Eyes Wide Shut

I’m so tired.  I’ve experienced fatigue before, but nothing like this.  I can’t stay awake, except at night, when I can’t sleep.  I’m restless, yet I can’t get it together.  I started exercising more this past month, but this past week I haven’t been able to do more than what is absolutely necessary.  A little while ago I put some dishes in the dishwasher and now I’m ready to take a nap.  I am having a very hard time keeping my eyes open.  Lifting my limbs is a challenge.  This in conjunction with extreme brain fog, yes writing this post is a challenge, it’s also why I haven’t been able to follow through on promises made.  I really hate that.

What changed?  I honestly don’t know of anything that has changed so much in the past week that would cause this.  I don’t think I’m sick.  I’m not running fever or anything like that.  My headaches haven’t been worse, they aren’t better, but they aren’t worse.  I haven’t increased my medication.  I am taking CBD oil during the day, but I’ve been doing that for over a month now, so that’s not new.  I’ve actually been taking less this week because I keep forgetting.  As it has been pointed out to me countless times by numerous people, I have been under a huge amount of stress, but honestly, the stress hasn’t really intensified recently, it’s been pretty steady for months now.  I’m dealing with it pretty darn well, if I do say so myself.  The only thing that has my mind racing is our house hunting, it’s taking longer than we expected, and it’s just getting to me a bit.  I’ve decided to step back from the search for a few days at least, a bit of breathing room, get refocused and start again next week.

I’ve been using marijuana to help me sleep for a long time.  (full disclosure, I was using it long before we moved to a legal state)  for some reason it’s not working like it used to.  I can’t sleep, yet I can’t stay awake, what’s up with that?  When I try to go to sleep at night I just toss and turn, often I just give up for a while and get up.  It’s hard not to snack in the middle of the night when you’re up all night.  OK, I’m exagerating a little, I am sleeping …some…

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My sleep last night recorded on my Fitbit.

Okay, my brain is not working.  I’m about to fall asleep…probably not really, but I feel like it.  It is storming like crazy right now.  Monsoon season is almost over, as much as I’m tired of the storms every day, I’m going to really miss them when we go for months with no rain.  Plus, they are really cool.

Some reasons I might not be sleeping…hmmm….pain.  My wrist is getting better, I’m not having those horrible sharp pains and I have much more range of motion.  I can pick up dishes without extreme pain! That’s awesome!  But, now it hurts all the time.  The pain is not as intense, but it’s always there.  I bought some CBD salve yesterday and I’m rubbing it all round my wrist and hand, not the actual surgical site yet, I get my stitches out on Friday. after that I’ll rub it all over.  Cross fingers it helps ease the pain a bit.  I feel silly complaining, it’s not that bad, it’s just constant.  (sometimes I do still have some sharp pains, I was just reminded of that a few moments ago when I tried to help with dinner)

Thank you all for listening to me rant.  I do accept that this is the way it is right now, but that doesn’t mean I shouldn’t try to figure out what is going on and take care of myself the best I can.

Any suggestions?

 

 

 

 

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Ten Things Thankful 07.20.2018

I was over at my friend Faith’s blog, Little Lord Oscar Dandelion, if you haven’t been over there, check her out, she has some amazing short stores and she’s just really cool too! She shared a post from Ten Things of Thankful and posted her own list of things to be thankful for, you can check her list out here. I think this is a wonderful idea, I have not been paying enough attention to the things in my life that I’m very grateful for, I think this will help me bring that front and center. I think it’d be super cook if you joined us on the challenge.

Ten Things of Thankful (I do want to point out that the rules say “Although the number ten is in the title, that is more of a suggestion than a hard and fast rule. Had a rough week and can only come up with one thing? That’s OK! “I’m thankful that situation X wasn’t worse” is a perfectly acceptable post.”

  • I’m thankful my surgery has been scheduled. (I’ll be having surgery on my wrist on the 9th of August, I’ll post more information on that soon)
  • Our house closes tomorrow….unless something unforeseen happens our house in NC will no longer be ours soon.
  • We started looking at houses here in Tucson this week and we already have a couple we are interested in…cross fingers we pick the perfect house, this will be our forever home.
  • My father-in-law has a car he’s letting me drive…and it’s a really cool car too.
  • I’m learning to decorate cookies, it’s an edible art form…cool.
  • I’ve been able to admit I might possibly have an eating disorder. I know I’ve written about this before, but it’s worse/different and I’m scared/desperate. Admitting this is the first step, I think, to getting better.
  • I was met by my niece and nephew today with the tightest hugs ever! I feel so loved.
  • I was able to play a game with my husband, his sister and her husband and I didn’t get competitive, I just found it so much fun, I laughed so hard…mostly at myself!
  • I went to the medical cannabis dispensary for the first time and it was very interesting, I learned a lot, and found out I need to learn much more.
  • I had a few hours yesterday with a great reduction in migraine pain. (I took a heck of a lot of medication to get to that point, but it sure was nice to have that break)

I think I could actually add a few more, like I’m very grateful we have A/C in this 112F+ days, I have a big bathtub, I have been able to cook often, I found a few new cooking shows….yes I can find all kinds of things to be grateful for….Oh I have one! Stuart took me to this little park today and it was gorgeous! A little oasis in the middle of the desert, it was amazing!

Aqua Caliente Park – photo by Wendy Holcombe, all rights reserved.

Don’t forget to share your list Thankful list, I’d love to hear all about it.

Up next, more photos from the part.

Mini Update … I tried

I know you can normally find Mindfulness Monday here each week, I tried, but I haven’t been able to write much and I thought I’d explain why.  (it has taken me many days to write this post, so bare with me…mmmkay?)

You may recall that I had De Quervain’s tenosynovitis in my left wrist/thumb earlier this year (you can read about it here), but you may have missed that I now have it in my right wrist.  The left wrist was treated with a cortisone shot and since then I’ve had no problem.  I’ve had 2 cortisone injections in my right wrist and I’m still in pain.  (you can see pictures from the first injection here)  I had the second shot on my birthday (July 2nd) my wrist felt better the first day after the injection, but by the second day I was back to the original symptoms and by the 3rd day it was actually worse.   When I went in for the second injection he gave me the option of having surgery or trying the injection again, he told me that if it didn’t work to just call and schedule the surgery I didn’t even need to come in again.  So I chose to try the injection again, to say those injections are not pleasant is a huge understatement, but I was really hoping to avoid surgery.  After a week, when it was evident that the shot didn’t work, we called to set up the surgery and were told that it was too soon after the injection, I have to wait 4-6 weeks.  I was not a happy person.  I have a lot of limitations because of this issues; I can’t write or draw, I have extreme difficulty brushing my hair, typing, cooking, picking things up with my right hand, swimming…I’ve wearing a brace that holds my wrist and thumb stable, if I don’t wear the brace, I can’t do much at all…unfortunately the brace has started to cause issues on it’s own, 20180717_113113

so I have to stop wearing it.  The good news is that the surgery is almost always successful, and it’s very minimally invasive, in fact they often do it with local anesthesia.  (I will admit I’m a bit intimidated by that, I don’t want to see them cut on my arm…ewww, but I also hate going under general anesthesia, so we’ll see)   I was having a hard time accepting that fact that they were making me wait for the surgery, honestly I was pretty pissed; then I remembered that the way to happiness is acceptance.  I decided to look at the whole situation differently.  It’s only a few weeks difference, they aren’t saying I have to be stuck like this forever.  I stated taking extra supplements that are supposed to help with joint and inflammation issues, hopefully this will reduce the swelling and some pain.  (if you’re interested I’m taking extra turmeric, collagen, glucosamine..I think that’s all)  Even though I’ll still need surgery, if the swelling is down, it should help with recovery.  Accepting this situation made life a bit happier.

On another note, I’m having increased migraines, often with migraine associated vertigo, and cluster headaches.  When we first got here my head actually felt better, but that didn’t last long.  Bright lights are a big trigger for me and it’s really bright here, more than that, now it’s monsoon season so the barometric pressure has been all over the place with crazy storms almost every day, my head is definitely feeling it. 20180716_172608

I’m also having a lot more cluster headaches and I don’t have anything to help them.  I saw a new headache specialist about 3 weeks ago, I wrote about it here.  I felt optimistic after that visit, but I haven’t received the gammaCore that he prescribed, it was supposed to arrive in about 5 days.  We called to find out the status and no one called back, so we called again, and still no call back.  I know that the office was moving but that doesn’t excuse them from paying attention  to their patients.  **Update**  They called late yesterday and it seems that the doctor didn’t have us fill out a form that he should have, so it delayed everything.  The nurse who called said she’s fill it all out and we could sign it the next time we are there, so the gammaCore is now on it’s way!  I should receive it by the end of the week!  Thank goodness.  (the gammaCore treats both cluster headaches and migraines!  again, Thank Goodness!!

So that’s what’s been keeping me away….along with other stress, but that’s for a different day when I can actually type without being in intense pain.  Hunting and pecking with my left hand is not fun.  🙂

“Accept – then act.

Whatever the present moment contains,

Accept it as if you had chosen it.

Always work with it,

Not against it….

This will miraculously transform your whole life.”

~ Eckhart Tolle

 

Meaningful Monday – Suffering

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“Suffering has been stronger than all other teaching,

and has taught me to understand what your heart used to be.

I have been bent and broken, but

—I hope—

Into a better shape.”

Charles Dickens, Great Expectations

“There is the solitude of suffering,

when you go through darkness that is

lonely, intense, and terrible.

Words become powerless to express your pain;

what others hear from your words is

so distant and different from what you are actually suffering.”

John O’Donohue, Anam Cara: A Book of Celtic Wisdom

We must look deeply in order to understand

the needs, aspirations, and suffering

of the person we love.

This is the ground of real love”

~ Thich Nhat Hanh

 

*photo by W. Holcombe.  Baby Opuntia (prickly pear) Cactus.  Please do not use without permission.

I did things a little differently this week, the not all of the quotes would be considered “mindful”, but I felt they were more meaningful this week.

 

 

I want to be a better friend to those who are in pain.

 

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*Content warning: This post discusses suicide and depression.

A friend of mine shared this on Facebook and I had to share it with you.

Why “I love you” and “Please reach out” are the crappiest things to post after someone has died by suicide – by Deanna Zandt

I have been one of those people with good intentions who have simply said the wrong things, and for that, I’m deeply sorry.  I have been there, yet I still don’t know what to say when a friend is in their darkest moments.  I need to always remember, I didn’t want to die because I didn’t feel loved, I simply wanted the pain to stop.  It helped me to have someone sit with me, hold my hand, and simply be a witness to my pain.  It helped me to know that they would help if they could, but that they didn’t try to force this false help on me.  I know these things, but it’s very hard to do these things for someone from afar.  I can’t simply sit with someone when they are in pain if I can’t be physically with them.  Often, when I reach out to someone through texts, or messages, I don’t know what to say after that initial contact. Silence is unacceptable when you are texting.  I want them to know that I care, and I simply want to be there for them.  I know I can’t fix it, but that doesn’t mean I don’t want to.

I also read another article I found interesting: Depression and Suicide: Being mindful and accepting of the pain of the dark days – by Jack C. Surguy M.A. 

Jack Surguy mentions something that I found helpful for me; by accepting that everything changes I can take solace in knowing that these feelings will not last forever.  (even if they feel like they will)  When I’m am suffering I know that it will end, that is actually my mantra when my emotions are all out of wack, “this will end”.  I guess it’s a variation on “this too shall pass”, but that sounds trite to me for some reason.  I promise no matter what you are going through right now, good, bad or indifferent, it will change.

I hope you find both of these articles interesting and possibly helpful.

Right now my wrist is killing me, so I need to stop typing, but after the deaths of Anthony Bourdain and Kate Spade, I felt I needed to talk about this, I want to do better.  I want my friends (you) to know I love them, that I care, and that I respect their pain.  I want them to know this every day, not just times like these.

 

* photo by W. Holcombe.  A red yucca plant viewed while lying down looking at the sky.  I found it stunning.

 

Am I getting worse?

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For the past year  I have been much less symptomatic than I have in years (not counting my trials with my medication side effects).  I was certain that I was prepared if this came to an end.  I’m not.  Right now, I’m scared.  I don’t want to end up like I was a couple of years ago, or what I was like from 2008 – 2016.  I’m trying hard to be okay with my life no matter what.  I got to the point that I was okay when I was sicker, but it’s so much easier when I’m not.

Before you think that all of this is because of the stress of us possibly moving to Tucson and worrying about our family, my increased symptoms started before my mother-in-law’s accident; I’m not saying stress doesn’t make my symptoms worse, but it didn’t cause it.  Although, it may be contributing now.

About 3 or 4 months ago I started having some new gastrointestinal symptoms.  I’m having excessive and extreme belching, the feeling that there is something stuck in my chest, and alternating constipation and diarrhea. Oh, and we can’t forget the excessive smelly flatulence, I really wish we could forget that, and I’m very sure Stuart wishes he wasn’t subjected to it.  I’ve been put on acid reflux medication, something I was finally able to get off of early last year.  I tried 3 different kinds of reflux medication and I’m still having symptoms, they are reduced, but they aren’t gone by a long shot.  I had an endoscopy on Tuesday, and it showed…..nothing.  A little redness, but that’s it.  She did take some biopsies but it’s not expected to show anything.  I’m kinda hoping it does.  Nothing serious, but something that can be treated and I can get off this medicine, that isn’t taking care of things anyway.  A few years ago, I was very sick with gastrointestinal issues and after over a year of testing it was found that I have fructose malabsorption.  (I already knew that I was allergic to wheat and I won’t even get into my experience with gluten)  All I could think yesterday when I heard they found nothing, was oh no, another year of testing, and possibly finding nothing.  Since I’m not throwing up, losing weight unexpectedly, or passing blood; this really isn’t a high priority to doctors.  I’m already on a low FODMAP diet and I don’t really want to make another major change to my diet, but I’m guessing that may be what’s going to happen.  Damnit!

With the crazy weather we’ve had this winter my migraines have gone out of control!  They were a bit better, but recently I’m having migraines every day.  It’s driving me crazy.  The pain goes from a 5 to a 9, sometimes all in the same day.  I’m only supposed to take medication 10 days a month, as of the 12th I’d already taken medication 8 days this month.  Crap, crap, crap!  They say to take migraine meds at the first sign of a migraine, if I did that, I’d be out of meds in 10 days, instead I wait until it either gets to a 7, or it’s been non-stop for a few days.  That really sucks.  I will be taking meds a few more days this month.  I’m going to start a DHE regimen to see if I can break this cycle.  That’s means getting a shot 3 times a day for 3 days.  My butt is going to be so sore, and these shots hurt, but hopefully I’ll feel better next week.  DHE is not a preventative, but it does a good job at stopping a migraine, and it often works on cluster headaches too.  Doing the 3 day regimen is to break the cycle, not to prevent new attacks.

I do start Botox next month.  I tried it a few years ago and it helped for a while, but it stopped working.  We are hoping I have a better response to it now.  My doctor is willing to prescribe the new GammaCore, but insurance won’t cover it and it’s really, really expensive!  Hopefully they’ll cover it in the future.  It’s shown to help with both cluster headaches and acute migraines.  It doesn’t prevent migraines, but it can stop them, and since it’s not a medication I wouldn’t be limited to the 10 – 15 uses a month.  There is also 2 new medications coming out later this year for migraine prevention.  I hope insurance companies will cover them as soon as they come out, a new migraine prevention medication is desperately needed.

I’ve also been much more dizzy.  My balance is worse recently, and the world often spins when I move my head too fast.  Last night I kept having vertigo every time I looked up.  Just moving my eyes to look up made me spin.  That was new, and I hope it never happens again.  I think this increased vertigo is migraine related, but I can’t be sure.

Today I had a confrontation with someone and I didn’t handle it as well as I’d have liked.  It left me shaky and full of anxiety.  When I tried to explain it all to Stuart I got so upset I started to seize.  I haven’t had a seizure in a very long time, luckily this was very minor, but it scared me.  I am happy to say that I calmed myself during this by deep breathing and chanting with Stuart.  Sometimes this mindfulness thing really works.  🙂

Now if I can just take each day as it comes and not worry so much.  My worrying isn’t going to make it better.  I think it’s time to get serious about my meditation practice.

 

Anyone out there go from feeling better to feeling worse again?  How did you handle it?

How do you deal with it when you know something is wrong, but the tests come back normal?

Anyone trying or planning on trying the GammaCore?

How are you guys doing?  Any news?  I haven’t been able to read many blogs lately, or be on social media at all, so many things going on.  But I want to keep up with all of you, so please, how are you?

 

 

A Weekend Getaway

Tuesday was my husband’s 50th birthday, and as I write this he is sitting on the floor putting together a Lego helicopter, he is so cool.

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Kiki thought she would help.

Early last week I realized that this was his 50th birthday!  Oh my goodness!  I hadn’t planned anything really.  Yes, I got him the Legos, and I planned to make him dinner, but that wasn’t enough for this milestone.  I was determined to do something special.  I was on a mission.

This mission was impeded by the fact that I can’t talk on the phone or drive.  Hmm, so what could I do?   What did I do?

First I decided I wanted to take him away, not far, just away from our house.  I wanted to spoil him, so I started looking for a hotel that also provided massages.  First I did a lot of looking on line and I even did a live chat with one representative, but the chat suddenly stopped, the hotel had to be called.  What to do?  At this point I was afraid I wouldn’t be able to follow through on my desire to spoil my husband.  Ah, but I have a friend who I chat with via Messenger almost every day, I asked if by chance she had the time to call the hotel for me, and she did!  She called and stayed on Messenger with me so she could ask me questions.  It worked out great!  It was obvious from the start that the staff at this hotel were incredible, not only was the girl at the front desk helpful, she actually went out of her way and went to the restaurant kitchen to see if they could accommodate my food requirements.  She was not asked to do this, my friend only asked if there was a gluten free menu available, she took it upon herself to try to make sure we would enjoy our stay.  She helped us book a Spa Indulgence weekend.  The girl at the spa was also amazing.  She helped us set up massages for both me and Stuart at the same time.  I wanted a special type of massage, Lomi Lomi, and she made sure I could get it.  (there is only one massage therapist who does this type of massage)  Again, my friend was amazed by how helpful these women were.  It was a very good experience.

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from inside our hotel

I also wanted to take us a little picnic, that way if we had the munchies during the night,  we didn’t have to go forage for food (or spend outrageous amounts on room-service).  Really, I just thought it would be romantic.  Again, an obstacle was in the way, I can’t drive.  How would I get the food for the picnic without Stuart’s help?  I didn’t feel comfortable asking my neighbor to take me to the grocery store, so I decided to look into having some groceries delivered.  I had a little difficulty because the first place I tried to order from had to call to get payment information.  I couldn’t give them my credit card information over the phone, since I can’t talk on the phone.  Bummer.  Of course, I didn’t find this out until AFTER I had done all my shopping.  pfft.  So I found another store that offered delivery and was able to place my order and have it delivered while Stuart was at work.  I did have to tell him we were going away for the weekend, but the picnic was a surprise.

I also got our pet sitter set up.  That was another issue I had to sort out.  Our normal pet sitter was going out of town, but she offered to take Kiki with her.  I know that my dog hates to ride in the car, she gets car sick…poor puppy.  So I called Kiki’s trainer (he helped her feel better about people coming in our house, it still bothers her, but she is much better about it)  He said he could take her for the weekend and I thought that would be the answer, until I found out how far it is to his place.  Kiki’s normal sitter’s trip would mean an hour or so in the car, if she stayed at her trainer’s it would have been a 45 min ride.  Hmmm.  Kiki went on a little trip with her normal sitter.  It all worked out, but it was an ordeal.  And I handled it all through texts, without help from Stuart.

Getting ready for this getaway took a lot out of me, but I’m proud that I was able to do all of these things without Stuart’s help.  He does so much for me, doing this for him meant the world to me.  He was pretty happy with it too.  I’m not even sure if he was happier about the trip, or the fact that I spread my wings and found ways to be a little more independent.

While planning this trip I was so worried that we’d get there and I’d start to feel bad and would ruin everything.  Of course, Stuart wouldn’t have thought it was ruined, but I would have.  It would have broken my heart.  As it turned out, I didn’t sleep well on Friday night and Saturday was a bit of a challenge for me.  I was very dizzy all day and simply felt, bad.  Truthfully, I wanted to stay in bed and sleep all day, instead I got up, had a good breakfast with my husband, and went to the fitness center and did all of my PT exercises.  I was hoping exercising would make me feel better, it didn’t.  We had talked about doing something on Saturday, either before or after our massages, which were scheduled for 2pm, that didn’t happen.  We just vegged and spent time together.  Then we had our Spa Experience.  oh my goodness….

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all ready for my massage

When we arrived at the spa we were taken to the dressing rooms and were given plush robes and slippers to wear.  We were given fruit scented water to drink as we waited.  It was so relaxing, I’m relaxing right now just thinking about it.  We were then taken to a darkened room and were given most delectable massages.  It was a dream.  Afterward, we were again given water in wine glasses and settled in to rest a bit before leaving.  There were also snacks and tea available if we desired.  There were these fabulous lotions there and I actually found one that I like.  Most things have way too much of a scent for me, almost everything I have is either unscented or has a lemon scent, this lotion smells like Fresh Melon.  Stuart loves it, and it doesn’t make me wheeze or give me a migraine…score!

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On both nights we had dinner at the restaurant in the hotel.  The first night we had steaks, they were delicious.  I felt that the vegetables had too much oil on them, but they were still tasty.  The second night we both had fish, it wasn’t as good as the steaks, and again I felt like the vegetables had too much oil.  They were both good meals, they just didn’t seem to be on the same caliber as the rest of the hotel.  Except for desert, I had chocolate crème brûlée, it was divine.  I saved some and had it on both nights.  Stuart had a salted caramel cheese cake, it was go good.  A bit too sweet for me, but very good.  Really the crème brûlée was a bit too sweet for me too, but it was oh so good.

There’s more to tell about this trip….but I might keep that to myself.  😉

This week I’ve paid the price for my excursion, but it was worth the pain and the dizzies.  Stuart is worth it.  It was nice to take care of my caregiver.

Sometimes, it’s just worth it.

 

Have you accomplished something that you didn’t think you could?

Do you sometimes think “it’s worth it”, when you know you are doing something that may deplete all your reserves and have you flaring for days?