....

Do you remember what to notice in the above photo?

Brass Artwork

Clean piano

LACK of tax papers and VCR tapes

Organized music

Finished Christmas tree

Fruit loop tree garland craft project that Grant planned, bought and executed alone

Gate that we only bought for baby 4 to protect tree

Katelyn with a Clementine orange sticker on her head from breakfast. So Bollywood

Oh, and also Grandma Spencer's couch that is slightly younger than me. And still in great shape. But that's another post for another day...and I've already rambled long enough on this one.....besides, IT'S TANNING DAY!

I can see clearly now, the rain is gone....

Ahh, Sun! So bright, So warm...warmer...hot...my face is really hot! Um, I think my lips are burning.

Don't I wish this was my tale about my mini-vaycay (mini-vacation to those of you who don't read seriouslysoblessed.blogspot.com . Nope. No sunny beaches. No sun even this weekend. That's part of life in the winter in the Northwest.

Another part of winter in the Northwest in low levels of Vitamin D. It's a chronic problem that western medicine is finally doing enough papers to get people's attention. When Alex was born, 9 years ago, in the winter, they asked if he nursed or breastfed. When Mark, my February Baby, had his last wellchild visit, they asked what we fed him and if we had started supplementing him yet. Yep, adding drops of Vitamin D to his bottle. It's so common, that even our tiny supermarket pharmacy has six different kinds, three different brands of vitamin D.

My personal doctor is ahead of the curve. She's been watching my vitamin D since my first pregnancy. supplements are great, when you actually absorb them. I'm not. So lucky me (this time not sarcastic, really lucky me) I get to tan!

I have doctors orders to tan twice a week to bring my levels up. It's such a hardship to leave the screaming children and the rain (yes, Sarah, I know...if I only brought them out of the rain, they wouldn't scream.) But I will suffer, nay I will sacrifice for the good of my health. (there is the sarcasm, or is it the martyrdom?)

For those of you who haven't ever tanned (not that I'm judging those who actually want their skin darker)...you know how awesome you feel after it. I use a super high bed and get 22 blissful moments of sun. After I feel like I had a light massage and/or had laid on a relaxing beach on a perfect day and/or have been served a great cocktail while I lounged by the pool. Ahhh, bliss.

If any of you have moved from anywhere sunny to Seattle, especially in your first winter, GO TAN!!!! It will be just like normal life (sun damage wise) as a week in Denver. And the tanning high lasts for days. So now, as it is dark and rainy, I don't mind. My lips are burned,my skin is dry, and my mood is bright. :) Of course, the lips would be fine if I would remember any lip balm, and my skin breaks out at the tanning lotions that keep you from getting dry...my that's my bad. My mood makes up for it all.

Sorry, no photos....the photo button doesn't work right now, and I've got dinner and FHE to attend tonight. No more bedblogging for me! Now I'll go and have another Pina colada.....

What good could come of this

It's past midnight as I write this.

Crying.

Laying in bed, next to a very tired husband.

Pain.

Will it ever end ?

What am I doing wrong?

Or am I doing the right things, but I'm graced with pain for this life.

I wish I could have in interview with God tonight. I would ask for strength to get thru this. I would ask if I was doing the right or wrong things....especially pain killers. Yes, I have no name for my poor health. But I have no reason to have such bad pain. My intuition tells me that if I did the right tests or saw the right specialists I would be diagnosed with an auto-immune disease...RA, MS, Fibromyalgia or Lupus. I already have Hashimotos autoimmune thyroid and an autoimmune ovarian condition that causes me to stop producing hormones at times. Once you have one autoimmune condition, your chances of developing another one are very high.

But right now, my bad health can be counted on to flair up after child birth. My extended family will probably cheer when they read that my docs say no more babies. One says she'll quit if I get pregnant again. Another one says I'll never recover again and need replacement hormones THE REST of my life.

But none of that matters right now, as I lay in bed tonight, crying and so uncertain for the future. Grant wants me to stop and think of what good this time will bring. So I'm using a tiny PDA to tap out my feelings.

WHAT GOOD COULD COME OF THIS
1. We're helping the economy my paying for extra in home workers
2.I'm keeping my husband from being a workaholic.
3. We are closer together to a unified view of our oldests son's issues and more unified on the solution to them.
4. My prioritization skills are much better than they used to be.
5. Because of the above our marriage is stronger since i no longer drive Grant crazy with my important tasks that he sees as fluff no one will notice.
6. We've stopped waiting for tomorrow or a better time to have dinner guests and play dates. We've had more people over since I've been sick that in all the healthy years past. Friends are another great narcotic to me!
7. I'm staying more current with computer trends...even though its blogspot and not windows live (much to Grant's dismay)
8. The content of my next meal finally isn't the center of my world.
9. I'm aware of different things about my kids than if i had been the typical housewife.
10. I can handle more pain than i imagined and still be thrilled by e baby's small emotions and a big kids art project or finished book or playground squabble.
11. I can still go fun places with my kids and experience new things together. It's just thru the Internet and youtube videos instead of zoo trips and sack lunches
12. 7 and 9 year olds can do laundry. They can sort it by reading tags and they can move it from was to dryer to basket to drawers.
13. I'm becoming more like my personal heroes. Clair Wood, Deb Whitmore, Ann e K, Holly Overbaugh, Tammy Risenmay to name a few. I really wish I could be like them without pain of this intensity and duration. But that is what built them.

There are so many fears i have that won't do good to dwell on. But they are dark and huge and so real. They would seem so powerful that death would be a welcomed exchange. I fear so much doing the wrong and making this worse than it needs to be. Even now I write for the world instead of praying for peace. I do talk with God....but its more in a begging form of surrender than a reverent prayer.

Ahh...peace...the meds have hit my blood and I'm getting relief and sleep is near. I don't care how I got here anymore. I'll let the doctors worry instead. At least for tonight.