Updates...if I'm brave enough.

I've been pondering for months writing another update for my blog. 
Life is still so much better than the desolate years in and out of the operating room.  Passing my family off into the hands of my husband, friends and nannies is becoming a distant memory...most of the time. 

We are still picking up the pieces...and learning how to make due on the broken ones we are left with.  Old friends are beginning to trust, and new friends continue to make our new life rich. 

I still find myself more private, and more careful of who I share information with.  I frequently weed my facebook, to keep it a safe place to be real.  I don't feel guilty when I block relationships for a time. 

So as I ponder all of this, I am curious...

what would you like to know about me?  What have you been curious to hear as life has continued to play out for me?  What should I consider writing about for an update?

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

Does taking my positive focus posters off my wall mean...

That a child pulled the poster off and cut their head?

That grant thinks my scars are healed enough and he wants his clean white bedroom wall back.

That I have picture frames to out up Still not done with the hanging part of my big project.

Or I'm ready to move on in this stage of my grief and don't want to see signs of my illness (anymore than have to.)

So, which do you think it is?
1,2,3 or 4?


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6words chores

Dead bees remind to bury 2009


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6 words of Mark

Cut hair takes the baby away.



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6 word story physical therapy

Cold pool! Still worth it? Maybe.



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6 word story about Kate

Vomit! Never, please, in the night.


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6 words

How fast she will fit it.

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6 words

Trouble. Too soon he learns it.

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6 words

New glasses. Makes nerds feel hot.

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Monkey urine

Is what I thought this box said. Do you see how?
lol

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If you see me out walking, don't think I'm fine...

...because I'm not.

I'm working to make my muscles strong enough to compensate for the floppy tendons which are causing me pain. Another side effect of low collegen. The doctors are hopeful that this painful work will lead to less painful days ahead. I must have a bit of hope left in me, because I am walking. When I think about it, these days(years) I'm never lonely, because I have pain as my walking buddy.

If you see me walking and wearing nice clothes, don't say, "you look good (and/or) you must be feeling better"

I'm not.

Screw looking good. If I am wearing nice clothes, really the only assumption you should make is that I put on nice clothes that day. One thing that isn't broken is my desire to be pretty. My clothing choices are independent of my health. I really love some of my new clothes. Except for the necessary old lady pants, with the damn elastic waist bands. Old lady or toddler pants, they are equally degrading. So looking good one day is not a sign of no pain. Looking worse, however, is a sign of more pain.

Pain I write this as I walk. In the rain. The rain is getting heavy, but I'm now getting hot under this hood. ...ah! I look up to stretch my neck and my face covered in rain. Feels like tears. Which reminds me of how hard I cried for over a month after my last surgery. Stina, have I told you thanks yet this week? Thanks for borrowing 2 cars, and driving all night from Utah (12 hours) to be by my side. After that time after number 5. I really thought I would never make it through.

But I digress again, please don't ask me how I'm feeling or if I'm fine, because I don't have an answer. The thoughts are big and it take much energy to give the interviewer a question that will satisfy. If I give a positive one, I worry that it gives the idea that missed times of past kindness are okay, because I'm turned out fine. If I give a negative answer, I later feel judged as a complaining whiner.

So can you ask how I am? The best answer I can give is I'll bring it up if I want to talk about it.

I really don't want to appear rude. But it hurts me to be asked and to figure out what you really mean. Hello, or a recap of the week.

So if you see me walking around, don't ask THE question, and it really is meant as a question, "you must be feeling good".

Instead say, "it's good to are you walking".

I know the answer to that one.

THANKS




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Pool therapy part 1, right photo

For my sisters, this is what my coat looks like on a hanger.

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Pool therapy, part2

Next I prep the shower. A plastic shopping bag holds them when damp. With pool twice a week, I just don't have it in me to shower at home. This warm, spotless shower encourages bathing and shaving With its high bench, I can actually touch my calves without ripping my leg off..

I have happy thoughts tied to this room. After the pool I usually feel so alive, with my pain held back from the waters healing powers.

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pool physical therapy, step 1

Take off socks and shoes.
Leave shoes under the bench.
Puts socks up on the shelf, because it hurts too much to get them later.
Feel odd that they are separated, like divorced parents.
tuck previously selected gossip magazine next to socks.

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Floating annual winter team party

Beautiful, glittering. Both the dresses and the dessert.

Formerly known as the office Christmas party, this boat ride of music and dinner for 100 was quite glamorous. The real gold that dusted half the deserts was the most decadent thing I ever ate.

With some extras on the plates as we went ashore, I tucked two lemon sponge cakes and one chocolate mouse tart into my purse. can't wait to see the reaction from the kids.

After 9 am church


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Dropped while we shopped

Nordstrum evening gowns are like eye sex. All I left with was clogs that fit orthodics.

didn't find the gift I came for. can't say what because birthday boy Grant reads this. Did find christmas gifts and decor 75% off at pennys. Did find amy b's bday gift.

And I didn't die of pain

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Love my engrish

Can you see size of this? This hospital shampoo packet fits in my palm. It's made in china I looked on Just like its people, big things for them are small over here.

Case in point, the back of this
34 oz shampoo packet says

34 oz.

This is perfect for getting thru security while still washing all the hair of your family of 12.

Look on my funny tabs to find to funny foreign engrish. It will take you take you to engrish mistakes
found around the world.




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Doctors, doctors, can’t I be well?

I’ve been more quiet that normal about my health.  I’m not sharing details anymore, since it makes me too vulnerable to painful comments.   My quiet does not mean I’m better.

Words I’ve heard this past months that I am or am not the subject of:

Do your Kegels

Intense cluster migraines (new record, 12 days!)

Edema and Tendinitis  in the butt (“gluteus medius musculotedninous unit*”) = Ultrasound machine on the butt. That’s just swell!  *hehe, the best info I found was on a senior health website!  Proof that I really am 60!)

Torn Labrum of the hip?  Not from sports, but from horrible position of my leg/knee in labor.  It should not be held up to your ear.

“I don’t have any suspicion that you have Lupus, since so far your blood works shows none of the many markers for it.”

“Are you doing you kegels?”

“Of the 7 forms of Celiacs Disease, only one is gut related”

Miyofascia massage (and or deep tissue) should be call pinching skin torture

“I want you to see me twice a week.”

“….with the needle giving a injection directly into the hip joint (for 90% MRI accuracy in seeing tears)”     ***Happy New Years Eve!***

“Mild fraying (type 1 tear) of the anterior labrum”

“Time doesn’t heal all wounds.  Time allows for processes”   -Jon Burner

Functional Thoracic outlet syndrome (TOS) (yes, it could have been worse, despite not being able to write more than three handwritten pages)

(had to share this super sexy photo that is one way to diagnose TOS. 

“I want you [to ALSO] see me twice a week.”

“…Painless Paralysis leading to exaggerated guarding, ask (yet another)doctor about Botox injections”

Clinical Hostility

“Make sure you do your kegels, and teach your teenage daughters to do it for their whole lives too.”

We’ll do lab work and follow up in a few weeks.

Looking up the real, current meanings of words is much more educational than leaning on your presumptions:  http://en.wikipedia.org/wiki/Psychosis; http://en.wikipedia.org/wiki/Hypomanic_episode;  http://en.wikipedia.org/wiki/Gossip; http://en.wikipedia.org/wiki/Hostility; http://en.wikipedia.org/wiki/Hypocondriac

I’m have signs of  addiction  to Lyrica (Pregabalin) more than any of my other pain killers.  Since that isn’t a narcotic, no one cares.  Other drugs on my list freak people out.  It sucks that there is only stigma related to narcotics.  

Looking back towards previous centuries: “Hyster wanders outside of the uterus = hysteria”  Something to ponder on.  This just proves how a woman in pain is to be counted: Worthless and “it’s all in her head”.  Luckily, I don’t have a single doctor who believes that.   Sadly, I’m one of few women who have supportive doctors.

 

For those of you still reading, you’re cool.

For those of you who clicked on a link or two,  you’re even cooler.

For those of you who realized that there is a difference between really crappy health and being afraid you might get crappy health, you get a gold star.

Now if you’ll excuse, I’ve got to do some kegels while I eat lunch.

 

 

(Dear Wikipedia,

I love you.  When I try to share the huge amount of info I have with friends, you are a great resource for the right info, condensed, without trying to sell me a supplement.  Thanks for being cool.  

Love, Rachel)

Practice for first school day of 2010

6:45am. Too early when all have woken at 8.30 all week. This is day three of alarm clocks, picking loud dancing music and waking the kids. Hmmm, hot apple juve might get is all out of our holiday schedule beds. Canly do got chocolate since alex threw up last night. A symptom of Fifths disease that emily started? Her rash makes her look like alex won after a whole body slap down.
Of course, having only slept two hours myself is going to make the day interesting. slap happy jokes make even the pain and good book, then racing thoughts seem funny.

Now its exactly 7 am. Time to get a cd started before I'm too late!

What are you going to do to survive the first school morning of 2010?

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