Am I getting worse?


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


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.

Stress should be a 4 letter word


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.

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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On my mind…

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…’s hard when I think about what my family is going through.



It’s just so hard sometimes…

This is a stream of thought post.  I just needed to talk and get some things out.  So no fixing of grammar or anything.  One thing I do want to say before you read this…..I’m not suicidal.

photo by w holcome

photo by w holcome

Is everything just so hard right now or is it the life through steroids?

I feel like I’m slipping away.  I don’t know who I am half the time.  I’m really not handling things all that well….yet in the next moment I am….then I’m not…then I am…then I’m completely melting down and that has been the last two days, and

I just feel like a weight is on me that I cannot lift and it is crushing me,grinding me down further into the ground past the point of breath….I’m buried alive….why, why cannot I still just not die.

Oh I am so ashamed to feel this way.  I am just so tired.  So tired of feeling the ups, the downs, the hope, the devastation when life kicks me in the gut over and over.  And I can’t believe I’m actually writing these feelings out here where everyone can read them.

I do not feel like this.  I don’t.  This is not how I handle things any more.  It has to be the steroids messing with me…it has to be….

But then…there has been so much loss lately…so much stress…and I found out yesterday that it is worse than I thought.

When you can’t hear very well…..let’s face it, I can’t hear at all without my cochlear implants on and working, and for a while now things haven’t been sounding right.  So conversations with my husband have not been as communicative as they normally are.  I have always been so proud of how our relationship has been so good, because we communicate so well.  When you can’t talk a lot, communication seems to fail.  He thinks I hear things I don’t.  I think I hear things he said differently.  And things simply do not get talked about.  I’ve been feeling like we just talking much about stuff….and when we do, things just don’t get anywhere, we just get a bit frustrated because I don’t understand things….well…I really didn’t understand something, and I got really upset about it yesterday.  I lost it, completely broke down, and I’m still spinning about it.

I thought our finances were doing ok.  Not great of course.  Tight.  We do have a mortgage and rent and everything.  But I thought we were ok, not in the negative ever month, being able to pay our bills…paying off credit cards….ect.  We aren’t.  We are still in trouble.  I’ve been spending money recently.  I’ve told Stuart when I was going to, or asked him….he didn’t say…”we really shouldn’t be spending”.  No I haven’t gone crazy, but I’ve spent when I didn’t need to.  We bought Christmas for our niece and nephew that could have cost half what it did.  He said, “It’s what we would normally spend.”  This makes no sense to me.  I’m so distraught.  He said….that in about a year we should turn the house over to the bank.  What?  and we can spend money on gifts???  I can buy things for me?  NO.   I knew we were in real trouble when Kiki started having diarrhea Friday night and Stuart said, “Oh Kiki please don’t get sick, we can’t afford it.”   What?  We discussed this before we got a dog.  If we couldn’t afford a pet, we should not have gotten one.  In my opinion, that is one of the worst things a person can do, and I know Stuart feels the same.  (I know we would have found a way if Kiki would have needed to go to the veterinarian, but that comment really scared me.)  We are in this situation because of me.  We have not been able to sell the rest of the stuff out of the house, or get the house on the market because of me.  No, the house may not have sold yet, but we are nowhere near even getting it ready.  All because of me.  I have gotten too sick for him to leave me alone to go to Durham and take care of things.

Now, how can I not feel guilt about being sick??  How can I not feel guilty for every doctor appointment I have?  How can I not feel bad about every extra thing we have to spend because of my illnesses?  How can I not feel bad about the trip we have to take to Duke….tomorrow?

We were talking about taking me to special clinics to look for more answers…..HOW could I even think of this???  I cannot allow my husband to lose everything for me.  I cannot allow him to work so hard at his life and never be able to own another home, never be able to retire, never be able to do anything but take care of me!  NO!  I will die first.   Please, please, let me die first.  I simply cannot live with this guilt or with this lack of quality of life.  How do you choose?  How do you choose?  Am I selfish and allow him to sacrifice everything for me, to help me…where it may end up there is no help, that I will end up just like this forever.  Or do I stop it.  and say enough.  I accept that life will be like this.

I have ups.  We’ve seen this, over and over.  I have some good times.  I had them not long ago.  I went for over 4 months feeling so much better.  Then I have times like this.  Will I be like this forever, or will I have the good times again.  Who knows.  I cannot predict the future, and I have to stop making up the worst case scenario in my mind.

We have to get more stable financially before I can allow him to sacrifice any more.  He does so much.  He is so exhausted so much of the time.  He doesn’t even see that it is because of me.  At least he loves his job now.  It is not draining him.  He really enjoys it.  I don’t worry about him so much there, but am I jeopardizing it?   I hope not.  Right now that is all I can do.  I have to trust that his boss really is as understanding as he says he is.  I have to believe.  I know his hours are flexible….I hope they are as flexible as they are making them.  He does a lot for me.  They work around my appointments.  Sometimes he leaves in a moments notice when I have an attack.  He always gets in the hours, he gets his work done….he says that is all his boss is concerned about.  But I am concerned.  I do not want him to risk this job over me.  (they did just put him in charge of a project, so they must believe in him, right?)

I have to be more involved in the finances and everything as often as I can.  I have been hiding.  I have not been able to handle the stress of it.  I do not deal with instability.

I’m not dealing well with not being able to do anything.  With not being able to help at all.

I’m simply not dealing well.

I do so wish we had some help.  I wish someone would give us a maid for a day as a Christmas present.  Or better yet, a maid service.  We used to have one, got a great deal on Groupon, had a maid come in just once a month, and it was perfect.  For this tiny place, I’m sure it wouldn’t cost much….well for some.   But it would get the deep stuff done.  Things that just don’t get done…..oh who am I kidding, a lot doesn’t get done lately.   (I think that’s why Kiki got sick, she found something on the floor, I swear she’ll eat anything she finds!)

I’m tired.  So tired.  Between the spinning head and the aching back, sleep is hard.  And now my brain will not shut off….I worry.

Please Please tell me I will be able to deal with this better again after I get off of these dang drugs!   But then will the awful vertigo get worse again?  I live like that either.

Why does it have to be so hard????


I did it Alone. Spinning another day…

At a little after 6am Stuart was leaving for work and I woke up and decided to eat a little something and take my first steroid of the day.

I woke at 8am with my stomach hurting…ugh, steroids.  Then I thought,  “Oh good, it is better today, knock on wood”…and I really did!  I took an antacid for my stomach and went back to sleep.

I woke up at 10am with horrible heartburn and spinning.  sometimes you just want to cuss!

I thought, ok….slow.  I can handle slow.  I hope.  I took meds and slowly, very slowly started to get up.  Ah…let’s just lie here for a minute.

Try again….slow.  VERY SLOW….  I feel like I’m walking on a merry-go-round, and it’s on a rocking boat….ugh…my stomach takes a lurch…it’s ok, just stop here for a second.  Grab my walker….oh nice walker, I love you so much.   slowly I get up…I am sure no one has ever seen anyone move so slowly.  Once I am up, well kind of up, I am hunched over the walker with my head leaning to one side, I am doing pretty good.  I start to head to the bathroom.  WAIT…phone!  I grab my phone, just in case.  If I fall, I need to make sure I can get help.  and off to the bathroom.   I DID IT!  I got to the bathroom ALONE!  During vertigo!  it was a very slow spin but I did it!!

I did it 4 times today!!!   I have been slowly spinning all day!!!   If I keep my head exactly still things are pretty still, but if I move, WHOOSH!

This morning I was very proud of myself.  Not only did I get to the bathroom alone, I got in the kitchen, grabbed a banana, a couple of pancakes that were in the fridge and got back to the bedroom…got my CI’s….and things I’d need for the day  (meds and such) and go myself to the couch.  Once I went from the standing position I was in to sitting the vertigo went WILD!  What on earth?  who knows this is the most bizarre thing in the world, no rhyme or reason to me!

So I collapsed and tried to calm down…and hung on!  Whew!

It slowed, and I was ok, but not great by any stretch of the imagination.

It’s about 11am by now.  Stuart had an appointment this morning and texted to check on me.  I told him I was spinning but I handled it, however, if he could stop by on his way back to work and help me get settled it would be great.  So he did….and I sent him on his way!  Even though I was not doing well when he left.  It is now almost 4pm and I have done a good job of handling things today.

I’m proud of me.

I still want to share with you guys just how I got through some of the roughest parts this past month, and everything that went on in my head, and heart.  Things I didn’t want to admit to.  I was ashamed to admit I wasn’t handling things as well as I thought I would.  But I got through it, and learned a lot along the way.   Of course, I’m still going through it….so…we’ll get there.

One thing that really helped me get through all of this…..

So I feel bad about it…feel bad.  That’s OK.  Acknowledge it.  Don’t feel so guilty about it.  I don’t have to feel positive all the time.  My positive go to attitude is still there, but it is perfectly fine to feel bad about this, to feel sad, angry, and well….just bad.   I’m not going to wallow in it, I’m not going to get stuck in it, so I don’t need to beat myself up over it either.  Accept it, and have some self compassion.

Things I should note today….  woke feeling better around 8am.  Woke with vertigo at 10am.  Had rotational vertigo all day, various degrees of spinning speed.  Right side of face/head felt funny. (by this I mean, it feels thick).  Had a migraine.  Took a Maxalt, pain got better, but side of head sensation did not go away.   *could some of the vertigo be migraine related?   Ears feel full, but not as full as they have over the past few weeks.  When I drink I can really feel the coolness in my right ear, it actually feels like water gets in my ear.  there is not water in there if I feel in there, but it feels very strange.  am I just noticing this because I’m hyper aware now?