Tag: Fear

I’m afraid.

On By WendyIn Chronic Illness10 Comments

I’m writing this on my phone.

It’s late.


I should be asleep, or at least trying to sleep.


Today has been just a bad day,
an emotionally turbulent day.


I’m afraid to go to sleep.


Reading hasn’t been helping.


Are you ever afraid to sleep?


I’m afraid he’ll be back.
That security guard looming over my bed,
saying things I can’t understand.
His face contorted into hatred.
It was obvious he didn’t believe me when I said I’m deaf, but I couldn’t hear him.
I found out later he said “You we’re just talking with them!”


Does me talking mean I understand their words?
Does me saying “I Do Not Understand” , mean I can hear?
I could see their actions, I commented on them, does that mean I heard them?

No!
No it does not!

For a while after I got home I had nightmares.
I was afraid to sleep.
Today my emotions were in a bad place.
I feel useless.


A vestibular migraine looming over me for a month, makes things worse.


I’m causing more issues for Stuart.


I’m overwhelmed with guilt.
I’m hurt
I’m sad.


I’ve been pushing it down, but tonight it’s back
I’m afraid


Are you ever afraid to sleep?

I’m 59 years old and I hurt all the time
For 30 days I’ve had vertigo every day.
I’m losing muscle tone
My thighs seem weak.
If I’m like this at 59, how will I be at 69?
79?
Do I even want to know?

Each night I make plans for the next day, it all rarely happens.


I’m tired.


My quality of life stinks.
It has for a very long time.


I’m so very grateful for my amazing support
I’m privileged.
So why am I so sad?
So mad!?
So scared… all the time.

Are you ever afraid your life will never get better?


Are you ever afraid?

Do I deserve to be treated the way I was at the hospital?


I’m afraid.


Please don’t say I need to do more about this.
I don’t have the energy, and I don’t know their names.
An official complaint has been made.
My only goal is to help prevent this happening to someone else.

No one deserves it!


Even me.

I’m still afraid.

Mindfulness Monday – Thich Nhat Hanh On Fear

On By WendyIn Chronic Illness, Mindfulness, Quotes5 Comments

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

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

 

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

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

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

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

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

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

 

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

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

 

yeah, I didn’t get that done…

On By WendyIn Chronic Illness9 Comments

You may recall my post back in December where I talked about my fear of gaining weight.  I felt like I was handling that better, and things were going well.  I was trying to focus on nutrition and not on weight.  I have been trying to eat more mindfully, more intentionally (appreciating the food, accepting it’s nourishment, paying attention to my hunger cues….)

I say try on all of these because I haven’t been doing a very good job recently.

I promised I’d write a post about mindful eating last week, and well….. yeah, I didn’t get that done.  I started getting very obsessed with food this week.

The fight with food is strong in this one (ha, I sound like Obi Wan..or Yoda).

I was doing well when the scale was staying the same, and even went down a little.  Yes I still want to lose that last 10 pounds.  I think I’m more anxious about my weight because  I still have not gotten to the weight I want to be at, if I can get there I think I can keep it off, but why will these last few pounds not go away?  yeah, I know there’s more to it than that, but it’s very hard to voice what I’m feeling.

I know it’s not healthy to be so obsessed with my weight, but I also feel like if I’m not very diligent I will end up back where I was.  I really don’t want that.  I feel better about myself now (no, really I do!!).  I’m more confident when I meet people.  I have more stamina…..  I know how bad I feel when I’m bigger, both physically and mentally, and this is better.  Even though I’m obsessing about weight gain, it’s better than beating myself up over being fat all the time.  Hiding my body, not wanting to wear clothes that show skin, not wanting to be intimate, avoiding looking at myself in the mirror, cringing when I’d catch sight of myself in a store window…these are not healthy things.  My fear of gaining weight is part of that.  I don’t want to feel so out of control any more.

I am seeing a therapist about this.  After a friend shared that she had been seeing a therapist through an online counseling site, and she had a very positive experience.  With all the barriers I have trying to go to see a therapist face to face, I decided to give it a try.  I’m so glad I did.

I’ve been “seeing” my new therapist for a couple of weeks now, and by golly this woman has earned her money!  I was not in a good frame of mind this past week.  Food issues, anger, racing thoughts, insomnia…..mania.  Yep, I had a manic swing.  It wasn’t as strong as it has been, and I’m pretty proud of how I handled things, but it I was not my normal self.  I’m sure my new therapist didn’t think I was handling things very well when I bombarded her with emails for 2 days, but I just had a live chat session with her and it’s all good.   (by bombarding her, I mean that I wrote her 5 emails within about 3 hours, all of which were looooong.  If she weren’t my therapist I’d be embarrassed.  Okay, I’m still embarrassed)

I’m going to close for now.  I just wanted you all to know that, I’m not dead, I will eventually write a post about eating mindfully, and I am seeing someone about these issues of mine.

 

Have you ever thought about online counseling?

Would you try it, or not?  why?

I’ll share more of my experience soon…..no, really, I promise I will.

 

Some things are hard to talk about. Pocrescophobia

On By WendyIn anxiety, Chronic Illness, Eating disorders, Invisable Illness19 Comments

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:

 

#HAWMC Day 28 – 5 Challenges & 5 Victories

On By WendyIn Chronic Illness11 Comments

Today is Day 28 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

5 Challenges & 5 Small Victories.
Make a list of the 5 most difficult parts of your health focus.
Make another top 5 list for the little, good things (small victories) that keep you going.

5 Challenges – 5 most difficult parts of my health focus:

fear

  1. FEAR- My number one challenge is Fear.  I’m afraid of the vertigo.  Of course I’m afraid when I’m having it, but I’m constantly afraid I will have it even when I’m not.  I’m afraid of the pain, the migraine pain, the arthritis pain, all of the pain.  I’m afraid the pain will get worse and I won’t have any way to manage it.  I’m working through some stuff in my past and I’m afraid of what I’ll find out.  I’m afraid of more than I like to admit, but I’m working hard to be less afraid.
  2. Finding Doctors – I’ve had a difficult time finding doctors that treat Meniere’s Disease.  Even if they say they do, they often have little knowledge of the disease.  It’s also difficult to find a doctor who knows a lot about migraines.  It has been difficult to find good doctors to treat me.  In each field I’ve felt I’ve found a good doctor, only to be hit with the “I can’t do anything else” line soon.  It is a definite challenge to find a good doctor.
  3. Freedom taken away – Isolation, is a big challenge.  Since I can’t drive, I have to depend on my husband to get me out of the house, this is a difficult thing sometimes.  He works hard and when he is at home sometimes he has things to do here, or he just wants to relax, he doesn’t need to be taking me out all the time.  Plus I have to get over my fear of having vertigo in public before I can go out at all.   My freedom isn’t just taken away because I can’t go out, it’s also taken away at home.  Because of my illness doing certain things are not only difficult, they can be dangerous.  I can no longer cook because it’s dangerous.  I can’t take a bath or shower by myself, because it’s too dangerous.  It’s very hard for me to do any housework, sometimes because of the danger, sometimes because of the fatigue.
  4. Friends – It is a challenge to keep friends, and to make new friends.  Many of the friends I had before I became ill are not in my life as much now.  (various reasons, but let’s face it, I’m a different person.)  Making new friends is a huge challenge.  (I wrote a post about this, Making Friends?.
  5. Food – Food has been a challenge for a long time.  I have had GI (Gastrointestinal) issues for as long as I can remember.  Then I found out that I have Fructose Malabsorption, IBS, and a wheat allergy.  I have a specific diet I must follow so I won’t get sick.  This makes it hard for me to eat out, or to travel.  It’s hard to explain to people, “oh, I’m sorry I can’t eat that lovely meal you prepared”  It used to be hard to explain why I can’t eat wheat, now it’s really hard explaining why I can’t eat onions, apples, and all kinds of things.

5 small victories – list of 5 little, good things that keep you going.

wedding-love

  1. Successful marriage – This isn’t a small thing, this is a HUGE thing, but it’s what helps keep me going.  My husband and I both agree when we think about it we don’t feel that we work hard on our marriage, it’s just something that comes natural, but that isn’t exactly true.  We do work hard, it’s just something we want to do, so it doesn’t seem like work.  When I first started losing my independence it was very hard on our relationship.  I shut him out and he didn’t know how to talk to me.  We decided to see a therapist.  It was there that we learned to communicate again, and we both have a better understanding of how to deal with my illnesses.  If I could give one bit of advice to any couple going through one partner becoming ill, it would be to get a therapist. It might just make your marriage better.  I know mine is.
  2. Days I can deal with vertigo alone – this is a big victory for me.  When I start to have vertigo I panic because I never know how bad it will be.  See number 1 under challenges, and you will know, I’m afraid!  So going through a vertigo attack without help is a huge victory for me.  I’ve done it a few times, where I’ll have vertigo when hubby is at work and I don’t callv him home.  This doesn’t happen often, so this is a small victory, but it’s a big victory really, every time it happens.
  3. Making new friends – I’ve made many new friends on line.  I have a hard time meeting new people in person, but I’ve found that I can meet some wonderful people on line.  I’ve made some wonderful friends through my blog.  I have one friend that I met through my blog about 7 years ago now, our friendship has transcended the blogosphere.  We email, text, and send packages to each other.  We have called each other, but I can’t really talk on the phone.  One day I hope to meet her.  I think this is a pretty big victory, to go from losing friends to gaining such a deep friendship with someone I’ve never met in person.
  4. Getting out of the house – There are days I can fight through the fear and get out of the house with minimal distress.  When I’m having a good day we can go out and do normal things.  Those times are small victories, they get me through until the next time.  They remind me that I can do it.
  5. Diet – Eating my restrictive diet has made it so I can eat with minimal to no GI distress.  It may be challenging to eat this diet, but I think it’s a small victory, actually a big victory, to be able to eat without GI distress.

 

I wrote a similar post to this one here.

I’m participating in WEGO’s #HAWMC, if you’d like to read more posts from today please search for #HAWMC and check out WEGO’s Facebook page.  Don’t forget to Like Picnic With Ant’s Facebook Page too.  🙂

If you would like to share your story on Picnic with Ants, contact me through the contact form on my About Me – Contact Me Page.

On my mind…

On By WendyIn Chronic Illness, Disability15 Comments

me pop and terry2
Left – Terry, my sister, Middle – My Pop, Right – Wendy, me

I don’t talk about my family often, other than hubby and the furry babies.  But there is something on my mind, something that may explain part of sadness.

My father had liver cancer in 2013, he went through treatment (chemoembolization) and they got it.  It was a much easier way to treat cancer than anything I’ve ever seen.  He has been doing well since then….

Until his check up in December, well even then they didn’t think anything was seriously wrong.  When he had his initial cancer he had a large tumor that they got rid of, and he had a tiny little tumor that they left alone, but they have watched.  It hadn’t grown at all then at his December check up, it was an itsy bitsy bit bigger, so they decided to go in and do Radiofrequency ablation (RFA) and get rid of it.  They did this the near the end of January.  During that procedure the doctor found more 2 tumors.

This was supposed to be an in and out no big deal procedure, but it took my father a while to recover from it.  Last Monday he had the chemoembolization again on the remaining tumors, this procedure is less hard on him.  Now this coming Monday he will have RFA again on both of the tumors.

My father is 82 years old.  This is really hard on him.  It’s also really hard on my sister.  She is taking care of him.  She was taking care of him after his first surgery when I was put in the hospital for having seizures.  She was so worried about me she got my uncle to come stay with my father and came to help me, then she turned around and went right back to care for my father again.  For over a month now she has had no life of her own, she has only been taking care of others, and I don’t know how much longer she will have to do this.  She is normally very involved in her grandchildren’s lives, I know this has to be hard on all of them.

I haven’t been able to go see my father.

I can’t help either of them.

I can’t help but think….what if…

and I can’t help but feel worried, sad, and guilty.

 

When you have times when you can’t help others who you love, how do you handle it?

I shouldn’t feel guilty for being sick, but at times like this, I do.  Well, I feel guilty that my sister has to shoulder all of this on by herself.  I feel guilty that I can’t even be there to hold my father’s hand.  And I feel guilty that I felt better today than I have since I can remember.

After days of having vertigo constantly, yes I had 2 days of rotational vertigo that went on every single second, I woke up feeling amazing today.

I had a really good day…..it’s hard when I think about what my family is going through.

 

The Future is Scary, with a side of Hope.

On By WendyIn Chronic Illness, Invisable Illness, Meniere's Disease, Migraines12 Comments

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.

 

Don’t Let My Situation with Meniere’s Disease Depress You!!

On By WendyIn Chronic Illness, Cochlear Implant, Meniere's Disease23 Comments

I haven’t written in a long time because, I had someone with Meniere’s tell me they read my blog and found it very depressing.  This is something I have feared for a long time.  I’ve seriously considered stopping this blog because of this very reason.  I do not want people to read about me and think that this is their fate.

I wrote a lot about having Meniere’s Disease and what it was doing to me before I knew I had “MORE THAN MENIERE’S”.    Even then we knew my case was very atypical.  If you have Meniere’s Disease do not take the progression of my disease as a road map of what your life will look like.

This blog is a journal of my experiences.  I am far from a textbook case.  As my doctor has said…..I am different from any case he has seen.  (he works with a LOT of people with many Vestibular issues at Duke, especially Meniere’s…he is the head of the Vestibular Clinic)  He has told me that there is nothing else he can do for me.  It is recommended that I go to John Hopkins Vestibular Clinic.  They do a lot more research in vestibular disorders than Duke does.  Frankly, I haven’t found any other place that does more research in vestibular disorders than John Hopkins.

Most people with Meniere’s never go bilateral.  Those who do, most never lose their hearing.  For those who do, it normally takes a very long time.   And the very, few who get to that point normally have very little to no vertigo after that.  If they ever do it is very mild.

I’m very different.  When I went bilateral, I completely lost my hearing within 3 years, I now have cochlear implants.  I still have vertigo often.  Even with Cochlear Implants my hearing fluctuates a lot.  (by a lot, I mean many times a day…this is far from normal.  Some people with Meniere’s who have CI’s do have their hearing fluctuate if they have a vertigo attack, but not like I do.)  I will have times where I can go without severe bouts of vertigo for a while then I’ll have a month or so with attacks every day.  That is not normal for Meniere’s.  This is very atypical for this disease.  As my doctor said, I have more than Meniere’s.

I have tried to steer this blog to cover more of my chronic illnesses as a whole, and not focus on Meniere’s Disease.  It doesn’t seem to be working out that way.  My vertigo and hearing issues are a HUGE part of my life.  How do I not talk about them?

I do not want my blog to depress anyone…..I don’t want it to cause people to have less hope.  Meniere’s can be a very scary disease….I do not need to add to it.  I’ve always wanted to give people hope.  To let them know there is life beyond the disease.  That the disease is only a part of the patient’s life, it is not all of your life…it is not who you are.  Things are just different now.

Right now I really don’t know what I’m going to do with this blog.

If I change the focus, people will still see the past post and can see it as depressing, and disheartening.

I am thinking about making a static post that you have to see first when you come to my blog before going to other post, and then starting a new blog, that is much more positive, and not mention Meniere’s Disease as much.  I am afraid I may lose a lot of you.  I’ve changed blogs before, and I lost a lot of people.

Maybe I’ll just give it a try.  Or have 2 blogs for a while?

I just don’t know.

Right now.  This has really been on my mind and has me stuck.

Love and Peace to all of you!

wendy

I Didn’t Expect

On By WendyIn Avascular Necrosis, Chronic Illness, Hip Replacement, Pain, stress5 Comments

expectationI didn’t expect the depression I’m feeling….

I saw the signs, I have so much going on, there are so many outside reasons….but I’m struggling….this is why I’ve been away so long, why my blog has been suffering, why I simply haven’t.

Today, I’m going to write, I have too much to write about, I am overwhelmed by how much I have to write about, but I need to…..

I didn’t expect to have vertigo almost all day the day before surgery.

I didn’t expect to have vertigo in the waiting room right before surgery.

adapted from Teen Titans cartoon
adapted from Teen Titans cartoon

I didn’t expect the intense pain after my surgery.  During surgery the back injury that just got better was aggravated.  I was not just dealing with surgery pain, the pain I expected, I was dealing with the back pain and severe sciatic pain.  To make it worse, I couldn’t move to make the back and sciatic any better.  I was stuck, in so much pain.  We could not get this pain under control.  I have issues with pain medication.  Everything makes me hypersensitive, I feel like things are on me, it makes me itchy.  So I was only prescribed Tylenol and Tramadol.  This didn’t do it.  They tried to put me on my side to help, this caused me so much pain I swear I wasn’t even in the room it was just pain.  Luckily, it didn’t last long.  I decided I’d rather itch.  They tried Hydrocodone.  nothing.  I don’t know what all was tried.  at 2am they tried Toradol, this is a NSAID given by IV or injection.  I’ve had it for my migraines before.  This finally worked.  Probably in conjunction with everything else.  I finally fell asleep.  Only to be awoken at 4am to have my blood drawn.  Then at 6am for something and at 7am because shifts changed….it was an exhausting.  But I have to say, the night nurse who was trying to help me was absolutely wonderful, I couldn’t have asked for better care.

I didn’t expect to have low blood pressure, a magnesium deficiency, and have to stay another night.

I did get out of bed the first day and walk a little, I was told I did great.  (the intense pain hadn’t started yet)  I had my morning Physical Therapy on the second day and did well, even though I was a little dizzy.  I didn’t expect to have a vertigo that afternoon.  During my vertigo attack I had 3 different people come to work with me, including my Physical Therapist.  No afternoon PT, no going home.  They also had to make sure my pain was under control before I went home.  It was better that night…but I had to sleep in a recliner, glad we bought one for me the right before I had my surgery.  (ugly thing)  I didn’t expect to HAVE to sleep in a chair for many nights after I got home.  I didn’t expect to cry from the pain so much, after my surgery.

I didn’t expect my sister to come and help.  I am very grateful.  I didn’t expect it to be so hard for Stuart to stand back and allow someone to help.  He said he’s just used to doing it, it’s hard to ask someone else to do things.  Yep, I know that feeling.  It’s very hard to ask others to do things.  Especially, for me to ask for the little things.  It’s hard to ask for things like something to drink, or a snack, to reach something for me, to get me a blanket if I’m cold….ect.  Yep, I’m having a hard time asking for things too.  I’ll ask for someone to go to the store, or do some laundry, things like that…..but it’s the little things that get me.  It makes me feel so helpless.  Eh…I guess I am.   (I feel pretty weird having anyone other than Stuart do private things for me too…that is one of the hardest things I’ve had to deal with…one of the hardest)

I didn’t expect to have vertigo every day since my surgery.

I didn’t expect for Stuart to have to take off a second week from work.  (I think he got in a little bit of work the second week…but not much.)

-Rachel Wolchin thegoodvibe.co

I didn’t expect…..

I didn’t expect to have a death in the family two days after my surgery.  It was my extended family by marriage (my cousin’s daughter’s husband), I didn’t know him personally, but the circumstances of his death were hard….so very sad.  He was young, in his late thirties.  He was EMT on his way to work and pulled off and parked at a gas station, they found him slumped across the steering wheel dead.  The autopsy has been inconclusive.  There are still test out, but they don’t expect to find anything.  They will probably have no idea why he died.   They also found out a lot about him that his wife had no idea about, it is very, very sad.  It also makes you think…..and think….

I didn’t expect for one of my father’s friends to die the next day.  I knew him growing up.  He worked with my father, they used to Barbeque (or barbecue in some parts) together.  When I say Barbeque, I mean Southern Barbeque; a huge hog in a pit, slow roasted all night long….oh my it is good.  We used to have picnics and things over at his farm.  He let me touch my first cow, it was much softer than I thought it would be.  He was 12 years younger than my father.  As you get older you see more and more friends die, I wonder if my father is having a hard time with this?  I’ve noticed he goes to a lot of funerals.  That’s a subject that would be hard for me to broach with him.

I didn’t expect my friend Laurie from Hibernationnow’s Blog to die on April, 21st.  She caught the flu in February and that just snowballed into more and more, she just got sicker and finally her body couldn’t take it any more and she died.   I’m in complete in shock about her death.  I keep looking for updates to her blog in my email.  I look for her to chat with me on Facebook.  I heard from her in some way nearly every day.  It may not have been personally, but I always knew she was there.  Now she’s not.  Just like that….suddenly her voice is gone.  Her thoughts are not in my life any more.  Laurie fought fibromyalgia, she was quirky in ways and loved the color yellow, she loved the ocean, writing, and most of all her family.  We were both foodies, and we both lost a dogs who left huge holes in our hearts, and later we both adopted rescue dogs who took over a new place in our hearts.  The one thing we disagreed the most about was our feelings about the chef Alton Brown.  She hated him, I love him…..it was quite a debate on one of her post!  I will miss you Laurie.  All the support and love you gave me, and our friendly banter.  May you be pain-free in a nice warm place near the ocean taking a walk with your father.

I didn’t expect my dearest friend’s mother to die this week.  She has been battling Amyotrophy Lateral Sclerosis (ALS, otherwise known as Lou Gehrig’s disease) for the past 9 months.  I’m actually relieved she didn’t have to live in her body with her mind fully aware without being able to communicate with anyone for very long.  I loved Kathy very much.  I wanted so much to be there to help care for her.  I wanted to be there for my friend and help her through this difficult time.  Now I can’t be there for her again.  The death of her mother is going to devastate my friend.  She was closer to her than anyone.  They talked daily.  They were best friends.  Her mother’s illness took a toll on the family.  Yes, she will have a lot of people around her, but I know she needs her best friend.  It is extremely hard not to be able to go.  I am so tired of feeling useless.  But this should not be about me, it should be about Kathy.  She was such a strong woman.  A single mother, raising 3 children mostly by herself.  She was so generous and kind.  She worked so hard and hard and hard….and she gave and gave and gave.  This probably gave her more joy, but from my view I wish she had been able to take more time for her.  She was just about to retire when she got sick.  I know Kathy did have a good life, and celebrated life, but I also know she was looking forward to slowing down and just enjoying her grand children.  Please don’t put off living until tomorrow.  Kathy was one of the best people I knew.  That sums it up pretty well.

I didn’t expect writing this post would make me feel better.

tonibernhard.comquote

4 days…….What if?

On By WendyIn Avascular Necrosis, Chronic Illness, Meniere's Disease9 Comments

Surgery is in 4 days.

I’ve been very nervous about a few things, mostly my vertigo and how it will affect my recovery.  I don’t like not having a plan.  When I don’t have a plan, I get scared.  I don’t like to admit fear.  I’m not nervous about the surgery itself.  I’m not nervous about normal hip replacement recovery.  I’m nervous about what I’ll do if I have a vertigo attack right after surgery.  What will I do if I can’t roll over on my left side if I have positional vertigo and the only way it is relieved is by lying on my left side?……I’m afraid of falling…….I’m afraid of how I’ll bathe …..

Then I really sat down and faced my fears….What if?

drawing by me....haha
drawing by me….haha

Really, what if these things happened, what is the worst that would happen?

About having positional vertigo….I can’t lie on my left side….ok, maybe it will be relieved by just turning my head to the left while lying on my back, or tilting it to the left while sitting up, or maybe twisting my upper body will do it?  If not, well golly, when I have vertigo from a Meniere’s attack I can’t get relief, and I live through it, I’ll live through it.  I won’t like it, but I’ll survive.  There is a maneuver that can be done that will stop the vertigo when I have BPPV, it does involve turning me partially on my left side for a bit, but I think it can be adapted.  I’ll just have to deal with it.  That is the biggest thing isn’t it.  I will deal with it.

About having vertigo while walking…or having a drop attack….Well I sure can’t control that!  If it happens, hopefully I can fall well.  Oh, I just giggled, I couldn’t help it.  I really do try my best to fall well on a day to day basis, and I do a pretty good job of it, I’ve only broken one bone!!  No concussions!  (Honestly you have no idea what a feat that is!!)  I don’t know how to fall well right after a hip replacement.  However, I am going to make sure I know how before I leave the hospital.  I’ll have the physical therapist show me the best way to move my leg if I fall.  Maybe if I fall I can do that, if not….well hopefully my hip won’t come out of joint.  If it does, we’ll deal with it.  It isn’t ideal, but something I just can’t control, no matter how much of a plan I have.  I can’t have someone with me 24 hours a day for over a month…or three….to walk with me, holding on to me, so that if I suddenly have vertigo of a drop attack they can catch me and help me.  I’d still end up on the floor.  OH…that’s another thing I’ll have to make sure I know how to do…how do I get up off the floor???  Guess that comes along with how to fall huh?  I wonder how many people ask the PT….so, what is the best way to fall?   hahaha    “Well first, hold on to your walker for dear life!”  *snicker*

I have to admit, I’m a little afraid about how to get in and out of the tub and taking a shower.  Our bathroom is not ideal.  It is not level.  The tub is far from being level.  I’ve never been able to stand in it to take a shower.  My balance is simply not that good.  I have only taken baths since we’ve been here.  The only times I’ve taken a shower has been when I’ve gone to the pool….maybe I could just go to the pool a couple of days a week to shower.  haha….yeah, that would work…considering I’m not getting aqua therapy any more, I’m sure they would let me just come in and use the pool plus it’s a about a 20 minute ride from my house….not the best idea, but it’s just a nice shower!!!!   I’m curious if the shower seat is going to sit level.  When you have a hip replacement you can’t bend your leg beyond 90 degrees, and you can’t put all your weight on that leg. so stepping in the tub is a no-no.  I have to sit down and have a straight leg out and slide in the tub.  They make a special seat for this, but our toilet is in the say.  I have not figured out how to make this work yet, but I’m sure the physical therapist who comes over the day after I get home will be able to do it.  I’m sure they have seen everything.   Hey, I know, I’ll just sit on the seat with my legs out of the tub.  Stuart can help wash the part that’s in the tub, and then he can wash my legs out side the tub.  Yep that will work.  hahaha.  Hey, worst case scenario.  We will work it out.

So…..What if?

What if?….. isn’t so scary now is it??