mini update…it’s all about me

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

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

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

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

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

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

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

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

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

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

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

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

 

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Some things are hard to talk about. Pocrescophobia

I’ve been struggling with something for a while and I’m not actually sure I feel comfortable talking about it, but there may be someone else out there struggling with the same thing who needs to know they aren’t alone.   I have an intense fear of gaining weight.

*****this post talks about eating disorders, this may be a trigger for some of you, please take care of yourself and read (or not) accordingly*********

As many of you may know, I lost 45 pounds in 2017.  This is something I have been trying to do for a long time.  I gained a lot of weight when I first got sick, on top of losing my independence, suddenly my body no longer felt like mine.  I weighed 225 pounds at my heaviest, and I didn’t recognize myself.  (I’m barely 5’5″ tall)  A few years ago I found out that I have Fructose Malabsorption and went on the appropriate diet to help with that, and at that time I lost 45 pounds, and kept it off.  However, I was not happy with my weight.  I was still overweight and it ate at my self esteem.  I tried and tried to lose weight over the last few years, but it just didn’t come off.  I had my yearly physical last year on December 30th, and at that time I weighed 182 pounds.  I was determined to lose weight, but I really wasn’t sure I could do it, and I was ashamed that I hadn’t been able to do it before.  Then I was put on a medication for my migraines that reduced my appetite.  Suddenly I was able eat much less and not feel hungry.  (Normally I feel hungry often.)  I lost weight, it came off slowly, but it steadily came off.  By the time I had my yearly physical last month I weighed 140 pounds.  (140 lbs at the doctor’s office, at home I weighed 135lbs)  The medication stopped curbing my appetite, now I’m fighting hard not to gain all that weight back.  I was able to bake for the holidays this year for the first time in many years, but I didn’t just bake, I ate, and I have been terrified that I’m going to gain….and gain…and gain, yet I can’t seem to stop eating.  I’ve gained about 5 pounds.  I know how quickly those 5 pounds could turn into 80+ pounds, and I’m desperate to not let that happen.  So many people will say that 5 pounds is nothing when you gain weight, they tell you not to worry about it, it’s really not that much, but those same people will tell you how great it is when you lose 5 pounds, how that’s a lot of weight to loose….  How can both of these be true?

When I lost the weight this year I found myself in love with my body for the first time since I can remember, if I ever felt that way at all.  I accepted that this body was not as I wished it would be.  Let’s face it, a 54 year old’s skin doesn’t really shrink back when you lose weight, but I was happy with what I saw, I loved all of me, saggy skin, cellulite, and all.  However, even though I felt that way, I was still terrified of gaining the weight back.  At one point, I went to the grocery store and started to buy some gluten free flat bread to make a pizza with, when I saw the amount of calories it had per serving I broke down in tears.  I was paralyzed with fear.  I simply stood there and cried.

Now, I see myself as fat.  I can see that I’ve lost weight, but I also see where I’ve gained some, and how much more I need to lose.  (10 pounds seems to be as hard to lose as 50)  I see photos of me and I think I look pretty good, then I look in the mirror and know that isn’t true; it takes a lot of effort to look good for the photos, on a day to day basis, I don’t look like that.  I look down at my body when I’m sitting in the living room and I’m appalled by the rolls of fat on my stomach, the bulges I feel under my arms, (back fat is not attractive), and the drooping of my breast.

I feel better since I’ve lost the weight.  I can get up from the floor easily.  I can walk further than before.  I go out with more confidence (most days).  I love wearing smaller sizes.  I think I look good…..sometimes.  Other times…well I covered that haven’t I?

I’m scared.  I’m terrified of gaining weight.  This is an intense fear, yet I can’t seem to stop eating.  I’m hungry all the time.  I’ve had a love/hate relationship with food for a very long time, my whole life really, I don’t want to go into detail about my past, but I need to let you know this isn’t the first time I’ve struggled.  Now it is even more confusing.  My weight seems to always be in a state of flux.  Since I was able to keep most of the 45 pounds I lost, I was encouraged that I would be able to this time, I’m afraid that isn’t the case.  I’m afraid I will need to track every thing I eat to make sure I don’t over eat or under eat.  I’m afraid I’ll need to exercise as much as possible in order to keep the weight off, but that is physically impossible because of my health, and I hate myself because of it.  I’m afraid I’ll fail and the weight will come back.

I’ve been trying hard to not eat as much, and to eat nutritionally dense foods; this hasn’t happened, instead I’ve been going overboard on sweets and cereal, and I beat myself up over it.  The guilt and fear is so great that I have tried many times to make myself throw up. (I can put my finger all the way down my throat and not throw up.)  If I could just get it out when I eat too much, I know I would feel better, I would be back in control.  No, it wouldn’t take away the guilt (I’m sure it would cause more guilt), but the fear is stronger than the guilt.  I’ve exercised to the point of absolute exhaustion (not regularly).  I have taken laxatives when I feel I’ve over eaten (not often, but I have).  I suffer from chronic constipation and get obsessed with how much that makes me weigh (how much extra weight is in me), laxatives help.  I try hard not to have them in the house, so I won’t abuse them.  I’ve actually been happy when I’ve had intestinal distress, because it’s a sure way to lose weight.  I’ve wanted surgery to make me look better.  These actions and thoughts scare me.

I will work on these things.  I may go back into therapy, but first I am going to try to deal with it on my own.  As many of you know I can’t drive because of the sudden attacks of vertigo I have, this makes it very difficult to get to therapy sessions.  Stuart has to juggle his work schedule to drive me places so we try to keep my appointments to one a week, two at the most; if I have therapy every week how can I go to any other appointments?  I just want to handle this by myself if possible.

I don’t think I have a full fledged eating disorder, yet.  I do not avoid meals.  I eat when I’m hungry, even if I feel I shouldn’t be hungry.  I have not been tracking every calorie I put in my mouth. However, I do plan to, to make sure I’m not over or under eating, and I will admit, to loose a few pounds.  I’m not avoiding foods, I do plan to cut sugar out of my diet for a while, but that’s not a bad thing, right?).  I normally do not eat so much that others would find it unusual. (however, I feel it is)  I do not purge, but I do admit, sometimes I would if I could.  I have a lot of fears and I can see that my actions have been changing because of these fears.

I have Pocrescophobia (the fear of gaining weight); I know this fear could lead to serious health issues, I know it is causing extreme anxiety for me, and I know it is hurting the people who care about me.  I will get a handle on it, if I can’t do it alone, I will start seeing a therapist and talk to my doctor.  (I promise)  Right now, I’m simply trying to be open and honest about this.  I’m asking you to not judge, or worry about me, I simply ask you to be witness to my fear and support me while I deal with this.

I do wonder how many people who have a chronic illness struggle with these feelings.

For further information, or help, I’ve listed a few organizations that deal with eating disorders:

 

Panxiety

Today I’d like to introduce Lorraine of My Frilly Freudian Slip.  Lorraine is a good friend of mine and the author of beautiful poetry and prose.  You will find her writings at myfrillyfreudianslip.wordpress.com.

Lorraine is fighting Bipolar I and severe anxiety.  They can’t find medications that work for her.  Following you will read a first hand account of what it is like to live with “Panxiety”.

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photo by Lorraine of My Frilly Freudian Slip

“Pounding heart. Constricted throat. Knotted stomach. Dread washes over me. A panxiety attack.

Coming, unbidden, from some where inside my mind; spilling into my consciousness and flooding my body with anxiousness.

Breathe in through nose to count of ten, fill lungs, feel belly lift. Hold. Breath out slowly to ten.

Drift – visualize place of calm. Walking on beach, tide tickling toes. Finding beach treasures: sea glass, sand dollar. Smell sea tang. Feel breeze against skin.

But the panxiety is stronger – can’t focus; can’t concentrate. Pace. Half finished tasks lay scattered around the house – stopped in mid-flow. Forgotten. Pace.

Distract. Words on page, coloured pencil on paper. But, hands and mind shake.”

Daily, I deal with panxiety – a panicky anxiety attack – lasting minutes or hours. Sometimes the dread follows, flows all day. Few solutions to the foreboding; apprehension. Becomes so hard to concentrate that writing, my usual distraction from mental and physical pain, is almost impossible. I lose words; sentences fly off into the ether.

There are times I can force myself to lay still. To tell myself one of my “head stories.” Perhaps to drift off to sleep for awhile. This doesn’t mean I stay under long, nor that I wake calm. But when I can “nap,” my emotional and physical self gets a break from the relentless panxiety.

I have to confess turning to medication more than meditation when the attacks are furious and frequent. Always haunted by anxiety, these spells have increased in number and severity. Linked to a series of traumas, mental collapse and going untreated for several years afterwards.

I am on the bipolar 2 spectrum with chronic depression, rapid cycling, and bouts of hypo-mania manifesting in over indulgence and obsession. My bipolar isn’t responding well to medication; I am mostly teetering on the edge of instability, often falling all the way in.

Depression is my background music. Even when the volume is turned up, I can become agitated and anxious. As my depression can not be treated with anti-depressants (they don’t work), it is hard to level my mood. These swings are often accompanied by panxiety.

My anxiety has never been fully addressed. The medication I am given is not in a sufficient dose to stop the attack completely. And, I take nothing that addresses it on a daily, 24 hours basis. I seek to gain control of these attacks by other means than Ativan or Klonopin. However, often panxiety, like depression, wins. Doesn’t mean I stop fighting – I just have to do battle harder and stronger the next time.

Seeing a therapist has given me an outlet; a safe space to talk about how I feel. A person who helps me explore my mental health issues including honouring and acknowledging the traumas underlying the escalation in my panxiety attacks. Therapy can be the life-line that grounds me while I do battle. A reprieve to polish my armour.

Lorraine  myfrillyfreudianslip.wordpress.com

Mindfulness Monday – Anxiety

Bike

“If you want to conquer the anxiety of life,
live in the moment,
live in the breath.”

~Amit Ray

 

“Between stimulus and response there is a space.
In that space is our power to choose our response.
In our response lies our growth and our freedom.”

~ Victor Frankl

 

Note:  Severe anxiety takes a lot more than a couple of quotes to make it better.  These are just thoughts one can try to keep in mind.

All artwork on Picnic With Ants are created by Wendy Holcombe unless otherwise noted.

 

 

Meniere’s and Psychological Distress

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When I was first diagnosed with bilateral Ménière’s disease by my doctor at Duke he told me two things that will always stick with me, “Ménière’s is one of the worst disease you can have that won’t kill you.” and its “a disease of random punishment.”  He compared Ménière’s attacks to living in a war zone, you know that you will be under fire at some point you just don’t know when.

Having a disease that makes you feel as if you could be attacked at any moment causes a lot of psychological distress.  A study conducted by Dr Kirby and Professor Yardley at the University of South Hampton found that those with Ménière’s Disease have a much higher incidence of post traumatic stress syndrome (PTSD), health anxiety and intolerance of uncertainty to distress than non-sufferers.

Nearly one in eight people with Ménière’s were found to meet the criteria for full PTSD, compared to the general population where just one in sixty has PTSD. The high levels found in Ménière’s sufferers are comparable with those found among people who have suffered a stroke, heart attack or heart surgery.

I’ve been diagnosed with PTSD.  I’ve known this for a while but it has never been as apparent as it has been the past month.  For the past month I’ve had very little vertigo.  The vertigo I have had has been minor and only lasted for a very short period of time.  Most days I’ve been vertigo free, but I haven’t been able to enjoy these days.  I am constantly expecting an attack at any moment.  I’m on edge, jumpy, irritable, anxious, argumentative….  I try so hard to enjoy the good days I have and put the bad days in the past, but that doesn’t seem to be working recently.  I have been taking advantage of this good spell a little but I’m on guard all the time, waiting for the ax to fall.  Waiting for that next vertigo attack.  Sometimes I deal with this much better than other times.  Right now, I’m a nervous wreck.

I found a test on line that ask many of the same questions my doctor asked me to get my diagnosis.  If you feel you might have PTSD you might want to take this test and then take your findings to your doctor to discuss it.  PTSD Test

additional reading and helpful sites:

Stress should be a 4 letter word

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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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The Future is Scary, with a side of Hope.

It seems appropriate that I’m writing this on the eve of a new year, what better time to look toward the future?

For me, contemplating the future is more than a little scary…. let’s just say my anxiety about it has been more than I ever thought was possible.

After my illnesses changed my life, I learned about Mindfulness Based Stress Reduction (MBSR), it struck me how it has helped many people in many aspects of life, but mostly I was struck by how much it often helped people who are ill.  I had already learned of mindfulness during my studies in Buddhism, and while practicing yoga, but I admit I didn’t practice it regularly.

Over the last few years I’ve learned more and more about mindfulness, as I continued to studied Buddhism and MBSR, I’ve worked hard to live my life in the moment.  I don’t dwell in the past, (all of that is gone)…. I don’t worry about the future, (that hasn’t been written yet)…I try hard to live in this very moment, because that is all we truly have.

Yes, at times I still have moments when I get upset that I can’t do what I used to, and get upset about what might happen…but I don’t dwell on it.

Then we started making plans… how we are going to try to make things better for me….decisions about this unknown future, decisions that I have to make. Suddenly, I HAVE to look at the future. I HAVE to think about it.  And it really scares me.  Suddenly, I’m scared about being like thbe mindful of the futureis forever.  I thought I had accepted that and was okay with it.  Not that I was giving up, just that I accepted things if they didn’t change.  At least that’s what I thought, but actually, I thought I was going to be like this forever, I had come to terms with it, and now, that may change.  Now, I suddenly have options….plans.  I am having a very hard time not being anxious about the future.  I’m even thinking about things from the past. I keep thinking about all that I can’t do now, and how much my life has changed, and I keep wondering, could I get some of that back?  The main thing I know is that, I don’t want to lose myself in this quest to get better.  I don’t want to be afraid.  If I don’t get better, I need to know that’s not the end of the world.  I don’t want to start having to accept all of this all over again.

Each day I have begun to get more and more upset about things I simply can’t do.  As usual, most days all I can do is go from the bed to the chair in the living room.  But I tried hard not to let this get to me before.  I tried hard to make the most out of every moment…no matter what.  I’m trying now….but I am not doing as well as I have been.  Then I hear the voice in my head….Be Gentle With Yourself.  and I Breathe.  I am doing the best I can.  Yes, I’m a bit overwhelmed right now.  Everything is changing, all of a sudden, it’s going to take me a minute to keep up with it….deep breath….and I must remember, it still has to happen one moment at a time.

Okay, let’s move on from this and let’s talk about what the plan for my future is right now.

I was going to write a post right after my visit with the new ear doctor here in town, but I decided to wait until after the tests and the results.  I was supposed to get those yesterday, but I had to reschedule my appointment,  guess who was too sick to go?  Surprised?  I’m not….I have cancelled so many appointments because of vertigo, you just can’t imagine.

So, I’ll give you a break down of what is going on as of now…..

I saw the new ear doctor here.  So far he seems pretty good, I was impressed with his knowledge about Meniere’s, and he is very willing to work with the doctor from John Hopkins.  He suggested I start taking a low dose of Valium twice a day to try to keep my vestibular system calm.  He wants me to keep track of how much Sodium I’m eating.  (Okay, I laughed at that.  I know I don’t intake much sodium but since I haven’t been keeping a record he was not convinced.  I have been eating a low sodium diet for years, I know how much sodium is in almost everything, I don’t eat processed foods, and if I eat out I order everything without seasoning….yes I know that is boring, but it is safe with all of my food issues.  So I tracked my food since I saw him, I admit I was curious too, the results?  I normally consume just under 1000mg a day, I haven’t been over 15o0mg in any given day.  They say a low sodium diet is 2000mg a day.  I don’t think I have a problem there.)   I’m starting vestibular therapy on January 12th, we’re going to start training my eyes and body to balance without my ears.  I am to continue working with my headache specialist to get my migraines under control.  We will talk more about killing off the balance center after doing all of this and seeing if it helps.   Also after seeing the results of the vestibular testing I went through, we want to see if one of my ears is close to being dead already, if so we may go ahead and kill that one off, it may be causing much more trouble than the other.

(just let me say, I’ve been through these tests before and it wasn’t so very bad the first time, this time, it was absolute torture.  I cried.  I am not that kind of person.  If my husband hadn’t been back there with me, I don’t know how I would have gotten through it.  The person giving the tests told my husband she thought I was suppressing, because some things that should bother everyone I was not showing too much of a response on.  I thought that was strange.  I didn’t feel like I was suppressing, but after I’ve been going through this for so long, I’m sure I automatically try to not have vertigo when it is coming on.  I didn’t throw up, I almost did, I had cramps like dry heaves were coming, but no vomit.  Yay!  it really takes a lot to make me throw up now.  I rarely throw up during an attack now.  I get really nauseous, but I rarely throw up.  I always thought it was the meds.  Heck it’s already ruined my teeth and caused burns in my esophagus, I’m very happy it stopped.  Anyway….I’m very interested to find out the results of the tests, and upset I didn’t get to go yesterday.)

He does think my Meniere’s is definitely autoimmune.  Not that I want an autoimmune disease, but it does explain a lot.  Most of my doctors have felt I have symptoms that lead to one, but haven’t been able to put their finger on it.  I just have so much going on, and everything gets worse with stress, and gets better with steroids.  I often run a fever and no one can find a reason.  I have a marker for an auto-immune disease, but the one I have a marker for I do not test positive for….however, that is a red flag that I could have another.  They believe they simply do not have a test for the autoimmune disease I have, or I don’t test positive for it.  Like a friend of mine, has rheumatoid arthritis, but he always tests negative for it.  It is visible on all scans and he responds to treatment, but the test for it comes back negative.  So, in other words, we can’t prove it, but it is thought that it is an autoimmune disease, at least in my case.

So, there is the plan for now.  I don’t know what will happen.  How it will change.  Or anything right now.

I feel that there will be a lot of change around the corner.

The future is scary, but it holds promise, and hope…..something I haven’t had in a long time.