Tag: Stress

Maxi-Me Update

On By WendyIn Chronic Illness6 Comments
We had a beautiful sunset recently, this is the view from my house. Too bad there’s power lines in there, but the cactus silhouettes sure are pretty

I’m shocked that it’s been so long since I wrote an update on me. The last month, or more has been stressful to say the least.

I just looked back at my last few posts and it looks like I have a lot to catch up on, forgive me if I really have said some of this. I wish I’d written it all before, I like to keep up with things and this is one of the best ways I have of documenting things. So, here goes…

I went to Barrow Headache Clinic in Phoenix, and I really like the doctors there. I saw a neurologist who isn’t part of the actual headache clinic, this was the best way to be seen sooner, the wait to see one of the doctors in the headache clinic was much longer. However, the doctor I did see has been working with the doctors who specialize in headaches. I’ve actually had 3 doctors working on my case. When I had the appointment I didn’t feel rushed at all. I felt like I was respected, that they understood that I’m very knowledgeable about headache disorders (mine in particular) and they trusted me when I told them what I had tried and what didn’t work. They are working hard to help, but they aren’t doing in-patient treatment right now because of the increase in Covid cases. That’s hard. However, they are trying new medications, have changed up some that I was already on (increased some doses, changed forms of some…) So far, I’m very impressed. The only thing I’ve had a hard time with was that I had a hard time getting the patient portal to work, and no one could seem to figure out why. I’d get in, but it had no record of me being seen there, no record of upcoming appointment, no way to message my provider…nothing. Finally it is fixed, that’s making things much easier.

They ordered a Tilt Table Test to see if I’m having blood pressure problems when i stand, or if I have POTS (Postural orthostatic tachycardia syndrome). It did show that my BP is dropping significantly when I stand. (Orthostatic hypotension — also called postural hypotension) It doesn’t appear that I have POTS, if so it’s mild. As you may recall I have been having some pretty high spikes in my BP, which caused a Branch Retinal Vein Occlusion in my left eye, it seems I’ll never recover all of my eyesight in that eye. It’s not bad, but the lower part of my vision is very blurry, it makes it hard to read and to see things clearly on my left side. It may get better, it probably won’t. The last time I went to the retina specialist (about a month ago) it showed that it had bled again, that’s why my vision was a bit worse. I got another shot in my eye, and i go back to him next week. (It was supposed to be a couple of weeks ago, but I had a Meniere’s Flare that lasted over a month). He told me that the reason it bled again is because I had another spike in my BP since the last time I saw him. So, what do we do about my BP. I’m on BP meds for hypertension, which may be causing my BP dropping problems, but it might not. I see my PCP in a week or so to discuss this, I really hope we can figure something out. I’m tired of feeling faint when I stand, my vision blacking and the pain in my head spiking when I squat down and get back up. It’s difficult, if this is contributing to my pain, this needs to change.

I do have hope, but I’m very tired.

The Meniere’s flare really did a number on me. My ENT put me on steroids to break it but it seems to make it worse. It also caused me to be ravenous, emotional, paranoid, restless….it was hard. I looked over my journal entries during that time and they are dark, and very sad.

I’m having wide spread pain. I was diagnosed with fibromyalgia many years ago, but after I made a lot of diet changed, it seemed to calm down a lot. I’d only have short-lived flares. But lately, it hasn’t stopped for quite some time. My body hurts.

I’m very tired. Exhausted.

Stuart is starting a new job next week. It is only paritally remote, he will have to go in to the office some. That makes me nervous. I’m okay, trying not to worry about the future, sometimes I succeed, sometimes I don’t. Of course the Meniere’s flare showed me the worst that could happen. I had severe disequilibrium and minor vertigo for so long. I couldn’t even walk by myself. My walker was of no use, I was way too off balance and would just tumble over. S even had to help me to the bathroom. I didn’t realize how often I pee! I met with a couple of my neighbors and asked if they knew of anyone who might be able to helpo me when S has to work in the office, taking me to some appointments, perhaps coming to help if I’m too off balance…anything that comes up. Both immediately said they were very willing to help. one can’t drive me to appointment right now (she’s having some trouble with her back and it’s causes neuropathy in her feet, hopefully that won’t last), the other is more than willing when she can. She’s a bit busy so I need to make plans as far in advance as I can. I really hope this works. I’m so amazed how the people in this neighborhood have embraced me. I’m sad I haven’t had the opportunity to meet more of them, but Covid got in the way. I can’t believe we are going on 2 years of this. I don’t think it will ever go away, but I sure hope we can deal with it better/easier in the not to distant future.

Another big stressor, my therapist is retiring. At first I thought it was no big deal. I was okay with everything. Now, not so much. I’ve been very anxious. And I realized just how much I am going to miss her. When I first moved here I knew no one, she was my only real contact with people other than S’s family. That’s not good. So she didn’t just feel like my therapist, she feels like a friend. I’m really going to miss her. It makes me cry just thinking about it. This week I met with a therapist who may be my new therapist, I believe in meeting at least 3 times before deciding that, but I felt very comfortable with her, I think it might be a good fit. She even said that my old therapist could join us in a session to help with the transition. I decided that would be too hard on me trying to hear them both, so they are just going to talk so my old therapist can give her an idea of who I am. My present therapist told me, “I’ll tell you everything we talk about” She is so supportive of me. She’s always telling me how special I am, how se admires how I handle things, how strong I am….I don’t think I come across that way to many other people, I’m glad someone does. I do try so very hard.

Well, I’m getting very emotional so I don’t think I can continue right now.

And I haven’t read it over for errors, I’m sure you’ll understand and it will give you an insight as to how I think I guess.

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Mindfulness Monday – Life as it is

On By WendyIn Chronic Illness, Mindfulness, Quotes14 Comments

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“What would it be like if I could accept life

– accept this moment –

exactly as it is?”

– Tara Brach

 

“How you look at it is

pretty much how you’ll see it.”

 – Rasheed Ogunlaru

 

“Every experience,

no matter how bad it seems,

holds within it a blessing of some kind.

The goal is to find it.”

– Buddha

 

“Don’t let life harden your heart.”

 – Pema Chödrön

 

Today I searched for quotes to help me simply accept life has it is right now, and change my thought process about it all.  I promised someone recently, “Don’t worry I won’t let her steal my joy”, but by the time I said that, I realize I had already allowed that to happen.

The serenity prayer states, “God, grant me the serenity to accept the things I cannot change, Courage to change the things I can, And wisdom to know the difference.”  My biggest problem right now is that I don’t feel I have the wisdom to know the difference.   I’m spinning my wheels trying to figure out what I can change, and if I can’t change things, how can I just accept that?  What blessing do I find in it?  The greatest comfort I have right now is knowing that everything changes.  This is just a blip in my life, it will change…..right??  Please tell me it will change.  Between the stress in my personal life and the stress of politics right now, I just feel overwhelmed.

The holidays are coming up.  I was really looking forward to having the holidays with family, but it is way too complicated for me.  I’m ready to run away and hide for the next couple of months.  Anyone want to come with?

 

*photo by W. Holcombe, all rights reserved.  October Sunset in Tucson.

mini update…it’s all about me

On By WendyIn Chronic Illness14 Comments

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

On By WendyIn Chronic Illness23 Comments

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?

 

 

 

 

Stress? Who’s stressed?

On By WendyIn Chronic Illness, Chronic Pain, Mindfulness, stress17 Comments

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.

 

 

 

 

Ten Things I’m Thankful for This Week

On By WendyIn Chronic Illness, Gratitude15 Comments

Last week was my first time participating in the Ten Things of Thankful challenge, and it made me feel really good.  This week my ten things were not as obvious; I think that  makes it even more important to take note of them.  I’ll be the first to admit, I did not have a good week.  A lot of pain and stress has taken hold of my body, I’m holding on, but it’s getting difficult.  It’s time to step back and figure out how I can make things a little less demanding.  Every weekend is filled with so much to do, when it gets to be Monday I’m in full flare.  That has to stop, but I really like my busy weekends. I haven’t been able to do any of these things in so long, it does my heart good to be able to do them now, but my body is not as happy with me, and I’m afraid if I don’t slow down my body is going to make me.

I’m so very thankful:

  • for my amazing friends who keep me going every day.  Some I “talk” with almost every day, some I don’t keep in touch with as often. but I know they are there for me, and I am so very, very thankful for that.  I can only hope they know I’m there for them too.  I love my people.
  • that I didn’t get really hurt when I fell down the other day.  Yep, I fell, again.  Hey, it’s been a while, and I didn’t fall because I was dizzy or anything like that, I fell because I stepped on something slippery and my foot flew out from under me.  Mostly, it just scared me.
  • that I was able to go back-to-school shopping with my niece.  It’s so much fun getting to know my niece and nephew, I’m so grateful we can now spend so much time together.
  • that a local friend of mine texted me today saying that if there is every an emergency I can call on her.  That really meant the world to me.  She’s local, and I haven’t even seen her yet, I must rectify that.
  • that I have Air Conditioning.  It has been dangerously hot here; I honestly don’t know how anyone could live here without A/C.  There are so many homeless people here, I don’t know how they survive in this heat.  I’m so grateful I have a safe home and don’t have to live on the streets, my heart goes out to those who do.
  • that I have been having fun learning to decorate cookies.  I’ve only just begun to learn about it, but I’m having so much fun discovering this new art form.  I attempted my first watercolor on a cookie this week, it turned out pretty cool, not perfect, but not too bad. 20180725_121650
  • That my father-in-law is letting me use one of his cars, and it’s a really cool car too.  I’m just beginning to drive again, after a few years, so it feels amazing to be able to get to go somewhere whenever I want.  I’ve only gone on one errand so far, I’m very nervous driving here because I don’t know the area and I can’t hear the GPS.  I need to get a GPS that I can see without taking my eyes off the road, that would make things much easier.
  • for cooler mornings.  I’m trying to get up earlier so I can enjoy the weather before it gets too hot, some days I make it, other days, I don’t get out much.
  • that my surgery is soon.  Just got a call this evening that my surgery date has been changed to the 7th. This is causing a bit of inconvenience with Stuart and work. as that was supposed to be a training day for him, I’m grateful he will still be able to take me.
  • that I was able to do write a post.  With my wrist pain, migraines, and additional pain this week, I didn’t think I’d be able to get this done, I’m so grateful that I could do it.

What are you thankful for this week?  I’d love for you to share with me just one thing you are grateful for this week!!

I’ll try and write more about my surgery soon, a little mini update before I have to disappear for a while.

I’m always thankful for you.

 

Am I getting worse?

On By WendyIn Chronic Illness15 Comments

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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?

 

 

Life, it changes in an instant

On By WendyIn Chronic Illness, family16 Comments

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My husband’s stepmother (M) was on her way to a basketball game when she tripped and fell face first on cement.  In that instant, our lives changed forever, we just didn’t know it yet.

After the accident the only real damage evident was the loss of all her front teeth.  She was recovering and was going to be fitted with a bridge, but during her follow-up with her physician to discuss other symptoms she was having, they found that she had dangerously low sodium.   Low sodium can cause swelling, for the most part that’s not dangerous, but “when the cells of the brain swell, it’s much more detrimental.  Because the brain cells are so tightly confined by the skull bones, even a small amount of swelling can be dangerous.  This is particularly dangerous when sodium levels drop rapidly, causing brain cells to swell rapidly, Without immediate medical treatment, this rapid swelling could lead to coma and death.” (1)   M was quickly admitted to the hospital, however, she was nearly comatose before they could lower her sodium levels.

The severe drop in sodium caused havoc with her body, we knew she would require physical rehabilitation.  However, when her sodium levels returned to normal, it was obvious there was something still wrong.

M was having severe issues with her memory.  She could read, but she couldn’t comprehend what she was reading.  There was further testing, and it was found that she had a tiny subdural hematoma.  (later is was determined that the hematoma was worse than initially thought)  There was also talk of Alzheimer’s, as this runs in her family.  (from what I understand she was having minor memory issues before the accident)

Soon it became apparent that M would need long term care.  She is not expected to make a full recovery.  She will be entering a long term care facility in less then 6 weeks, and her children plan to sell her house in 6 months.  I’m not sure if they are selling it because the may need funds, because she is not expected to ever come home, or because it would not be a safe place if she ever did come home because as it is a split level and she has to be very careful not to fall, or a combination of the 3.  She also has osteoporosis and they’ve warned if she breaks a hip or something, they can’t do anything for it and most people often die from it.  (no, her children are not kicking dad out, this was decided by all involved)

M is one of the most logical people I know.  She was a computer programmer for years.  That’s pretty amazing since she is in her late 70’s and computers have come a long way in the last few decades.  She took out a long-term care policy years ago, knowing that Alzheimer’s runs in her family; she wanted to make sure things were taken care of if she also got it later, I wish Stuart had been able to get a policy like that, the insurance will cover all of the cost of the facility, and it’s expensive.  I never dreamed that a good assisted living facility would cost $6000 a month.  From what I understand, this place is just wonderful.  They even have dog and horse therapy.

Stuart’s father (Dad) and M got married about 7 years ago, about 7 years after Stuart’s mother passed away.  (I’m really not sure about the exact time in there)  He moved in with her and they have been living in her house.  This is a major life change not only for M, but also for “dad”.  “Dad” does own 3 houses of his own, but someone is living in 1 with the option to buy, 1 is too far out of town for him to travel to the facility M will be in, and the last one needs some repair.  He plans to sell the last one within the next year.  So “dad” has to find a new place to live.

We’ve been discussing quite a bit recently, before the accident, about where we’d like to make our forever home, where we’d like to eventually retire.  (well, when Stuart retires, I haven’t been able to work in years)  After hearing this news about M, we’ve decided to actively pursue moving to Tucson, AZ.  We have family and friends there, it’s warm there year round, and housing is less expensive.  We’ve discussed this briefly with dad and it sounds as if he would really like us closer.  We plan look for a house that has some kind of room for a guest to live-in; a guest house or little apartment would be ideal; that way dad can live with use without feeling like he is intruding on our marriage.  I’ve looked up doctors and I’m please with the possibilites.  I even found a group that supports adults with hearing loss.  Now, Stuart just has to find a job.

This is a major life change for everyone in our family.

It’s a lot to process.

 

In a moment, everything can change….drastically.

 

 

 

http://healthyeating.sfgate.com/results-critically-low-sodium-6200.html

Stress should be a 4 letter word

On By WendyIn Chronic Illness, stress4 Comments

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Stress is widely known to cause the chronically ill to get sicker, to have flares, to generally feel worse…  Stress is an ugly word that I hate to hear my doctors say. “This is being made worse because of stress.”, “You need to get your stress under control.”  I can’t tell you how many times I’ve heard this.

The amount of stress I’ve been under the last few months would make the healthiest person feel bad, for someone who is chronically ill, with both physical and mental illnesses this has been a very trying time.  I’m sure you are wondering, “What has been going on in Wendy’s life?”  Well let me tell ya!

This may not be in order, I’m just going to get it all out.  We moved, we had a friend move in with us, I was having vertigo a lot for a while, I’m constantly afraid I will have a vertigo attack, I’ve been having migraines daily for months, my father passed away, I went through all the stress building up to my father’s death, the stress of the funeral….I feel like it has been non-stop.

I’m wondering if my migraines are worse because of the stress?  My chronic daily headache now has a base line of a 4-5 where it used to be 2-3, on a 0 – 10 scale. The pain in my neck and upper back due to degenerative discs has greatly increased, I’m in physical therapy for that now.  (going to PT is another stress, as Stuart has to take time away from work to take me to my appointments, this time has to be made up, that’s hard on both of us; and some PT sessions seem to make things worse, that’s a stressor too.)  I can’t take pain relievers which causes a certain amount of stress too because I never have any relief. My tinnitus has been very loud.  Some days my balance is worse than usual.  My emotional state is not well.  I’ve been depressed. (yes I know I have reasons to be sad, but this is more than that).  My anxiety is very high.  I am extremely irritable (I’m shocked at how much Stuart and I have been arguing, and bickering, normally we rarely argue)  I’m restless, yet tired, excessively worried, feeling like I’m trembling inside, very sad, my appetite is out of control, I am extremely self-conscious, I have very little self-esteem and I keep beating myself up for things I have no control over.  I can’t relax; I can’t give myself a break; I’m not being kind to myself.  I’m just a mess.

I’ve been having a very rough time.  This is upsetting because I’m at the best place I’ve been with my vertigo than I’ve been in a couple of years.  I haven’t had a bad attack in almost 2 months.  This is surprising because it normally gets worse when I’m under a lot of stress.  However, It is often much better during the summer.  I know I would be feeling even worse if I was having vertigo as often as I normally do.  But I can’t stop having profound fear that it will get worse any moment.  I’m having a hard time enjoying this break because I’m so terrified I’ll have an attack at any moment.

I was trying to take better care of myself, but I have to admit in the last few weeks most of that has gone out of the window.

When we are under stress it is imperative that we practice self-care.

Things I plan to do to increase my self-care:

  • Be sure to see my therapist and be open and honest during appointments.
  • Give myself a break.  This is more easily said than done, but I need to really make a conscious effort to do so.  When I have negative thoughts or feelings I want to start being more gentle with myself.
  • Meditate more.
  • Take more baths.
  • Watch funnier TV shows and/or movies.
  • Read funny or inspirational books.
  • Cuddle with my hubby.
  • Cuddle with Max (the cat) and Kiki (the little dog).
  • Eat healthier.
  • Do as much as my health will allow that makes me happy.
  • Be creative.
  • Stay in touch with those who love and nurture me.
  • Try to get outside more.
  • Keep up a gratitude list every day.
  • Laugh
  • Sing Silly Songs
  • Dance
  • Give my body 10 minutes of mindful attention.
  • Take a nap.
  • Take Deep Breaths
  • Get Positive Feedback (ask 3 friends what they love about me)
  • Write out my thoughts (for 15 minutes free write what ever I’m feeling, I can tear it up after, just get it out.)
  • Drink water (I’ve been drinking soda recently, something I haven’t done in years)

 

How do you take care of yourself?  Any self-care suggestions?  I’d love to hear them!

 

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Stress and 12 Ways To Cope With It.

On By WendyIn Chronic Illness, stress15 Comments

Recently I’ve been feeling pretty sick.  Having vertigo regularly and having migraines daily again is taking a toll on me.

The stress in my life has increased significantly and “chronic stress has a significant effect on the immune system that ultimately manifest an illness.” (Mohd. Razali Salleh 2008)  I don’t know how many doctors have told me that I need to control my stress.  Unfortunately, that is much easier said than done.

Stress comes in all shapes and sizes.  We have major things that cause stress, like someone close to us dying, or being diagnosed with a chronic illness. We have little things that cause stress, like a traffic jam or being late for an appointment.  We even have stress from good things in our life, like moving into a nicer home, or having a baby.  Every moment of stress can cause havoc on our health.  Chronic stress is caused more by the big things, the things that don’t just go away, but the little things can build up and be “the straw the broke the camels back”.

In mid April we moved from this a tiny little duplex that I felt very uncomfortable in to a larger house with a beautiful backyard.  This relieved one huge bad stressor on me and created a new happy stressor, but a stressor none the less.  It has been 2 months since we’ve been in this house and we still aren’t settled in, this causes me a lot of stress because I know if I was not sick, this would not be the case.

At the beginning of May we had a friend move in.  Someone who is going to be helping us out and we are hopefully going to be helping him out.  No matter how smoothly this move-in was, no matter how much we all love each other, no matter how good the situation will be, it has caused stress.  Suddenly I have someone else in my home and I’m not used to that.  I’m not used to people seeing me sick.  I haven’t been around many people at all for the past few years and suddenly there is someone living with me.  I’m not used to sharing my space with anyone other than Stuart.  This has caused a huge amount of stress.  It’s unintentional, I didn’t expect it, and I’m sure it will ease, but right now it’s there.

My father’s health is declining.  He lives over 3 hours from me.  I can’t just jump in the car and go see him. I can’t spend this precious time with him.  I can’t help care for him.  I can’t help my sister.  About the only thing I can do is give my sister encouragement.  I can text her and listen.  That isn’t real help and It breaks my heart.  The guilt is overwhelming, so is the stress.  This is the first time since I stopped driving that is has caused me such anguish.  I know even if I could drive I’m not well enough to care for someone who is ill, and I’m feeling guilty about that too.  Guilt is a huge stressor.

Of course, the fact that I’ve been sicker is a major stressor too.  A huge Catch-22 huh?

A little fairy, something I created. Creating is a great way to relieve stress.
A little fairy, something I created. Creating is a great way to relieve stress.

What can we do to reduce the effects of stress?  Well there are a few things, many of which are hard to remember when you are in the throws of being sick.  However, there are things I try to do, they include:

  • Meditate:  I usually use guided meditations, there are a lot of apps out there to help you with this, and you can find many of YouTube.  There are different guided meditations that help with different things.  I often do the body scan meditation, I’m so used to this one I can do it without the aid of a guide.  You simply focus on a part of your body, I start with my feet, and move on throughout the body paying attention to what each part is saying.  Don’t judge, and don’t worry about doing anything, relax into it if you can, but mainly just note it and move on.  For each part really pay attention.  For example, right now as I focus on my feet I notice my toes are a bit chilly, my heals are pressing into the floor, an old ankle injury is causing a little bit of pain, but nothing that should concern me; I’ll stay here for just a bit to see if there is anything more I need to pay attention to, then I’ll move on to my calves.  For some people this can be uncomfortable, getting in touch with their body can bring back repressed memories, be aware of this and take care of yourself accordingly.   This is just one example of a meditation I often do, there are many, feel free to practice this any way you feel comfortable.
  • Deep Breathing:  This is pretty simple but can be a great stress reliever.  Simply stop and focus on your breathing.  Put your hand on your belly and feel the breath fill up your abdomen and then go out.  Do this for about 5 minutes, or just take a few deep breaths when you need and carry on.  I find this very cleansing.
  • Some me time:  Find time just for yourself.  I take a hot bath with Epsom salts and sometimes candles.  It’s a me time.  Some people are not comfortable with this, if it isn’t for you, don’t do it.  See if you can find something that is just for you that you consider self care.  Paint your nails, put lotion on your feet, have a nice cup of tea …. these are all things that I like to do, find your special thing.
  • Stay in the moment:  When we are under a lot of stress it’s easy to build things up in your mind about how bad things are going to continue to be.  Stop and try to focus on this moment.  The future hasn’t been written yet, things will never stay the same.  When I’m having a vertigo attack I try hard to stay in that moment.  It’s a rough moment sometimes, but I know it will end.  I can deal with anything for a moment.  I wrote a whole post about that, Living In This Moment.
  • Bitch:  I don’t mean to wallow in your misfortune, but reach out to someone you trust and just let it all out.  Maybe get some advice.  I hold things in way too much so, I feel better when I talk to a friend and just let it go.  I have a good friend who never judges and gives great advice, sometimes I even take it.  🙂
  • Exercise:  This one is really tough for some of us.  It’s very tough for me.  However, the release of endorphins when you exercise will make you feel better.  I try to do stretches, and walk as much as I can.  Don’t let it stress you out if you can’t do this, I often can’t, just do what you can, doing something good for ourselves makes us feel better.
  • Eat Well:  Again, doing something good for ourselves makes us feel better.  When I’m under a lot of stress I often binge eat.  I crave sweets and I’m literally hungry way more often…like all the time.  I’m trying hard to munch on things that are good for me.  When I do this I feel better about myself.  When I give in and eat a lot of junk, I get even more stressed out.
  • Laugh:  How can you feel stress when you are laughing?  Watch a funny movie.  Read a funny book.  Play.  I play with my dog, she always makes me laugh.  My husband often makes me laugh too.  Laughter has really saved me a number of times.  I have been spiraling into a deep depression, but finding things to laugh about helps.
  • Listen to Music:  I can’t do this one because a lot of music sounds weird to me since I got my cochlear implants, however music can soothe your soul.  Just lay back and turn on some tunes.  Listen to relaxing tunes to calm down, peppy tunes to help you get moving, happy tunes to make you smile.  Music can melt stress away.  (My husband and I often sing out loud and make up silly songs, this makes me laugh.  I’ll also hum to calm myself.  So even though I can’t hear music it is a big part of my life.)
  • Create:  Write, paint, draw, color….do anything that gets your creative juices flowing.  When you get really involved in creating it can produce the same positive effects that meditation can.
  • Have sex:  Perhaps a little Too Munch Information here, but I feel it’s worth a mention. Having sex, talk about an endorphin release!  Not only does sex release endorphins it makes us feel close and secure in our relationship.  The feelings that are released during sex can be a great stress reliever.  (masturbating can be very releasing too)
  • Be Grateful:  When we stop and take note of the things we are grateful for instead of focusing on the things that are going wrong it can be very cathartic.  Sometimes you may feel you have nothing to be grateful for, but we all do.  Chances are if you are reading this you don’t live in a war-torn country, you have a safe place to live, you have enough food to eat, clean running water….  We take so many things for granted, but we have so many things to be grateful for, take a moment, step back, and think about things you are grateful for.  I try to list 3 good things every day.  3 things I’m grateful for.  You may find this practice very helpful too.

How do you handle stress?  Any suggestions for me and others?

I admit when I’m under a lot of stress I have a hard time implementing my stress relieving techniques, but just sitting here listing them makes me realize that I have ways to help myself and it has given me the incentive to get busy and try more of them.

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