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

In the church news

A choir event I was in made it into the church news.

I was part of a stake choir that joined with 6 other church choirs at the local catholic church.  It was an incredible event, one I hope to see every year. 

Since the event happened on Conference Sunday, we were able to accept the invitation.  The only thing sweeter than the spirit was the homemade baklava at the following cookie reception. 

So great! 

You can’t see me in the group photo.  I’m behind the choir director. 

http://www.ldschurchnews.com/articles/58055/Unity-of-faith-Six-churches-combine-for-choir-and-program.html

It was such a great even that I’m joining the Stake Christmas Choir.  It will be painful after 1 hour choir, 3 hours of church before the 1 1/2 hour choir rehearsal every Sunday.  But I always feel happy singing in the choir.   A happy event, especially on Sunday, is so rare for me.  I’m willing to put myself in physical pain to get it.

Oh, and  you know how I mention pain so much?  You’re probably sick of hearing me say it.  I say it because I’m always feeling pain.  I’ve been told, “Oh, I forget you’re in pain.”   Gee, thanks.  Note to kind friends, don’t tell someone you forgot you were in pain if you don’t want to be thought of as rude.   

Oh, there I go again, I my normal, worse than usual, Sunday grumps.   

But do read the article.  You might surprise yourself by enjoying it.

Oct 2009 Update: Why I am NOT strong or an example of faith

Dear Readers: 

This is part 2 of 3 of a letter.  In the interest of time, I have copied from a letter I wrote to my new friend, Nikola.  She had written me a praising, uplifting letter.  I’ve used bold font to show clips from her letter.  Then I respond to them. 

So if you want to find the answer to these, read on! 

Do you ever say -"WHY ME..."  "Why doesn't this get better?"    You deserve to have days when you are down and feeling sorry for yourself -

You are such a good person and trying to keep your faith and take care of yourself and your family all while you are in PAIN.  I ADMIRE YOU SO MUCH.   (And) seeing your example of staying strong through difficult times is going to be very good for them.

You have already shown Satan that you will never give in or lose your faith.

Seeing your example of staying strong through difficult times is going to be very good for them

What does your husband do?  Is he able to work from home sometimes so he can be there to help you with the children?  I'm sure this is very hard on him too

Thank, Nikola, for thinking so highly of me.  I have my responses below.  So hold on and get comfortable!

.

Do you ever say -"WHY ME..."  "Why doesn't this get better?"    You deserve to have days when you are down and feeling sorry for yourself -

I've spent much time feeling sorry for myself.  Hating my situation.  Hating God, since I felt very impressed when it was time to have each child.   How could God want me to have kids, knowing that this would be the result?  I couldn't even hold my last baby for half of the first 18 months of his life. 

I feel frustrated at God that he let this happen. I feel that more than “why me.” We felt very inspired to have a 4^th child. We even questioned God several times. We had family members openly against our choice. I even had several early miscarriages, and took something like 6 months to even get pregnant. I’ve been reading a lot about chronic pain. I’ve learned that anger is a separate symptom of pain. I am sure filled with anger.  I can think of many times that I've been overly frustrated at Grant and/or the kids, and yelled more than normal.  Then I realize that I'm in pain that it was quietly building.  If I just take some time to rest or take meds or both, I feel less angry.   Because of that, I don't think I'm one to be admired.  I've hated this, I've been kicking and screaming the whole time, and I've felt very left out of life.  I still feel that our pleas for help were ignored.  But I hope that I will see it differently when this is all past.  If it ever passes. No, when the worse has passed, and I get used to what's left.

You are such a good person and trying to keep your faith and take care of yourself and your family all while you are in PAIN.  I ADMIRE YOU SO MUCH.   (And) seeing your example of staying strong through difficult times is going to be very good for them.

Don't feel like a good, faithful, strong person.  I'm a broken person. I know how much I've turned to swearing to express the pain and anger.  Even though I'm trying to keep it in my head more, it's still there.  I'm currently averaging 20 swears toward my family during the weekend, and 15 during the week.    And those numbers ARE me doing better.  So how can that be admirable?    I don't feel like I'm strong.  I've felt more pain that most of all my doctor's (and dentists) patients.  I've cried out in that pain.  I've curled up in a ball and given up so many times.  I've woken up, sad that I woke up and had to face another day in pain.  Update…since I wrote this I’ve been actively and painfully stopping myself from swearing. My family has realized how hard it is for me and is celebrating my efforts. You’d think I was potty training. Really, I guess its potty mouth training.

How is that an example of a strong woman?  How is that admirable?   I've heard that said by so many women, how they admire me for going thru this, that they think I'm so much stronger than them.   I guess I must look nicer than I feel, because I don't see it. Or maybe because I can make a few muscles turn my lips into a smile...maybe it’s that smile that people think that I'm strong and  worth admiring.  When instead, maybe I'm tired of crying. 

And keeping the faith, and all that.  Oh, that's not me at all.  As I said before, I've hated God.  I don't see how this is going to make me a better mother.  I've felt....removed?  left out?  invisible?...of church, of Relief Society.   At the beginning, I returned to church quickly after surgeries.  I wanted to be there.  Because I could lie down at church just as well as at home.  I was going to be in pain either way, and I'd rather get to talk to a few new faces than be at home in bed.  It's funny, because AFTER I got better, being just in chronic pain instead of acute pain, I stopped wanting to go to church. I've only kept going because of my husband's stubborn insistence.  It was easier to go than have all the questions and pressure.  

I've watched friendship disappear.  Groups of friends going on without me in gatherings, carpools, visiting.   I've fought with leaders.  I've felt ignored and forgotten.   2 Wise women have stood by me, encouraging me to take the higher road.  Encouraging me to read the scriptures, to pray, to hang on to whatever faith I can.  That faith comes in spurts.  Watching general conference has been a big boast.  I wouldn't have said those two months ago.

I AM NOT STRONG. Grant is strong. Grant has carried our family thru this. Grant has made me strong. Grant is amazing. I get my strength thru him. I keep my faith because of him. Even this paragraph isn’t enough to thank him, or tell about him.  Just because I’m alive doesn't mean that I’m strong.  I feel broken inside.  Sadly, I feel like a victim to my bad health and the reactions of others.

You have already shown Satan that you will never give in or lose your faith.

I have lost my faith many times.  I have cried thru church.  I have walked the hallways to avoid going into Relief Society.  I have mentally checked out of classes, because I was overwhelmed.  I would replay movies or think thru a book plot to keep myself in my chair.  I would think about what food I would treat myself with if I stayed in the room.  Often that meant running into the house for an ice cream cone the way most people would run for the bathroom. 

I must say that I despise the story of the rolling rock that is often used in lessons.  So far, I have found no scriptures that back it up.  You know the story, “I am like a rock, rolling down the hill.  When I rub against others, I lose a corner here or there.  In the end, I am a smooth, polished rock” 

If I’m a rock, I’m in pretty bad shape.  I don’t feel like I’ve lost any corners.  I feel like this trial has left cracks in my rock.   I can’t be alone.  But stories about people who didn’t grow and learn from their trials are not in the Ensign.   So some people’s faith grows the best during trials.  I haven’t experienced that. 

Seeing your example of staying strong through difficult times is going to be very good for them

You can see from the above faith and anger stuff, that I don't think I've been strong.  Maybe it's just because I'm in the middle of this.  I hope I have set other examples for them. My kids are growing so fast, so they have kept me going better than I would have been without them.  I've tried to hurry anything that will get me functioning enough to be part of their lives before they grow up.  This includes using strong meds (2 anti-seizure meds good for nerve pain, opioids, MS muscle spasm drugs).  These meds could affect me badly later in life.  This biggest risk could be addiction to the opiates.  I'm willing to risk that, and so are my doctors.  Raising my babies is the best part of my life.  And I'll do anything to have more of this time. 

What does your husband do?  Is he able to work from home sometimes so he can be there to help you with the children?  I'm sure this is very hard on him too

Grant is a computer programmer. Because of his job, we’ve had complete insurance coverage. I’ve already hit 100,000 for the last 2 years. His work allows him to from home. Finding working from home has mentally not been possible.

We've had a nanny for over a year, so my husband can work, and I could heal.  And have a surgery.  And heal.  And repeat.  Honestly, we tried having him work from home.  His work was supportive.  It turned out horrible.  He really needed some time removed from the situation to stay sane.  Work was the only place that problems could be fixed.  Just from this being asked this question, you are aware that chronic illness is a family illness.  This has been very hard on Grant.  He can't take a pill.  He doesn't get to nap.  If I think about it, what has helped him most is the nanny having a hot dinner on the table when he gets home from work.  

Instead of working from home, we've had a string of nannies for months, before a friend introduced us to "Nanny Julie".  For the last year, she's kept this family running.  She's been the strong one, the helpful one.  We've been so blessed to have the resources to have a nanny during the work day.  Our penny pinching early days really helped us out.    My husband jokes that paying for a nanny hasn't been that bad.  When I was bedridden for so long, I couldn't shop.  Our budget had much unspent money in food, clothes, kids stuff, household stuff, eating out.  All because HE had to do the shopping and HE only shops from the list.   

When I ask him how he coped with all the extra duties, and nursing me, and my grumpy moon, he said this:  There are needs and there are wants.  You don’t have a choice when it comes to needs.  No matter how tired you are, load the dishwasher.  Start the laundry.   Wants are another matter.  I’ve been very negative towards him about wants.  I felt bad for that, and said sorry.  He says he doesn’t even think about it, if he can’t change it.  So he wasn’t bothered by it.   What a great man!

Phew, if you made it this far, you’re either my shrink or a stalker.  As Kevin Bacon once said, as long as you have stalkers,  you know you’re still famous.  Stalk on, my friends, stalk on!

want to see the rest of the letter?  Part 1, Part 3,