Finally! It Arrived!!

Just in time for Ten Things of Thankful I received something to be very thankful for indeed!

My gammaCore arrived!!

I’ve been having a heck of a time with fatigue and migraines, so this little gem was met with much joy!  I’ve used it a few times already today, I can’t say for sure how much it has helped yet because I used it in conjunction with other medications, but I can say that my migraine did get better!  Yay!!  There’s a lot of drawbacks about this little thing, like how long it took to get it here, it isn’t rechargeable so you have to get a new one every month, (that’s a lot of garbage!) and it stops working in a month even if you haven’t used it hardly at all.  They really have a racket going on here….but if it works, how I can not use it?  I’ll do an update on it soon!!

There are a few more things I’m thankful for this week:

  • the kindness of friends (and some strangers).
  • not having to go to work every day, because I wouldn’t have been able to lately.  (never thought I’d be thankful I’m disabled…I’m just differently abled)
  • we’re looking for a house, this is not a fun experience, but I’m so grateful we are able to buy our own home and hopefully soon we will find the perfect place for our family.
  • we were able to babysit last week and we didn’t die, nor kill anyone. hahaha
  • my niece is reading a book and telling me all about it. (she literally just texted me before she went to bed.  She’s 10)
  • I didn’t throw up in public.  Okay that sounds strange but we were out on Sunday and I took a swallow of water while we were walking and suddenly I got choked.  I coughed and gagged and water spewed out of my mouth and nose, I was so embarrassed, but I didn’t throw up, that was a victory!!
  • we have A/C.  We live in Tucson, AZ; if I didn’t have A/C I would die. That’s not an exaggeration.
  • I’m not homeless.  There is a huge homeless population here, it really makes me realize how very lucky I am.  (and it annoys the heck out of me that so many people here assume that all homeless are addicts!  Really?  Wake up people!  It can happen to anyone!)
  • I was able to get a topical ointment for pain from the medical marijuana dispensary today.  It is all CBD, so anyone could buy it, but I like getting it from the dispensary because they independently test everything so I know it has what is says it does in it, and the girl that I talked with there today was so knowledgeable!  I’m learning so much.  I’m hoping the ointment will help me sleep tonight, my wrist/thumb have been keeping me up at night.  (Don’t worry dear friends, it’s healing nicely, it just takes time).  I also got some gummies to help me sleep, they do have THC in them so unless you are in a legal state you couldn’t get them.  I’m very grateful I live in a legal state.

 

That’s all for now.  I have been writing a post on my experiencesgetting my medicinal card and my first trip to the dispensary.  I’m sorry it is taking me so long, recovery has been easier than I expected, but it has made me very tired; it is a struggle to get things done and sometimes the pain won’t allow me to type long.

Thank you all for hanging in there with me.   I’m very thankful for you.

What are you thankful for this week?  I’d love to hear about it.

Check out the rest of the participants in the TToT challenge, and perhaps join us, reading what others are thankful for always fills me with such joy.

TToT

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Stress? Who’s stressed?

I swear if I hear one more person say that something that is wrong with me is due to stress I will scream!  I have felt this way for many years.  When I was having vertigo daily they said it was made worse by “stress”.  When my asthma went crazy, they said “stress”.  When I had severe GI issues for months, I was told I needed to reduce my “stress”.  You know the last time I looked stress does not cause Meniere’s Disease, or allergy onset asthma, or fructose malabsorption.  Don’t get me wrong, I know stress can do a number on you, but I feel like it’s a catch all.  If they don’t know, then it’s stress, after all if they can’t fix it then it has to be MY FAULT.

Finally, I am having issues that I think may actually be caused by stress.  I will be the first to admit the last few months have been pretty stressful.  My mother-in-law was placed in long term care, we moved across the country, I left my sister with the understanding that we may never see each other again, Stuart started a new job, I’m finding new doctors, I have to have surgery on my wrist on TUESDAY, I don’t know how long to expect to be out of commission to recover from said surgery (I hate being so dependent, not having use of my dominant hand is hard), we’re looking for a house (and not finding what we want), we’ve been looking at cars (for me),  I’m starting to drive again, we’re living in a small house that I can’t get organized because we don’t want to get too settled since we will be moving again soon, I’m suddenly surrounded by family (some of that’s good, some not so good)…………….WOW. writing all of that out was stressful, and I haven’t listed everything.

20180718_131709

This is me with a migraine, the right side of my face gets all numb and droopy.  #realmigrainepose

For over a month my migraines and cluster headaches were much, much worse, is this because of the stress, or is it causing more stress….short answer, Yes.  I must say though, for the past week they’ve been getting better, I think it’s because of the medical marijuana I’ve started using (more about that soon).  I’m having some GI issues that just don’t want to stop.  (it’s even waking me up at night, and I haven’t made it to the bathroom a couple of times…is this all from stress, who knows, but I doubt it’s helping),  I’m irritable, quick to anger, and just plain grumpy.  I’m overwhelmed and in pain, and I’m taking it out on everyone else.  I don’t like myself right now.  My anxiety has increased, but it’s not too bad, yet.  I’ve been a little depressed, but it’s not all consuming.  So, there’s a lot to be stressed about and it’s kind of taking it’s toll.

I’m trying to meditate every day, but it seems the more stressed I am the harder it is for me to meditate.  I feel like I’m not being very mindful either.  I’m living too much in the future.  We are buying our forever home and I keep thinking things like, “I don’t want a pool because I don’t want to keep it up when I’m 70”, “I don’t want any stairs because I might get sicker again, and I also we might now be able to climb stairs in a few years.”, and my personal favorite, as I’ve been going though things and deciding what to keep I keep thinking, “will anyone care about this when I die?” ….I just turned 55, I’m not that old, but I sure am living like I am.  (except I want a cool yellow car, that will keep me young)  I worry about how M’s condition will advance.  I worry about Dad, he spends all his time at the home what M, and she’s beginning to have moments where she doesn’t remember who he is exactly.  How is he going to handle it when she no longer knows who he is.  Then I think about what M’s daughter said, she told me about another relative who had Alzheimer’s and how they told her that they may not know who she is, but they know they love her.  I think Margaret will always know she loves Dad.  It breaks my heart every day though to see this amazing woman slip away.  (she just turned 77)

I really want to get back to focusing on living in the moment and simply not worrying about the rest.  Why worry about the now? It’s going to be gone in an instant.  I want to invite joy in my life.  I want to step away from the drama that I’ve found myself dropped into.  I need to nurture my inner self.

Little update on me: My surgery is scheduled for Tuesday, the 7th.  It is a minor surgery, I’m not even put under general anesthesia.  They just put a little incision on the inside of my wrist below the thumb (on the side, not the palm) and snip a little to release the tendons.  When I saw the doctor in Charlotte, NC, he told me that often when the injections don’t do anything that there are actually 3 tendons running through the sheath instead of 2.  He said they don’t know why but it often doesn’t show symptoms until middle age.  This is even more probably since I have it in both wrist, luckily the injection worked pretty well in the left wrist though.  The doctor here didn’t mention it, but he did comment that the orthopedics department at Atrium Health (formally known as Carolinas Heathcare System) is one of the best in the country.  (right now they are ranked number 3)  So I kind of believe the doctor at CHS.

My migraines have improved some since I started using medical marijuana.  Most of what I’m taking is a very high grade of CBD oil.  I will write a post soon telling you all about my journey through getting a card, learning what to buy, and my experience in the dispensary.  The gammaCore has still not arrived.  The doctor’s office dropped the ball when ordering it, then they didn’t put in the request for the free trial for the first month.  (they did change offices this month, and my doctor is new and has been the only doctor in the group to prescribe the gammaCore, all of those factors led to the good up)  The gammaCore company called Stuart last week and told him that it should be no problem getting it approved by my insurance.  If that is the case, why haven’t I received it yet?  I sure could have used it this past month, the cluster headaches have been killer (literally, if I thought I had to live in that kind of pain all the time, I’d kill myself.  Cluster headaches are called Suicide Headaches, because of that very reason, people will kill themselves to get relief.  I start Botox in about a month; I was supposed to start on Thursday, but that was my original surgery date so we cancelled it.   The monsoons are causing a lot of severe barometric changes almost daily, I’m sure this has been one of the reasons my migraines have been so bad, so hopefully they will get much better in a month of so, when the monsoons are over.

 

It’s late and I have a headache, so this post was not even read over to check for errors, please forgive any typos, grammar errors, or other atrocities.

 

 

 

 

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

 

Migraine Awareness Month, my migraine update

migraine awareness

I don’t know who to credit for this image, but it is so true I had to use it. If you know who I should credit, please let me know.

June has been Migraine Awareness Month.  I had planned to do a few posts about migraine, what it is, who gets it, how disabling it can be, new treatments….ect… unfortunately I’ve been having some severe migraines this month and simply haven’t been able to focus well enough to write and get all the facts straight.  It’s not just the pain of the migraine that has stopped me, it’s all the other symptoms that go with it, the fogginess, nausea, insomnia, sensitivity to light, sound and smells….I simply can’t concentrate or get things done.

New Migraine Doctor – On Tuesday I saw a new migraine specialist.  He’s with Banner Health/University of Arrizona’s neurology department.  First impression, he was pretty thorough, and seemed to know what he was doing, however, there were some things he said that I felt were just rude, but it may just be his sense of humor that I didn’t get.  For example, after we went through my history he looked at hubby and said, “Did you know she had all these issues before you married her?”  Then he laughed a little and said he was joking, but honestly that did not make me feel good at all.  But he did take the time to go over my records and listen.  At first I felt that he was going to be a butt, because when I told him all my different types of headaches (chronic migraine, vestibular migraine, cluster headaches, and Intracranial Hypertension), he said, “I don’t believe it”  He questioned if I could have Intracranial Hypertension on top of the rest.  I told him I had numerous lumbar punctures and that diagnosis came from Duke, he seemed to understand then that I really have been diagnosed with these things, they weren’t just speculation.  We went through a huge list of drugs I’ve tried and if they worked at all, and we discussed other treatments that haven’t worked (acupuncture, chiropractic, a ton of supplements….).  He finally said, “So, it sounds like nothing has worked” and I agreed.  (Oh, I was given a complete exam, testing all my reflexes, checking my optic nerve….he really was thorough)  He left the room for a moment and came back with a gammaCore.

gammacore

image courtesy of http://www.gammacore.com

Using the gammaCore – The gammaCore is a non-invasive vagus nerve stimulator.  It’s pretty darn cool actually.   Most of what I’m including next can be found on the gammaCore site, you can read more about it there if you’d like.  https://gammacore.com/

“gammaCore (nVNS) sends gentle, patented stimulation through the skin to activate the vagus nerve, providing relief from migraine and cluster headache pain in a different way than drugs.

  • The vagus nerve is an important highway of communication between your brain and many parts of the body
  • The vagus nerve plays an important role in regulating pain”

He gave me a demo and it was interesting.  You take this little device and put a gel on the electrodes then place it on your neck, right where you’d check someone’s pulse, you increase the signal until you get the results you are looking for (a twitch of your mouth or side of your face) you keep it there for 2 minutes and it cuts off by itself.  They say there’s a beep, but I can’t hear it, I just notice that it stopped, I don’t know why you’d need a beep to tell you that it stops, you can feel it.  People like to give sounds for all kinds of things that really don’t need them, in my opinion anyway.  After it stops on one side, you repeat it on the other side, and that’s it.  That’s a treatment.  If pain persist after 20 minutes, do it again.  After 2 hours, if you still have pain, or if it returns, repeat a treatment.

I will be receiving my gammaCore in the mail in a few days.  The first month is free, I don’t know how much it will cost after that.  When it was first approved earlier this year Stuart called to see if insurance would cover it and they weren’t there yet.  If it helps, I sure hope that insurance will cover at least part of it.   You are supposed to use it at the first sign of migraine pain, unfortunately I am NEVER without a headache, so I need to use it at the first sign that it’s getting bad.  I still don’t feel that the doctor understood that I have a headache ALL THE TIME.   I actually plan on using it as often as I can to see if I can get some lasting relief, maybe I’ll actually have a day without a migraine!  I am cautiously optimistic.  If it doesn’t work, I haven’t lost anything.  If it does work, I will have to decide if I can afford it.

One HUGE thing I hate about the gammaCore is that it’s disposable.  Why can’t they make it so you can charge it or change the battery or something, having to replace this device every month is so wasteful and bad for the environment.  I’m having a very hard time coming to terms with that.  I can only think that they do it this way so that people will have to buy a new one each month, that’s just a rip-off.  What am I supposed to do with all these used devices?  If nothing else, they need a recycling program.  (Yes, I will be suggesting this to them)

Medical Marijuana – I also had an appointment on Wednesday to get approved for my medical marijuana card.  Medical marijuana is legal in Arizona and severe migraine is on the list of conditions that can be treated with it, so I decided to apply.  I should get my card in a couple of weeks.

Full disclosure here, I have been using marijuana to help me for a couple of years now, but I had to rely on what I could get on the street, I don’t know the strains, or anything like that, so results have varied.  Sometimes when the pain hits I can vape a little and it is gone, other times it just makes me feel funny, and other times it does nothing.  I’m hoping that getting it from a dispensary where I will be assured of quality and will know what strains and hybrids I’m getting, I will be able to medicate more successfully; more pain relief with less high feeling would be optimal. After I started using a little every night before I go to bed (I made brownies) my vertigo has been reduced drastically.  When I can’t get it, I have more vertigo again.  This is not an approved condition in Arizona (Meniere’s is an approved condition in some states), but it should be.  I can’t be 100% sure that it’s the marijuana that has helped my vertigo, but it would be some strange coincidence if it isn’t.  It even helps stop an attack….if I start to have a vertigo attack I will vape just a little and it will often stop it, even if it doesn’t stop the vertigo, it stops the vomiting.  I cannot stress how important that is.  The only reason I will go to the ER with all of this (vertigo or migraine) is if I’m also dehydrated.  Throwing up for hours on end will cause dehydration, I know that the marijuana has stopped me from going to the ER numerous times.  I’m so very grateful I have found some relief through medicinals.

As I navigate this new world of treatment, I will post more about it and give you lots of updates.  To learn more about how medical marijuana can help with migraines there’s a great article here: https://www.marijuanadoctors.com/conditions/chronic-migraine/

Now, it has taken me many hours to write this post, so I will close for now.  Hopefully my head will calm down soon and I will be able to write more often.  I would like to thank Lorraine for being so kind and helping me keep up my weekly Mindfulness Monday posts.  They mean a lot to me and it was really hurting me when I couldn’t post.  Thank you Lorraine, you are the best, I love you my friend!!

Have any of you tried the gammaCore?  If not, would you?

How about medical marijuana, have you tried it?  Did it help?

I’d really like to know your experiences.