mini update…it’s all about me

20180902_140241It’s Labor Day, for most it’s a time to a honor the workers of America, and send the summer off with a bang.  For me, Labor Day this year marks my 14th wedding anniversary.  I can honestly say, I’d marry this may again in a minute!  It sure doesn’t feel like our wedding was 14 years ago, yet, it feels like we’ve known each other forever.

We had planned to go on a day trip to just get away, but things haven’t quite turned out as we’d planned; maybe we’ll make it there soon.  Instead we went to the botanical gardens here in town, it was like walking into a secret garden, I really needed to get out and commune with nature.  I’m so glad we Stuart talked me into going.

(I’m actually starting to get sleepy, but I really wanted to post this now, so I haven’t read over this, please excuse any and all errors, if something doesn’t make sense, let me know.)

sleep: After reading the comments left of my post about my lack of sleep and extreme fatigue, I have tried a few things and I think I may have discovered a couple of things that may have been contributing to it.

  • One – allergies.  It was suggested that this might be the case so I checked looked up what might be causing that, and found out that ragweed is causing MODERATE pollen counts.  I’m very allergic to ragweed, so I increased my antihistamines and have been doing a saline spray.  I wish I could use a Neti Pot but it causes vertigo.
  • Two – mood swings.  Someone mentioned that when she is feeling the way I have been that she knows she is a bit manic.  Well that sent up bells and whistles.  I realized just how quick to anger I have been lately.  I’ve been cutting myself off from people.  I am trying to make an effort, but it has just been so hard.  I’m simply having a hard time putting forth the effort.  I’m sorry I’ve been neglecting my people.  I’m also having uncontrollable crying spells.  Today (I’m wring this on Sunday night) I just couldn’t stop my eyes from leaking.  It annoyed the hell out of me.  So, have I been a bit hypomanic, that would cause the anger and the lack of sleep, but it doesn’t explain the tears.  Could I been depressed?  Is it possible to be experiencing both at the same time?  After being diagnosed with bipolar I over 22 years ago, you’d think I could figure this out, but I must admit my moods have not been as stable this past year as they have been for many, many years.  I’m not having full blown mania or severe depression, but I’m having a very hard time coping.  I’m also having a very hard time holding my tongue, and unfortunately I have been hiding how I’ve been feeling from almost everyone (I do share these things with Stuart, we are in this together) including someone who is causing me some severe anxiety.  I’d really like to cut this person out of my life, but it’s just not possible, at least not right now.  I’m trying hard to just let it go, and be gentle with myself.  I understand that I’m really getting upset because this person is not behaving as I expect people to, it is these expectations that I have to let go of.  But the drama is affecting other people in my life and that is causing me more anxiety.  I’m sure most of that makes no sense, but it felt good to get it out, even if it is a little cryptic.
  • Gabapentin – I’ve been taking 100 mg of gabapentin 3 times a day for a while now, and it hasn’t really bothered me.  I take 200 mg at bed time and 100 mg upon waking.  If I don’t take this my arm goes to sleep and aches, my back hurts more and my aches and pains are more intense.  Since moving here I’ve needed to refill my prescription a couple of time and I noticed that the manufacturer is differnt than the one who supplied my pharmacy in NC.  I can’t help but wonder if that changed things.  so for the past couple of days I haven’t been taking my morning dose and honestly I haven’t been nearly as sleepy during the day. That’s unfortunate because my pain has increased quite a bit.
  • Stress and anxiety.  We’ve talked about this before, but I have spent a number of hours awake lately when I simply could not shut my brain off.

What I discovered was not an issue.  My use of medical marijuana.  For the most part I’ve been using mostly CBD during the day. You can read recent studies on sleep and CBD on NCBI  To make sure the CBD was not causing my insomnia and/or my daytime fatigue I decided to stop taking it for a while.  After 2 weeks I saw no difference with my sleep, but did notice an increase in my headaches and anxiety.  I haven’t been using any cannabis with THC duing the daytime.  I have still been taking it right before I go to bed, it does help me sleep for about 4 hours at least.  (note I’ve been using marijuana to help me sleep for a couple of years now)

Increase in physical symptoms: I’ve been much better for a while now…my vertigo has been almost non-existent at least 9 months now.  This past week, it has been worse again.  I haven’t been having full rotational spins for the most part, but I have been seeing things move and I feel like I’m moving.  I’ve had a few spells this week that caused Stuart to come home early to help me.  I haven’t thrown up from vertigo in quite some time.  Even before I stopped having vertigo on a regular basis, I had stopped vomiting.  I normally use a little cannabis to stop the nausea and vomiting, but I was trying hard this week to not do that, I wanted to make sure it wasn’t causing me to lose sleep.  Well, it wasn’t and I will be using it to help with the vomiting the next time I have vertigo.  My migraines have also increased, and I don’t feel like the gammaCore is doing much.  That makes me sad.  To be completely honest, I’m having a very hard time staying in the present and not freaking out over the thought that I might get back like I was.  I’m already afraid to drive again.  Shoot.

House search: We still haven’t come close to finding a house that is suitable, there just aren’t very many houses that have the features we want/need.  Now we’ve found a little snafu on our credit report that we need to clear up.  It’s sad when someone has a credit score of over 800 and the ability to put down a down payment of over 20%, and we are having trouble getting pre-approved.  There’s something wrong with that picture.  We are hoping we can get it straight soon.  If not we’ll just rent for a while. I’m trying hard not to stress over it.

Eating:  I still feel like food is controlling my life.  I recently had a week where I wasn’t starving all the time and I was able to stay in my calorie range.  I’m terrified of gaining all that weight back, yet I can’t seem to stop eating, and that is simply tearing me up inside.  I did find a cool app called Mealime and it has been a great help in planning meals that are pretty easy and healthy too.  Now if I could just control the snaking, especially in the middle of the night.  How did I go from having to force myself to eat, to overeating?

Doctors: It has been a challenge finding doctors here.  Most of the doctors I found on the BCBS site who said they were accepting new patients actually weren’t.  I do like the PCP that I found, except for a couple of things, I’m hoping those things will resolve themselves after we get to know each other better.  (like she isn’t comfortable prescribing my Valium for the vertigo.  I don’t take if often, but if I’m having vertigo that is the only thing that helps calm it down.  I do not take it as an anxiety medication, nor do I over use it.  My last prescription of 90 pills lasted me almost a year!  She doesn’t seem to understand that it is the best vestibular suppressant out there.  I will have to find an ENT.  I want to see a neurotolgist here in town, but he only sees patients that have been refereed by an ENT.  So I have to find one of them first.  Argh, what a pain!  I am hoping he can treat both my Meniere’s an my migraines though, so I really hope I can get in there to at least talk to him and see if he can offer any help at all.  I do like my neurologist now, well what I learned in my first visit to see him anyway, but I do not like how hard he is to get in touch with, nor do I feel like his staff is very helpful.  Recently I had a seizure, my first in a very long time, the next day he called my neuro and left a message about it.  No one ever called back.  I had a seizure and NO ONE CALLED BACK?!?   The doctor who operated on my wrist was not as thorough as I felt he should have been.  Every time he was in the exam room with me I felt he was always on his way out the door.  I didn’t feel like he answered all my questions and I didn’t feel like I had clear enough discharge instructions.  He also didn’t even talk with Stuart after my surgery.  Talking to me right after I wake up is not a good time to expect me to retain information.  They did send me a survey to fill out and I spoke up about my feelings, I’m proud of myself for that. I was told by the resident who took my stitches out that I could have pain from the healing for a year. wow!  Didn’t expect that one.

That’s all for now….I guess that was a bit longer than a “mini update”  perhaps I should have called it a “maxi update”  🙂

*photo taken by W. Holcombe at Tucson Botanical Gardens, Tucson, AZ – all rights reserved.  Please do not copy without permission.

 

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?

 

 

 

 

Awake….still awake.

image by CartoonChurch.com

I’ve started writing two posts in the past two days but feel like the words are all coming out jumbled, or I’m just rambling on.

I’m still having a difficult time sleeping.  So as I write this completely sleep deprived, please over look any errors….or stuff that just isn’t right.

I realize that I hate going to sleep.  I hate the process of falling asleep, I hate the dreaming, I hate the waking…

Ok…so I don’t really hate it, but I don’t have good feelings about any of it.  Most of the time when I’m falling asleep I get the sensation that I’m starting to have vertigo.  I’ll feel like I’m spinning and falling, and I’ll jerk awake, this happens over and over until I’m so shaken I just lie there with my eyes open staring at anything that is still and I know will not move.

I often have nightmares.  Some are just unsettling, some are very frightening, and many are so sad I wake up with tears running down my face.

More often than not lately I wake up with a migraine.  Some days I wake up feeling a bit spinny, but most days my head is killing me.

So with all of this, would you want to go to sleep?

How do I get over these fears?  How do I stop the sensations I get as I’m falling asleep?  How to I at least reduce the nightmares?  How can I ensure I won’t feel worse when I wake up?

Yeah, I don’t know either.

It’s nearly 5am.  We have guest arriving tomorrow around noon.  I need to sleep so I’ll be up when they get here.

A dear friend of mine is pregnant, unfortunately she is having complications.  She and her husband live on the coast, so they need to be as close to a good hospital with a Neonatal ICU (NICU).  The University of North Carolina’s hospital has one of the best NICU’s.  (or so I’ve been told)  Luckily, we live pretty close to UNC.  So friend and her hubby will be staying with us for a while.  She has preeclampsia, and high Cerebrospinal Fluid Pressure (I can relate with her there!)  Right now she’s heading into her 31st week, they are trying to get her to 37.   So they could be here for a while.  I’m glad, and nervous.

I don’t know a lot about pregnancies, especially not pregnancies with complications.

If anyone can answer some of these questions I’d appreciate it.

She’s on bed rest.  Do you think she can climb the stairs?  Unfortunately, we just found out that the shower in our guest bathroom is not working properly.  If a woman is on bed rest, can she take a shower?  Or does she need to have sponge baths?  We have a shower in our bathroom, but it’s not very big.  I even feel a bit cramped in there, I’m not sure if a very pregnant woman will feel comfortable in there.  The only other shower is downstairs.  Which do you think is the best option?

Do you know of anything I can do to make them more comfortable?

Since she’s on bed rest, does that mean she’ll need to stay in bed, or will she want to move to the couch during the day?  (another trip downstairs)  We only have one cable box, and right now we have it in our room, it’s been in here since my surgery.  However, we rarely watch it.  I’m thinking we could put it in their room.  I’ve ordered a book she’s been wanting, bought a magazine she likes, and some snacks I know are her favorites.

Luckily, I have dinner ready to go in the slow cooker in the morning, it’ll be done by late afternoon.  (Meatballs and Spaghetti sauce.  In the slow cooker, how cool is that?)   Oh crap, I just remembered, she’s lactose intolerant, and my meatballs have Parmesan cheese in them.  Well, I’ll have to think of something.

Any suggestions on how I can make things easier on the husband?  I know he has to be stressed, he hasn’t left her side for weeks.  He’s usually such a laid back guy, I just can’t imagine him really being stressed, but then I can’t imagine anyone not being stressed under these circumstances.

Stuart’s worried he will go crazy having people here for possibly 6 weeks.  (hopefully, 6 weeks, we do want that little baby boy to be as close to term as possible.)  He’s also afraid of the extra expense it’s going to be feeding two more people.  And now that I remembered she’s lactose intolerant, that throws a wrench in some of our normal meals.  (I really like cheese.)

So that’s what’s going on in my house right now.

I had much more to talk about, but these are the most important issues right now.

Oh sleep, perchance to dream….but please be good dreams.

 

Dizzy Day – and an update on SOPA and PIPA.

I should have known better.

As I’ve mentioned before, I haven’t had the greatest sleep schedule, or sleep at all really.  So my doctor put me on Rozerem.  Rozerem is a sleep aid, but it isn’t addictive, and can take up to a week for full effects.  4% of the patients had increased dizziness compared to 3% who took the placebo.  So a good choice for me, right?  Umm, not so much.  It was prescribed before my surgery and each time I took it I woke up with vertigo.

Rozerem Ad

Last night I decided to give it a try again, thinking possibly it would be different now since things have calmed down so much.

Yes, I should have known better.  I woke up, not with vertigo exactly, but the world is not being still!  I’m using the walker to get to the bathroom and every time I move my head to either side I feel like I’m going to barf.  I have acid reflux so bad, it hurts all the way down my esophagus and into my stomach.  Neither my prescription acid medication nor Maalox is working.  And the diarrhea is back.  (yes I had one day of normality, yesterday, I’ve not eaten any vegetables, except a pickle and a piece of lettuce on my burger yesterday, for 3 days.  The burgers I made, so I know they were safe.  I think most of the diarrhea today is because of the spinny head.  It does put me in the fight or flight mode, constantly expecting a full-blown attack.

I got the book Food Intolerance Management Plan by Sue Shepherd yesterday.  It has the most up to date information about Fructose Malabsorption and other food intolerances.  Sue Shepherd is considered THE expert in Fructose Malabsorption (FructMal).  So I looked at the book, from cover to cover yesterday.  I just knew I’d find something I’ve been doing wrong.  Nope.  I’ve been eating all safe foods.  This book gives a lot more variety than I’ve been eating, and says I can eat much larger servings than I have been.  So why is it that every time I eat a vegetable, I get sick?  Ugh!  I’m working on it.  That’s my big goal this year, find out how to stop this GI trouble!  Then I’ll think about losing weight.

So enough about my bad day.  (we all know, it’s just a day, one day at a time right?)

Image credits: hikingartist.com

A friend of mine works for Red Hat. It’s the world’s Open Source leader, according to their website.  (yes, I’m a big foggy on all of that.  So not the geek.)  My friend, Ruth, wrote an article about SOPA and PIPA.  Here’s the link: http://opensource.com/life/12/1/sopa-shelved-fight-must-turn-pipa-wikipedia-will-join-blackout

The title tells the story in a nutshell.  SOPA shelved, Fight must turn to PIPA. Wikipedia will join blackout.

Did you see the last part…Wikipedia will join the Blackout!!!  (Don’t forget the Blackout is the 18th, so you may be on line and not be able to find many of your favorite spots.)

If Google would join, that would make all the difference.  Could you imagine a day without Google?  Even just shutting down their search engine would make a huge statement.  But alas, I doubt they will.

However, it also looks like WordPress has joined the strike, so my blog may not show up anyway.  Neither would any other blog on WordPress.

On a different soap box….Don’t forget to PLEASE sign the petition about Headache Disorders – The Petition is Here.

Now, I’m going to take a nap, and hope my head is less wonky when I get up!