A Really Long Update

water droplet on sage leaf

I’ve been saying that I’m “working on a post” for a while now, but I haven’t.  I’m not sure why.  I haven’t been too busy.  I think I’ve just been avoiding talking about things.

My bipolar episode has lasted much longer than I ever anticipated.  I’ve been stable for over 20 years and suddenly I had this awful episode that left me feeling like I didn’t deserve the life I’ve built for myself. I knew if things didn’t change soon, I wouldn’t be able to carry on.  After trying to get my medication working and failing, we decided to go back old school, I’m on Lithium again.  This is the first drug I was put on when I was first diagnosed.  It worked for a very long time, but it damaged my thyroid and we decided to try something else.  Fortunately, at the time, I responded well to the alternative medication.  Since the damage to my thyroid as already happened, there is really no reason for me not to take it, and fortunately, it works really fast.  After being on it for about a week I could tell a huge difference.  I’m still having that low hum that makes me feel like I’m going to explode at any moment.  But I don’t explode, I might get angry, but I don’t have the rage I was experiencing. I just increased my dose, so I’m hopeful that anger hum will diminish soon.

That is the good news. I’m leaving out all the rage episodes, the night I was actively seeking for a treatment center to commit myself because I was very afraid I was going to harm myself or someone else, the anger I felt toward my psychiatrist because I can’t hear a word she says and I have to have my husband in there to help me.  At this last appointment I was so distraught by everything I couldn’t really talk at all, he had to tell her everything.  Before we left I asked where I should go if I were in crisis, she asked if I felt suicidal, I told her how I had been feeling, she simply told me which facility I should go to, but I didn’t feel like she took me seriously.  Perhaps I’m being overly sensitive and she understands that hubby will be here to monitor me and see me through this trying time. It’s very hard to get to know a doctor when you are in the throws of a  (disphoric mania) mixed stated bipolar episode.   Yes, I did say, mixed state.  I’ve only talked about the rage here, but I’ve been bouncing around from extreme anger, severe depression, and wanting to jump my husband’s bones….all in the same day. Sound a little crazy?  Yep, I felt that way too.  Thankfully, it’s calming down and I’m feeling more like myself.

Unfortunately, I can’t say the same for my health.  The vertigo, migraines, and hypoglycemia have had me pretty sick, most of the time. Last Saturday we went out to breakfast with my father-in-law, shortly after getting our food the world started to spin.  I lowered my head, took my meds,  and told them to continue.  I was sure it was going to be a quick attack and I’d be okay in just a little bit.  I might not be able to eat, but I could take it with me.  I was wrong. The spinning got worse and I was afraid I was going to vomit right therein the middle of the restaurant.  I got Stuart to get me a throw up bag from my purse and I clutched it tight.  I told him it was BAD, REALLY BAD, and I needed to go home.  I motioned for him to get the food to go.  Hey, I wanted my pancake!  I really didn’t think about how hard it would be for me to walk out.  I couldn’t focus and I felt like my body was moving in ways that my brain really wasn’t telling it to.  The sensation of  being moved from forces that no one else sees is very disturbing. I used to think I had gotten to the point that I was okay with all of this, but I really,really hate it.  I knew my feet weren’t going straight, I kept trying to compensate, that seemed to make it worse.  I clutched on to Stuart for dear life.  It was absolutely mortifying.  The only thing that would have made it worse,is if I had thrown up too.  I will say,my brain seems to deal with the episodes better than it used to, I rarely throw up anymore.  Of course, I did get a Phenergan in me at the very first sign of the attack, and as soon as we got outside Iused my vape pen that’s 4:1 CBD:THC just a little and it calmed my stomach right down.  I also never feel the psychoactive effects with this ratio.  Itis still illegal to use medicinals in public, under normal circumstances I’d never do it, but we were away from other people, and since people use those cigarette vape pens, no one knows what I’m doing. But as I said, normally, I’d never use that in public.  I thought about using an infused candy or tincture, but they simply don’t start working fast enough to help stop vomiting.  But I digress….  This was the first time my father-in-law has seen this, that was hard, but I’m relieved he does understand some of what I go through before he moves in with us.  He also handled it with grace and was very helpful to Stuart.  Not that I really noticed at the time.

I’ve had a lot of challenged with my balance this past month.  Kinda regretting buy a car, but even if I can’t drive it, it’s nice to have a convertible in the family.  I am very disappointed that I can’t drive though, having that feeling of independence was nice.  I was still having vertigo occasionally, but it didn’t last long, it was mild in intensity, and I always had signals that twas about to happen, so I wasn’t afraid to drive.  That all changed.  I accept it, but it makes me sad.

I found a new ENT and I really like his so far.  He admitted that I’ve had all the treatments that he could recommend, yep, I’ve had it all really.  He did say he could give me steroids to try to help with this flare, but since I had Avascular Necrosis that they think was caused by steroid use, I don’t use them if at all possible.  He understood.  He suggested trying Benedryl everyday because it’s a vestibular suppressant.  I never knew that.  I tried it for over a week and didn’t get the results we’d hoped for. So I asked if I could take diazepam for a week or two to try to calm itdown and he said yes.  Also, the Audiologist there called and said she isn’t as experienced working with my brand of cochlear implants so they are having the Advanced Bionics specialist come in to do the adjustment to my CI’s (mapping).  I was so very impressed with that.

I’m also working on getting a new migraine specialist, I really don’t like the guy I’ve been seeing. So cross your fingers I like the new lady.

I’ve done something that I’m afraid I may have a very hard time pulling off.  We had planned to be in our house by now and we planned to host Christmas there.  Well….I decided we still needed to do it, but man is it going to be a lot of work.  I’ve invited the whole family, and one friend. That’s 6 adults and 2 children.. 

But this is the first Christmas that Stuart’s step-mother will not be home.  I feel it’s important for his father to be surrounded by all of his family for a Christmas celebration.  We are having it on the 22nd so Dad can spend Christmas day with his wife. We have been thinking about joining them, but it’s a busy time at the home, and her daughter and her significant other will be there.  So, I think it will be good to go have dinner with her between Christmas and Thanksgiving.

I’ve been trying to make cookies, the kind you decorate all pretty with royal icing.  I decided they were WAY too sweet with the icing, since it is just a sugar cookie, so I’ve been trying to make the icing less sweet.  Problem is, as I have been working on a new recipe I have to keep tasting it.  This stuff is super sweet…cloyingly sweet.  So twice now, I’ve had a hypoglycemic crash.  Feeling dizzy, light headed, sick to my stomach….ok so none of that is new….cold sweats, shakes, stomach cramps….I even threw up.   Yep, blood sugar drop.  Now I’m not even sure I ever want to decorate cookies.  My back always hurts when I do it anyway.

Oh…other challenges this week.  I had my physical on Monday.  All my numbers were good!  Even my triglycerides, they have only been normal one other time in my life. Shockers!   However, I was having a slight pain in my kidney area and asked if she’d check my urine.  I’m so glad I did!  By the next day I was in severe pain, still am if I’m honest, and the nurse called and said that I have a UTI.  HAHAHA I found that amusing because I really had no idea when I asked for the test.  My back has been hurting so I thought it was just that, it was obvious the next day that is wasn’t.  So now I’m taking antibiotics…eww.  Can you imagine how much worse it would have gotten if I had needed to go back to the doctor for a test?  Phew!  that was lucky.

I also got a pneumonia vaccine, I had to have one when I got my cochlear implants, and I was supposed to get a booster in a few years, I’m about a year late, but I got it done. (it is supposed to reduce the chance of meningitis)   1% of the people who get this vaccine have a reaction to it.  Yes, I am that special!  The injection site swelled up and turned read.  It measured about 3” in diameter, and it was so painful.  If I moved my arm a very sharp pain would shoot through, not as if the muscle was sore, a very sharp pain.  I couldn’t lie on that side for over 3 days.  Finally it is feeling almost back to normal.   Golly, that was an experience.

There I think I’ve caught you up on all things Wendy for now.

I hope you are having a joyful holiday season.  Try not to overdo, as you can see I probably am…..big dummy.  😊

*photo, “Water Droplet on Sage Leaf” taken by W. Holcombe.  Please do not use without permission.  All rights reserved

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Unsteadily Unstable

For the past month or so I’ve been filled with an inner rage and desperation that has been screaming for help.  I was hearing all the anger, fear, and sadness, but I couldn’t hear the call for help.  This week I finally heard it.  I finally understand that I haven’t been just reacting poorly to the stress in my life, or having mood swings because of a hormones, no, I’ve been having a bipolar episode.  I still know my moods aren’t where they should be, but it’s better than it was, and I will be seeing my doctor about it very soon.

I have so many things I want to say, I don’t know where to start.  hmmmm.

I have been reading about bipolar symptoms, specifically rage, and saw many things that are too familiar.  The rage can be set off by the smallest of things, often something I would never even consider getting mad about on a normal day.  The anger starts and builds quickly to a full blown rage!  After all the screaming and throwing things, and who knows what else, is over I feel better for about 2 minutes then I suddenly think, “Oh my god, What have I just done?”  Bipolar rage if often associated with mania,  but can also manifest during depression.  For me if the rage is from a manic episode I blow up fast and furious, but it burns out as quick as it started, leaving only the guilt and hurt behind.  When the rage comes during a depression episode I will have a huge blow up and it will go down, but he anger is still there, and I will blow up again, or I just stay angry for a long time.  The rage inside wanting to break through the surface.  So rage during mania is like a short burst, the rage during depression is a short burst followed by underlying anger and possibly another burst or two.  Both can cause everlasting damage, but the later is much harder for me to deal with.  When the anger doesn’t just go away after a rage episode I start to think it’s not caused by my mood disorder I’m just a bitch, and I start getting angry at myself.  So much anger, that is so hard for me.  I’m not normally an angry person.

Sometimes I will get angry about something, but I don’t let it get to me, just slough it off – at least I thought I did.  Often when the rage hits it’s after I’ve had a few things happen that have caused me to get mad, but I didn’t feel like it was a big deal, I thought I was just letting it go.  It seems to me that it will often be a little thing that sets it off, but it’s like the last straw kind of thing, all those little things I have gotten mad about suddenly rise to the surface and that one little event that made me blow up was fueled by all those other small flames.

Rage can damage even the closest relationships.  It can cause trouble at work, with your family, friends, authorities….rage can really mess up your life.  I’m so very lucky that my husband understands that my rage may seem focused on him, but it really has nothing to do with him.  Sometimes it does spark conversations and we fix all those little things that built up, but honestly the rage is never deserved. Even though he knows all this, it is still very, very hard on him.  When I get to the breaking point I often leave.  I will pack a bag and set off.  I have no idea where I’m going, and I just get madder because I feel I have no where to go.  When I leave like that it hurts and scares Stuart so much.  During this last episode I made him cry.  My husband does not cry often.

I was mostly stable for over 20 years, but over the last few years I’ve had more than one break through episode.  I’ve needed to change medications too many times.  I’m afraid we are going to get to the point where nothing works.  In addition to Bipolar I disorder, I also have generalized anxiety disorder.  Trying to find medications that treat both and I can tolerate has been a challenge.  I’m hoping the gene test I did will help with that.  I can  definitely say, that the new medication she put me on is not working, we have to find something else.

For over a month now I’ve been dealing with severe anger mixed with depression and anxiety.  I have also been getting tickled over the stupidest stuff and laugh until it hurts, but that doesn’t last long and I return to the negative moods quickly.

I think the rage has also been triggered by the return of my vertigo.  I’m back to having attacks multiple times a day.  I do think many of them are caused by migraine instead of Meniere’s because with some attacks I’ve been having aura right before it starts.  The fear has been real.  Not just the fear that it is coming back, I’m actually starting to accept that I am having a relapse, but I know the is a possibility for a remission.  However, I fear for my safety.  I’ve fallen 3 times in the past 2 weeks.  I’m back to using my walker in the house and sometimes when we go out.  (often when we go out I can use a shopping cart, or Stuart’s arm to steady me enough that I can get by for a bit)  For the most part I’ve been confined to the house, without the ability to do much of anything except watch TV.  I did sit outside once this week, but I had vertigo outside without anyone home, I had a very difficult time getting back inside.  I don’t think I’ll be going outside when I’m home alone any time soon.  I did ask my landlord yesterday if he would be a backup for me if I fell and needed someone and Stuart couldn’t get home, gratefully he said he would.  Of course, he also might not be available, but I’m relieved to know there is someone can call if I need it.

I think that’s enough for today.

I’ll leave you with a few photos I took yesterday of the flowers around my yard.  I miss seeing the leaves change colors, but I’m seeing a different beauty in the desert.  (most of these are Lantanas, technically a weed from Mexico.  It is very pretty and drought resistant. You will find them all over the area.  I’m thrilled to see this gorgeous native plant almost everywhere I go)

 

It’s challenging

I have no idea where to start this post.

I guess I’ll start first by apologizing for having to have Lorraine do Mindfulness Monday for me again this week (thank you Lorraine, you awesome) I have been feeling like a fraud.  I have been talking about mindfulness for a few years now and I simply haven’t been able to live the life.  My life seems out of control right now and I haven’t been able to accept that this is the way it will be and be okay with it.  My meditation practice has never been as regular as I’d like, but lately it has been non existent.  Why is it when I need this the most, I have been unable to simply let that shit go.

Living  in close proximity to family has been more stressful than I thought it would be.  We haven’t been able to help my father-in-law as much as we thought we would.  He simply wants to keep doing as much as he can in addition to caring for his wife, so he has some semblance of normalcy.  We do try to see him at least once a week, but that doesn’t seem like enough to me, and we haven’t been seeing as much of M as I thought we would.  She has no idea who we are and I’m afraid that is making her a little frustrated.  I’m not sure about that though.  She is very pleasant to be with, she talks and talks, I just wish I could hear her better.  Now that I’ve been more symptomatic, it’s hard to do much to help anyway.

My hearing loss has been much more of a challenge here than I thought it would be.  Not only do I have trouble hearing M, I can barely understand anything my niece and nephew say, and my new psychiatrist…well, let’s just say, I won’t be going there without Stuart with me to help translate.  She is very soft spoken and has an accent so she enunciates her words differently, it makes it extremely hard to read her lips.  I wish I knew sign language so I could request an interpreter.  I could request CART, but that’s really hard to set up, so it could make it very hard for me to get an appointment when needed.  I also don’t understand my headache doctor, he also has an accent, he talks fast, and really has no idea how to talk with someone who has profound hearing loss.  That kind of amazes me.  This city has a large elderly population, that means there are more people here who have late onset hearing loss, doctors should know how to communicate with us.  Oh who am I kidding, many doctors don’t know how to communicate with anyone, hearing or not.

The vertigo has gotten worse.  Ironic thing, I just received a letter saying my Medicare benefits are being reviewed, right after that my vertigo started going crazy!  When I finally got Medicare my symptoms started getting better, not immediately, gradually, but it was better.  Was it the extreme stress of feeling like a burden, and the fear that if something happened to Stuart I wouldn’t have insurance or any income, causing my vertigo to be worse?  I have no idea, all I know is that I’m having vertigo again, often, and I’m really upset about it.  I’m even using my walker again, not every day, but I’m definitely getting use out of it again.  I think buying a car was tempting fate, the last time I got a car I got worse….you can see how my mind is just spiraling.  I’m so tired.

To top it all off, I’ve been dealing with some of the worst rage episodes I’ve had in a long time.  I started taking estrogen about 2 weeks ago for menopausal symptoms, I’m thinking that could be it, but since I have Bipolar Disorder it always concerns me.  I do have a call into the doctor, let’s hope we can figure this out before I kill someone.

Speaking of my mental health, my psychiatrist had gene testing done to help determine which drugs are best for me.  The results are very interesting.  I want to share a lot of that with you, but this post is getting long, so I’ll save that for another day.  If you’d like to read more about the test I had, it’s called Genesight, here’s the link to their site.   https://genesight.com/

My back has started seizing again, the muscle spasms stop me from doing a lot of the things I’d like to.  Like baking!

But I was able to do a little celebrating for Halloween (after a complete meltdown on Halloween day, the night turned out pretty good.)

Here’s a few photos of my makeup, one from a festival we went to on Friday and the other for Halloween night to give out treats.  Halloween night wasn’t very inventive, it was the end of a very long and emotional day, so my makeup was not what I had planned.

 

I hope your Halloween was a hauntingly good time.

I’ve been having a hard time writing lately, I may be writing more journal type post, I think I need to get more of this stuff out.

 

 

Mindfulness Monday – Thich Nhat Hanh On Fear

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When I am in need of comfort, and have a desire for knowledge, I often turn to the teachings of Thich Nhat Hanh.  His words resonate with me and make me feel understood.  I hope you find his words as compelling as I do.  (Thich Nhat Hanh is often referred to as Thầy, meaning Teacher, throughout this post I will also refer to him as Thầy)

Below you will find quotes by Thích Nhất Hạnh, from his book Fear: Essential Wisdom for Getting Through the Storm. with comments by me on how these quotes reflect my life right now and help give me peace.

 

“The only way to ease our fear and be truly happy is to acknowledge our fear and look deeply at its source. Instead of trying to escape from our fear, we can invite it up to our awareness and look at it clearly and deeply.”
― Thích Nhất Hạnh

During the past week I have been having vertigo again, even though I’m feeling much better now, the fear of the possibility that things could get worse has been creeping up.  My first instinct is to run from this fear, or push it down and refuse its validity.   After reading this quote I realized how much I have been trying to escape from my fear, I now understand that I need to investigate it’s cause and think about it rationally.

“When we recognize that we have a habit of replaying old events and reacting to new events as if they were the old ones, we can begin to notice when that habit energy comes up. We can then gently remind ourselves that we have another choice. We can look at the moment as it is, a fresh moment, and leave the past for a time when we can look at it compassionately.”
― Thích Nhất Hạnh

Thầy really hit the nail on the head with this one.  For the sake of this post I will only talk about what has presently caused me to replay old events – a vertigo attack.  My automatic response to this attack was a flash back to my worst days experiencing vertigo.  The many days where I could do nothing but watch the world spin were suddenly replaying themselves in my mind.  It is refreshing to know that I have another choice.  I can take this attack as it is, a singular event, it is not part of my past  (well it is now…hopefully you get what I’m saying).  What happened this week was new, yes I’ve had thousands of vertigo attacks, but this was a different one, it was not one that I had already experienced, it was new.  It’s time to let the past go, to look at that time with compassion, especially for myself.

“We are very afraid of being powerless. But we have the power to look deeply at our fears, and then fear cannot control us.”
― Thích Nhất Hạnh

How liberating this quote is!  I often feel that everything in my life is out of my control, that I am powerless.  I lost so much of my independence and then got some back, the vertigo attack brought back all the times that I was so dependent on others for everything.  It’s that loss of control (power) that scares me.  Thầy teaches that we always have power over our fear, yes we will always feel fear, but if we look closely at our fears and really get to the root of it, we can then see that our fear does not control us, we control it.

 

I hope you enjoyed this variation on Mindfulness Monday, if it is well received I may do this type of post more often.  

*photo by W. Holcombe – night sky…yes it really is the moon..in Tucson.  Please do not use without permission.  All rights reserved.  ©

 

And The World Spins Madly On

Early yesterday the barometric pressure took a nosedive and my head went with it.   My head started to throb and the light was excruciating; I took meds and carried on…or I tried to.  I realized I wasn’t up to grocery shopping or cooking to I looked in the pantry and threw a few things in the slow cooker for soup.  Then it was a sit in the chair and knit kind of day, and I was okay with that.

After Stuart got home we had soup…I’m so thrilled with how well that soup turned out, btw.   I left the room to go to the bathroom and I felt it hit….the bottom dropped out of my stomach, I got all hot, and my view began to spin….vertigo.  I leaned, for support, with my forehead and palms resting flat on the wall before me, knowing if I moved I would fall down, I called out for Stuart.   He came and helped me to the bathroom and back to my chair.  The worst had not arrived…

As we got ready for bed I took my nightly meds and started to settle down when I started to feel bad, really bad.  I mentioned to Stuart that my meds were kicking in really fast and I was feeling loopy.  (this does not happen, normally I take my meds and I start feeling sleepy, I read some and then go to sleep, I never feel “loopy” from my night meds)  I decided to just lie still and try to sleep, then I suddenly got hot all over and my stomach wanted to rebel! I laid very still trying hard not to move my head, but it didn’t work, the room began to spin and I felt like I was moving….vertigo…again…damnit!

I tried so hard not to disturb Stuart.  He has to get up really early to go to work and I hate when I have to disrupt his sleep.  He stirred a few times and I admitted I was sick but told him to go back to sleep.  I knew I could handle it, at least I told myself that.  I did sleep some, on and off, all the while feeling like I was moving.  Every slight movement of my head caused the room to spin faster, and my stomach to lurch.  I was not doing well, but I was dealing with it.  I survived the night, and I didn’t vomit, that is a miracle.

Today, I still have this feeling of motion and if I turn my head quickly the room spins, but for the most part it settled down.  Now it’s all the other symptoms that go with vertigo that are still getting to me.  The gastro-intestinal upset, the extreme fatigue, the anxiety, and, of course, my balance is completely compromised.  It’s been a challenging day.

As I sit here writing this I’m reflecting on this illness of mine and how it has manifested itself over the years.  It came on sporadically, having severe vertigo attacks once or twice a year without any other major symptoms, then it turned into me having vertigo multiple times a day, sometimes minor, sometimes very severe, I was basically bed bound for almost 3 years.  Then less than 2 years ago I started having less and less vertigo and the attacks I had were not nearly as severe as they used to be, I have been so much better that I started to drive again.  I even bought a car a couple of weeks ago.  Now, I’m being reminded that this will always be with me.  I will never escape Meniere’s disease, and I’m scared.

The fear escalated through the night and all day today.  My thoughts keep running to the “what if”s.  What if this is a new stage and it’s worse?  What if I can’t drive and I just bought a car?  What if I need more help than is available now?  What if?????

Can you see me spiraling out of control?

Time for a reality break.  Yes, I have Meniere’s and I always will.  Yes, it is unpredictable.  Yes, it could get worse, or it could get better.  Nothing is certain.  Life is not as I expected, so I will change those expectations, or better yet, I won’t have any.  Now, it’s time for a deep breath and a good night’s sleep.  Tomorrow is a different day.

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.

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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.

 

 

 

 

Do you feel inspired?

inspire

We all see them, the chronically ill who are living amazing lives, even doing things above and beyond what most “normals” do.  They don’t let their illnesses stop them.  They thrive despite their illness.  These people are supposed to be an inspiration.  We are to be amazed and we’re supposed to look at them and realize, “Hey, if they can do it so can I.”  (does that really work?)

There always seems to be a celebrity who has the same disease you do.  As a spokesperson for our illness they are supposed to be an inspiration, after all, if they can do it, why can’t I?

Do they really inspire you?  Does it give you hope?  Or does it make you feel inadequate?  Does it make you feel bad because you haven’t been able to do what “normals” would define as remarkable things in spite of our illness.

For me, it’s often the later.  I feel inadequate because I simply cannot do the things I used to, let alone do extraordinary things that I’ve never even thought of doing.

It concerns me that people will compare me to those “inspiring” people and think that I’m exaggerating the severity of my symptoms.  I’ve had well-intentioned friends and family members send me articles about someone who has Meniere’s Disease and how they are are either living amazing lives despite Meniere’s, or they were “cured”.  This happened a lot when Dana White (president of the United Fighting Championship), underwent a treatment for his Meniere’s and it was a “miracle cure”.  What they don’t realize is that there is more than one cause of Meniere’s, so his treatment may do nothing for me; he has Meniere’s in one ear, I have it in both.  They also seem to ignore the fact that he had to go to Germany to have this procedure done….ummm, who’s going to pay for this?  Not my insurance that’s for sure.  and just how safe is it?  After they send these messages, I wonder, do they think I’m not doing everything I can?

When we hear that someone is an inspiration, it is supposed to be a positive thing, but inspiration can be negative.  You can inspire people to do bad things.  Look at Charles Manson or Adolf Hitler, for example, they inspired people to do all kinds of horrible things.  They were very inspirational, just not like we have been conditioned to think of the word.

The people who inspire me to try harder, to live more fully, to embrace life, and simply care more are the amazing people I meet who have chronic illnesses and can still love their life, with all it’s limitations.  I’m amazed by the people who undergo many painful medical procedures and still greet each day with love.  I’m positively inspired by those who are able to push through and do the everyday things, even when life is just so hard. The people who show compassion and support to others despite the fact that they get so little themselves, these are some of the people who inspire me to be the best me I can.

I’m not saying that famous people can’t be a positive inspiration, I’m simply saying that is not always the case.  When I see a list of famous people who suffer from vertigo, it doesn’t inspire me to do anything.  I feel compassion for them, and I often wonder exactly how much they battle with their illness behind the scenes.  What are we not seeing?  The phrase, “but you don’t look sick”, sure hits home when we see someone like the beautiful Selena Gomez, who has Lupus.

Then I hear things like, “Nicolas Cage suffers from vertigo all the time”.  Ummm, really?  All-the-time?  I could believe he has disequilibrium all the time, but full blown vertigo, no way.  I simply do not believe it.  If he has vertigo all the time and can function as well as he does, that would be a miracle.  I can believe that he may have recurring vertigo, but not constantly.  I’m pretty sure I’d kill myself if I had full blown vertigo all the time.

 

Who inspires you to be the best you can be?

Do you get positively inspired by famous people who have your illness?

Does it make you feel inadequate when you hear that someone who has the same illness that you have has done something like run marathons, or started a successful business, or has won the “Golden Buzzer” award on America’s Got Talent, like Mandy Harvey did, who is deaf?

Am I the only one who is rarely “inspired” by these stories?

 

*image is a screen shot from Dictionary.com