Month: February 2016

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.

 

Creativity As A Way To Cope

On By WendyIn Bipolar, Chronic Illness, Creativity7 Comments

As you look around the chronic illness community you will often find that we use creativity as a coping mechanism.  There is science to back up our intuition that creativity is a good thing for us.

“When we are involved in (creativity), we feel that we are living more fully than during the rest of life,” Csikszentmihalyi said during a TED talk in 2004. “You know that what you need to do is possible to do, even though difficult, and sense of time disappears. You forget yourself. You feel part of something larger.”

This quote comes from a much larger article on this subject I found on CNN’s site.  I thought it extremely interesting, perhaps you will too.  This is Your Brain On Crafting.

Today I thought I’d share with you some things I’ve been doing recently to spark my creativity.  I received a tablet for Christmas, it comes with a stylus so I can draw right on the screen.  I love it.  It’s hard when I have very little space, and I often have to stop working very quickly to bring out a lot of art supplies, so learning how to create art on the computer has been wonderful.  I’ve been using an app called Sketchbook. They post challenges that you can take on if you like.  This has been perfect for me.  I have had a very hard time creating art in the past year, deciding on what to do has been too hard.  The challenges give me a focus.  It’s like having an assignment back in school.  I get so involved in these projects that times goes by without me noticing.

 

 

If you would like to see the photos larger just click on one and you can see a slide show that will show them in a larger size.

The assignments were:

  • Upper left – Biggest Fear – Title “The Monster Within”
  • Top Right – Female Human Animal Hybrid – “Butterfly Woman”
  • Middle Right – Modern Mythical Creature – Loch Ness Monster “Nessie”
  • Bottom Left – Person I’d most like to meet – “Siddhārtha Gautama” (Buddha)
  • Middle Bottom – Abstract Tree
  • Bottom Right – Dream Home

Do you have a creative outlet?  You don’t stress thinking you are good at it or not, just do something.  No one else ever has to see it.  Coloring books are really popular right now, this is a great way to get your creative juices flowing.  Is there something you have always wanted to try?  Photography?  Learning how to crochet?  Knit?  Cook?  Stamping? Paper Crafts? Jewelry?  Poetry? Writing?  So much to try, so little time!!

After decades of research by Professor Mihaly Csikszentmihalyi he found getting involved in something creative produces the same effects as meditation.  Something he calls flow.

“When we are involved in (creativity), we feel that we are living more fully than during the rest of life,” Csikszentmihalyi said during a TED talk in 2004. “You know that what you need to do is possible to do, even though difficult, and sense of time disappears. You forget yourself. You feel part of something larger.”

If you’ve been reading my blog for long, you know I’m very into mindfulness and the benefits of it and meditation.  So learning this made me very happy, especially since I just haven’t been able to meditate recently.

(shh, I’ll share a little secret with you, I’ve been really depressed for a long time now.  The antidepressants I’m on simply aren’t working.  Things need to change.  I’ve had a psychiatric nurse practitioner here who writes my prescriptions, but she isn’t very good at working with me since things have changed.  I’m bipolar, I’m having a severe mood change, I need help. So I’m searching for someone I can really work with, and I think it’s time for me to go back into therapy.  I’m working on it, but it is taking a bit of time.  While I’m finding the right doctor and therapist that click with me, I’ll be trying to do as much work as I can to help myself.   Including, being a lot more creative.  I plan to post  much more about my days, to see just how I’m doing, the good days, the bad days, and all the days in between.  I hope you will join me on this journey.  I might even post more of my challenges.)

Keep Calm and Create

 

 

Recurring Grief with Chronic Illness

On By WendyIn Chronic Illness, Chronic Pain, Invisable Illness30 Comments

grief

Recently someone told me, not in these exact words, that they understood I have been though a lot and lost a lot, but I needed to stop pitying myself, I needed to move on.  I don’t feel like I pity myself,  but this hit me hard.

I’ve never said “Why me?”, I’ve always thought, “Why not me?”.   However, I have had a lot of losses, and sometimes it gets to me.  There are things I miss. Does that mean I sit around feeling sorry for myself because I can no longer do them….most of the time No….ummm….sometimes..maybe. Most of the time I’ve come to terms with it, and I’m happy with my life as it is….other times, the grief comes back in a wave that I just can’t control.  I’ve heard the same thing from other people who have chronic illnesses.

I have now read many studies, articles, and books that talk about this, and I found this is normal. (You can refer to the list at the end of the post for some of the material I read, if you want to check it out.)

Often we are handling our situation well, we have accepted the things we’ve lost….then suddenly the grief will hit us again.  Something may happen to spark it.  It could be you were feeling good and suddenly you are having a flare – now you feel horrible again, you just got a new diagnosis to add to your list, a medication you were on stopped working, there is an event that you can’t attend that means so very much to you, you tried to clean the tub and couldn’t….something happens….  Grief comes in waves, it doesn’t end just because you have been dealing with a situation for a long time.  Our grief is discounted.  People do not understand how we must grieve about the things we have lost, and how these losses continue to build up. Or how much we still miss this huge thing we lost. We cant hold this inside, it is not healthy.

When a person loses a loved one, they are expected to grieve. We often think there is something wrong with them if they don’t. We aren’t surprised when years later they still miss the person and sometimes need to cry. Everyone thinks this is normal. The chronically ill often lose huge portions of their life. The life they were living is suddenly taken away, changed forever. We aren’t just sick, but we often lose many things we loved to do, often our jobs, many friends, and a lot of our independence. We’ve lost all of this, but we are expected to bounce back, find a new life, forget what we had. I’m not saying we should sit around and feel sorry for ourselves all the time, but we need to grieve. We may have started a new life, we may be happy, but that doesn’t mean that we don’t have moments when we really miss what we lost.

I recently started having seizures.  This means, at least for a while, I am losing even more of my independence.  My husband is now working from home all but 2 hours a week, and for those 2 hours we are going to have someone come and stay with me.  Now I can’t just make sure someone is in the house when I take a bath in case I start to have vertigo, I need to have someone in the room!  This brought on a huge wave of grief. It brought back everything I lost. So much sadness, and it brought a lot of anger with it too. Of course, that is a stage of grief. I’m beginning to get a grasp on things, but I will need some time yet to grieve. I realized I haven’t really let myself grieve about a lot of my loses, I was so busy trying to be strong.

There is really only a couple of things I long for all the time and those are things that cause me to feel guilt.  Guilt also has a lot to do about letting go of loss.  There are some losses we hang on to because we feel so guilty we can’t do these things any more, this isn’t healthy.  We shouldn’t feel guilty, we are sick.  We can’t help that we can’t do things…but we still feel guilty.  Many of us feel guilty we can’t work. We feel guilty we can’t do things with our families.  Personally, I feel a huge amount of guilt because I can’t cook.  Hubby does so much, he is spread so thin, and he hates to cook.  I have a restricted diet, that makes things even more difficult, I feel so guilty that he has to cook, especially when I loved to do it….but I can’t.  It’s too dangerous.  It breaks my heart every time he has to cook dinner.  I know how much he dreads doing it, and how hard it is for him.  (but he really has become a pretty good cook)

Sometimes we are completely irrational for a while when we are grieving.  For example, I can get so angry with people, I feel so many people abandoned me.  I get so worked up about it and just want to scream.  If someone who normally gets in touch with me hasn’t, I will think they too have abandoned me, and will build up these huge things in my head….then they will get in touch and I’ll say, they did it just because they felt obligated.  Then, it will pass and I will realize my friend who got in touch, loves me and simply had things going on, besides I could have reached out to her. Thanks to mindfulness practice, and Toni Bernhard’s book How To Live Well, with Chronic Pain and Illness, I know that it hurt when people disappeared from my life because they didn’t react to my illness the way I expected them to, not because of what they did.  It’s my expectations that cause the pain.  I don’t know the circumstances, and frankly at this point, it doesn’t matter.  But sometimes, something will happen that will bring back that pain. And I will forget that it’s from my expectations and I just get mad as hell.  ….. And my dear husband hears all about it….then I calm down and let it go and I’m okay again.

The biggest point I’m trying to make it is, it’s okay to have a pity party, as long as it doesn’t last all the time.  It’s okay to grieve what you have lost, over and over again, it’s natural.  It’s okay to have a few things you will always long for….that doesn’t mean you are obsessed with it, it means it was very important to you and you just miss it.

Remember, if you lost a loved one, you would always miss them.  People do not think this is unusual, they do not think this is something we should completely get over.   We lost huge parts of our lives, why are we expected to not miss it?

I highly recommend Toni Bernhard ‘s latest book, How To Live Well, with Chronic Pain and Illness. In it she talks a little about this…check the chapter 35. It helped give me a way to deal with chronic illness. It gave me a lot to think about. Different ways to think about things, how to talk to people about my illness…. and well…I think you will get a lot out of it. Her first book How To Be Sick, I read over and over…. and I think this book is even better.

Greiving Chronic Illness and Injury – Infinite Losses
Experiences of loss and chronic sorrow in persons with severe chronic illness
Middle Range Theory of Chronic Sorrow

ER – ICU – 3121 – Home

On By WendyIn Chronic Illness9 Comments

I got home from the hospital on Sunday afternoon.  I just read the post I wrote while in the hospital.  I’m so sorry, I had no idea that it was like that.  I would have let you know I’m alive before now!  You should have seen the status I put on Facebook!  It completely blows my mind that at the time I read these things after I wrote them and thought they said what I meant to write.  Yep…*Swoosh* MIND BLOWN!!

Here’s what has happened….I’ll refresh your memory from the last post, as if you could understand it.

I’ve been having these little muscle twitchy things.  Sometimes just minor, sometimes more pronounced, it always happened on the right side and it coincided with long days of vertigo, or migraines.  When I was exhausted, stressed…ect.  On Wednesday it happened without these being present.  It happened 3 times at home each time getting worse.  We decided to go to the ER.  As soon as I walked ….wobbled…in to the ER, it happened again.  The first thing they did was have me pee in a cup (check my electrolytes), and then a CT scan. The CT technician was great.  When it was over he stepped in the office to do the paperwork and it started, I remember thinking, “Where is he”…and then I screamed when the elevator hit the bottom floor and I was in motion…and scared, really scared, and crying…I didn’t know why I was but I couldn’t help it.  The CT tech was leaning over me, telling me I was OK, that I was in the hospital, we were going back to the ER, and he just kept saying that.  That was the first of many for days….some better, some worse.

At first they put me in a normal room, it was just to be for a little bit, until they could get me on the 5th floor, it has cameras, they wanted to observe me all the time….seizure watch.  But there was no room on the 5th floor, so I was put in ICU.  I could not be left alone….or far from help.  Stuart was there, but he had to go home to take care of our pets, and gosh he does have to sleep.  Luckily, my sister came soon and helped, thank goodness.

While I was in the ICU I had a 24 hour EEG, actually it only lasted about 15 hours because I had more than 6 seizures during that time so they didn’t need the whole time.  It came back clear.  I was sent to a regular room.

The doctor came in and told me that I am having non epileptic seizures.  He said they had a theory…  At that moment, I had a seizure.  He told my husband that, no, what he was thinking would not cause anything like that.  He was thinking something much less violent.  There are theories, but I don’t even know right now.  I will be seeing  my neurologist today.  I see my PCP next week.  We’ll see.

Since I’ve been home the seizures have calmed down.  They aren’t as intense.  I don’t know if it will stay that way.

Strange thing, while I’ve been having the intense seizures I did not have vertigo.  I would have small little swirls, that lasted just seconds, but that’s all.  Yesterday when I had severe rotational vertigo for hours.  I didn’t have a seizure until it was over for a while.

But I was in the hospital from Wednesday night to Sunday afternoon without having any real vertigo?  Don’t get me wrong, I don’t want seizures instead.  I just think it’s weird.  Now that I’ve said that, oh lordy please don’t let me have both at the same time!

I think I’ve told you all I know for now.

So far…another mystery in this crazy world of mine.

I’ll talk more about this soon….but….I’m having a Pity Party, and I’m not ashamed to say it!

I hope this makes a bit more sense….I’m really too tired to proof read it, not like it did much good the last time.  🙂

A visit to the ER…what will they find out this time!

On By WendyIn Chronic Illness11 Comments

For the pat couple of weeks I’ve been having the intense muscle spasms on my right side.  They have always accord during during times of vertigo, or extreme opsilopsia.  I thought it was connected ti the axity brought on by the to things.  Until, last nighy.  I wasn’t really having much vertigo and the shocking w
Got much, much wore,  i had 2 attacks at home, and 4 in the hospital…so far, es getting progressively worse.
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WHAT THE HELL IS HAPPENING TO ME?

of course it couldn’t be easy, they did the normal chekup, ran labs, a CT scan…all negative.   I’ve ever had an EEG….measuring my brain waves….ohhhh…oh course I did not have an attack during the attach so it won’t so anything.  I haven’t seen the nerologist yet, but the doc on call thinks they will order a 24hr EEG, a CT scan with contrast, and if the don’t find anything they may have to take my cochlear implant out so I can grt an MRI,  they Don’t want to miss anything

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People who have stuck around star o driwndle. I never expected this from my main group on friends, but I took a long time  for me to get t place we’re I could sosialize, and still I can do what I used to….there has to be compromomise, as Denise pointed out in her ltouchig post Cowlick.  (Denise writes a great blog about living with Meniere’s, having hearing loss, living with the joys and challenges of having a sevice dog..she is a wonderful advocate and I find her bog to be filled with a plethora of information….now jump on over there, you will love the store behind the title Hearing Elmo  warning…she doesn’t pull puches, she will let you know what’s going on.  I admire her….yes Denise, I still admire you, pity party aside, I’m only diappointed to did invite me!  I could have brought a big bottle of a Whine, 
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My first Experience with Vestibular Therapy

On By WendyIn Chronic Illness, Meniere's Disease, Vestibular Illness2 Comments
balancing by wendy
“Balancing”  gesture drawing by wendy holcombe

Your vestibular system is the ear part of how you balance. You balance with your ears, eyes, and your body/feet.  My vestibular system doesn’t work so good, so vestibular therapy is going to teach me how to balance more with my eyes and feet.

When going into vestibular rehabilitation physical therapy last Thursday I had no idea what to expect, and to tell the truth I don’t have any idea what to expect at my next appointment, but I know it won’t be easy.

Ryan is my therapist (I may see another therapist at some point, there are 2 vestibular therapist there, but I would prefer to keep seeing Ryan, because I can hear him pretty well, and he is understanding about how to talk to me so it is easier for me to understand him), I’m impressed with him so far…very impressed.  I’ve never had anyone be so aware of my condition and so understanding.  No one.

He did a number of tests on me, said some things we need to work on…like the fact that my ankles don’t bend far enough.  Ankle flexibility and strength seem to be very important. Of course that makes perfect sense when a huge part of your balance comes from your feet.

I told him my experience of having BPPV for 11 days this past summer but by the time I got in to see the doctor it stopped the day before, the doctor didn’t want mess with it then for fear of starting it again, so they didn’t actually do the test.  I explained that since then I’ve had trouble turning over in bed, and at other times, but I’ve been tested twice since then and it was negative.  He tested me…it was positive…it was slight, but it was there, he also listened to me about when the symptoms started, he didn’t just look at my eyes and when it didn’t start jumping around immediately say, you don’t have BPPV.  He really listened and payed attention.  He then did the Epley Maneuver on me and I feel so much better. (I want to note here that the Epley Maneuver does not treat every type of BPPV.) I will probably need to be treated again, but not being jarred awake by spins when I turn over is wonderful.  I get a tiny bit now and then, but it doesn’t wake me up.   Happy Dance!

There was a point in the test where he had me stand and close my eyes..I was VERY nervous….meaning inside I was freaking out, he asked me to take a step and I…well I just couldn’t!  He encouraged me and told he he had me and I wouldn’t fall (in my mind I thought, “yeah, this little guy is going to catch this big old woman…in his dreams!”.  Out loud I broke into tears and said, “I don’t do the dark.”  I should have explained, I’m not really that afraid of falling, yeah I might get hurt, but that isn’t nearly as scary to me as the vertigo, and the dark can trigger vertigo…I don’t do dark.

My anxiety is so high.  That is so not a good thing.  Anxiety can cause vertigo. Vertigo causes anxiety.  There’s a bit of a Catch 22 there isn’t it?  I have noticed I do not like it when someone says that I’m anxious.  (Yep, he said that)  I get defensive. I want to scream, “If you had this would you not react like I am?”  I feel like being anxious is a negative thing, therefore they are telling me that I’m not dealing with this as well as I could.  I know I’m much more anxious than I used to be, panic mode, almost constant fear…it’s hard, really hard.  (No, I have not been keeping up my mindfulness practice, and yes I started meditating again this week.)

It was a fairly long intake appointment, all the testing, background questions….he was surprised I hadn’t had this kind of therapy before.  That’s because, most of the people he sees have not been living with a vestibular disorder for this many years before getting vestibular therapy for the first time.  *scrunchy face*

He warned me that this isn’t going to be easy, that I will probably be nauseous a lot, but if I can hang in there it can really help.

My homework…when I got there he noticed that I don’t move my head much when I walk, so my homework has been to look around. Open my visual range, turning my head. Of course, always using my walker.

I had a pretty big vertigo attack that started on the way home, and I felt horrible the whole next day.  I even fell down, I’ve only fallen once since my hip replacement until now.  (Really I kind of slid down the wall, I felt myself getting really bad, so instead of trying to race to a chair or something, I leaned on the wall and just slid down.  I’ve found that to be pretty safe.)

I’m trying to do my homework and look around, but it’s hard, moving my head really makes me sick.

I go back on Thursday, yep tomorrow, we’ll see how it goes.

He wanted to see me twice a week, but we asked if I could go once a week with homework. Hubby has to take me everywhere and I’m trying to reduce the amount of appointments. His work hours can be flexible, but it’s much better if he works somewhat normal hours, and I don’t want to exhaust my poor husband, being a caregiver is hard.  Ryan said that he would give me plenty of homework!