Monday, October 27, 2014

I'm here.

I've been asked a couple of times why I haven't blogged lately.
Today walking Roy by the river, I thought about that.

I don't like to admit it, but my life is wrapped around my headache.  Or my headache is wrapped around me.  I try to ignore it, but it's true.
So to blog, I either have to talk about it, which is nauseating, even to me. 
Or pretend that my life is something that it purely isn't.
And that's not really my style.
You knew that, right?

Every day is arranged according to my head.  I wake up, and for the first minute or so, I am still, trying to assess how bad it is.  Am I going to be able to get up and jump in the shower, and meet my day head on?  Or am I going to slink down to the kitchen, make some coffee, and curl up in the corner of the sofa, and wait for it to settle down?

Sometimes, my headache is quite calm, considering.  Those days, I whip around much like my old self, and get tons of things done.  I forget about it.  That is the most joyful just freaking forget about it for awhile.
Other days, it is medium bad. I function, but it's hard to think.  Imagine putting a brick on your forehead, and then having someone tell you to not think about the brick.
Impossible, friends.  Just impossible.  I try to act "as if" everything is normal, and I proceed pretty much that way.  Only someone who knows me would notice the "look" on my face.  Pained probably.  Grimacing, likely.  I make mistakes.    I forget things.   I tell Lois to "watch me"......tell me if I am off track.
She's getting good at it.

Other days, it just plain sucks, and there is no going about my business as normal.  I do bare minimal, and just aim to get through.  Luckily, those days do not monopolize my life.  But when they come back to back,  it is hard to keep my good thoughts coming.

My neurosurgeon says it's my sinuses.   My ENT says it might be, but more likely is my Chiari issue.
The bottom line is no one knows what is wrong with my head, only that there surely IS something wrong with my head.  Nobody really wants to take responsibility for it now.

I am mostly intent on living my life, one way or the other.  I dream of it being gone, but the reality, hard as it is, is that it is quite present, 24/7, for three years now, but who's counting.

Oh, yeah.  I am.

I am still hopeful.  Like the sun coming up in the morning, seems nothing can prevent me from it.
In the midst of my most awful days, I refuse to give up on the possibility that this insanity will end.

I still spend time with my family and friends, I still knit and weave and walk Roy and bake and cook, and do all the things I love to do. 
I am still grateful, as crazy as that sounds.

There are so many things.
Roy snoring on the couch beside me.  A beautiful, sunny fall day.  Weaving at the loom, hypnotized by the rhythm of my shuttle.
Playing match box cars on the floor with my sweet baby Dale.
Sleep and my ability to sleep, no matter how bad the headache.  I am so thankful for that respite.  Sometimes I think that has saved me throughout all of this.
My family, my friends.  
A glass of wine and a pizza on Friday night with DH.

My studio,  with its golden light streaming through wavy glass, old pine pitch floors tread by so many before me, where I feel more at home than anywhere else.

 I still have my life, and what a gift it is.
Who said it had to be fair? or pain free?  That's just something we have come to expect, quite

Crazy as a Loom is still here, and so am I. 
We're not done yet.

Life goes on, even when it's hard.
I figure it's up to me to make the very best of it.


Sharon said...

Three years is a long time to have your head ache. It's hard to ignore when it's the same place you keep your thoughts and it's hard when the docs don't know what to do. I just had an epidural cortisone injection in my neck, am now pursuing acupuncture and if that doesn't work, medical marijuana :)

Deb said...

You inspire me, Hilary. You always have since I met you through blogging. I won't stop praying and hoping for an answer for you. It was good to hear from you today. Sending a hug and one for Roy, too. Deb

Debra Lloyd said...

Have you considered seeing a doctor that specializes in pain management? When someone is in pain for a very long time, the pain becomes chronic and takes on a life of its own. My doctor told me that pain begins in the brain. When it first starts the path it takes is like an old rocky cow path, full of obstacles. The long the pain goes on, the smoother and faster that path becomes until it is like traveling down an expressway at 100 miles per hour. So the issue may not be where the pain comes from, but that you have a chronic pain issue. This happened to me. We've never completely sorted out the cause of my head pain, but my pain clinic has given me a great deal of relief from the horrible daily pain. Holding you up to the light...

Anonymous said...

You are so very inspiring Hilary. I recently caught myself in an envy cycle. You show me that you just never know what is going on in someone else's life and how silly it is to be envious. Be happy for our lives just the way they are. Also be forever hopeful.

Shuttle, Hook and Needle said...

So sorry that you are still having to deal with so much pain. I like the idea mention above about seeing a pain specialist. If they can't figure out what is wrong then maybe someone can help deal with the pain. Will continue saying healing prayers for you.

As always I love the pictures of your "loom" house. Awesome bench in front of the fire place!

Acorn to Oak said...

So sorry to hear that you're not getting answers with solutions. So frustrating. I know we've emailed about sinus headaches and some possible solutions. I'm not sure if any have helped you...even a little. There is the whole gluten thing too. Most doctors aren't on board yet that gluten even causes problems but lots of studies are showing that it can...including headaches. Maybe a test of a gluten free diet for a couple weeks would be worth a try. Mine aren't nearly as bad as yours but I know I've been willing to try stuff like that and I have. Good luck! I think of you often and will keep you in my prayers.

Hilary said...

If the ENT thinks it's less likely to be sinus-related, then why did the sinus meds and steroids that you were on as a let's try and see approach help so much?

And, Debra has a very good point.

And I hope you're sleeping peacefully by this hour and that tomorrow is a much better one.

Anonymous said...

Hello Hilary
I ditto Debra Lloyd. I was about to reply along her lines when I read her comment. Here's a link to a site that explains it quite well also.
Apologies if you have already investigated this possibility.
With very, very best wishes

thotlady said...

Amen to that.

Deb said...

Hi Hilary - regarding your question...We are going to live in a coach-house just so we can be on the property when we start to build the main house. That will be in 2015. We only had time this year to do the first building which will eventually turn into a garage and extra bedroom above for family to stay if needed. We felt we needed to be on the property during the construction of the main house as my husband will be doing part of it. Presently, we live 40 minutes away. This will be a challenge...there is no doubt.

Karen said...

Yes, indeed you are an inspiration... you are snorting at that, aren't ya. I like what Debra Lloyd suggested.. a pain management specialist. Also... I'm guessing the Benadryl didn't do squa. Your studio looks lovely, Hilary.. I don't know that I've ever noticed the fireplace, love it

gfe--gluten free easily said...

Hi Hilary--I'm new to your blog. I found you through Hartwood Roses, specifically from Connie's purchase of one of your beautiful rag rugs. (Btw, Connie doesn't know me although we live in the same area. I found her blog through seeing her husband's excellent art work at a local show.) I love your studio and your work. Seeing the "before" and "after" photos is simply amazing. Huge kudos to you on that effort and your beautiful work and spirit!

Like Acorn to Oak said, gluten can be a very likely culprit. Individuals who have celiac or non-celiac gluten sensitivity (NCGS) often suffer from frequent or constant headaches, even debilitating ones like yours.

It's also possible that you have other symptoms of gluten issues, but neither they nor the headaches have been tied to gluten yet by your doctors or you. (Although some really might have only headaches as a symptom.) The reason that doctors are not on board with recognizing and testing for celiac/NCGS is primarily twofold 1) they get so little education on it and 2) there is no associated medication; it's treated by the gf diet only.

Allow me to explain the latter. Our doctors get their main daily/weekly education from pharmaceutical reps these days. When there is a drug approved (some celiac drugs are in trials right now--vaccines and drugs to offer some protection to those who get accidental gluten ), all doctors will know about celiac and the definition of those with serious gluten concerns will expand and current testing will be improved because pharmaceutical companies will invest money to make sure this happens. They want new customers. The upswing of that is that many who have suffered without a diagnosis for years will finally get the correct answer that gluten is the source of their symptoms.

I have been gluten free for 11 years and lead a gluten-free support group and write about how to live gluten free easily at my blog ( There are a huge number of folks who have suffered daily, even severe headaches for years before finding out gluten was an issue for them. I myself had headaches all the time. I thought (and was told) they were sinus related or tension related, and I had occasional migraines as well, but they "magically" disappeared when I went gluten free. Now if I accidentally get "glutened," a bad headache is often my first symptom. My son who is also gluten free suffered with horrid headaches before going gluten free. There were many visits to the ER for severe headaches, but no causes were ever found.

While some will do a trial of gluten-free living and see right away that gluten is causing their headaches, sometimes it takes significant time to see improvement and those who think they are eating gluten free are still getting gluten (because of lack of knowledge on everything that contains gluten and getting glutened via cross contact) and, hence, not seeing the improvements they need/want to see. So they might give up too early and rule out gluten on their own when it actually is an issue for them. So I really recommend celiac testing if at all possible before going gluten free.

Continued in next comment (due to space limitation)


gfe--gluten free easily said...

Note that a negative celiac testing result does not mean that one doesn't have gluten issues though. Many have NCGS and react just as dramatically to gluten ingestion as those with celiac. Here are some links below for you and I'm happy to talk to you more about this if you're interested. There are other food causes like aspartame, for example, but gluten has turned out to be the source of headaches for so many. (Some of these are personal stories. I think they are hugely powerful in getting folks to see themselves and pursue testing or an extended gf diet on their own, if testing is not an option or not preferred.)

Last, a friend of mine who is already gluten free, just found the answer to her headaches this summer, all via pursuing information "just one more time" on Google. I had never heard of this condition before, but she's seeing improvements and it turns out her daughter has the same condition.

All the best to you, dear.

Annie said...

Definitely try the gluten-free angle. I lived on Excedrin Migraine daily for at least a decade for headaches, sinus pain and congestion, and breathing problems. I don't have celiac disease, but as soon as I omitted gluten there was a major change. I no longer have to take anything for pain and my sinuses are clear. I feel so much better!!! It's definitely worth a try!

Daryl said...

I think both Debra and Hilary are right .. oh wait we weren't voting … nevertheless i wish i could vote that damn headache off the island

Anonymous said...

dear hillary, I wish I could help you. We have a special doctor and clinic in the town Kiel in germany, I send you the link..
ich schreibe nun deutsch, der Arzt Prof dr. Hartmut Göbel hat weltweit einen hervorragenden Ruf und hat vielen geholfen, die verzweifelten.. vielleicht weiß er was dir hilft.. liebe Grüße wiebke

Anita Johnson said...

Dear Hilary,
Reading this post today almost broke my heart...for you and for me. I have suffered (we are almost sure) from untreated Lyme Disease for two years last month. The first year we looked into everything...from Lupus to MS to auto immune diseases. I never got an answer or treatment that made sense or worked. Finally the Lyme tests were repeated and they came back positive. I have learned that Lyme treated promptly can be cured...untreated Lyme is another story. I am on month 10 of antibiotics. I am better than i was (pretty much house bound) but I pray for continued healing. The antibiotics are rough. I suffer from headaches and muscle twitching and fatigue everyday, just in various degrees. Like you, I push through when I still is my creative outlet. Friends and our church groups support me.Our grandkids are my joy AND the pain continues. I noticed a few have suggested gluten free. I tried it with some positive changes, but they didn't stay and I'm not sure if it was from gluten or just a lyme cycle I was in. So now i keep my gluten to a minimum, just to rule that out. In my heart I don't think it helped me, but again, it didn't hurt.
I don't lioke to blog about my struggles either, but I do update a few times a year...sometimes i feel that I am hiding the truth if I don't, weird as that may sound. And yes, I am tired of talking about AND tired of trying to pretend it doesn't exist.And I have good friends, as you do, that can tell just by looking at me how I am doing. I am so thankful for them...they support me without having to talk about it. I don't dwell on each day, but I am human...I KNOW how long its been since I felt good. I will add you to my prayers as i read your posts and look at your beautiful weavings. God is with me on this unexpected journey, giving me strenth for today and hope for tomorrow. Hugs from Wisconsin.

Cupcake Murphy said...

Sending you love.

Welcome to my world.

Because every thread counts

Because every thread counts