I got lost!

Flying Brain by Pixelnase

Flying Brain – photo from deviantArt.com created by Pixelnase

Throughout my journey having chronic illnesses I’ve fought hard to not allow my illnesses to define me.  Yes they are a part of me, but they aren’t all of me.  I worked hard to keep some sense of normalcy in my life…and to try my best to keep true to me.

I feel after everything that happened this past year….and not all of them had to do with my illnesses…I lost myself.  I became the sick person.  I stopped trying to be me.  I stopped posting regularly, I stopped doing my art, I stopped cooking (partially because I had a dizzy spell while cooking and almost hurt myself, but I’ve been to scared to start back)….I’ve been living in fear and self loathing.

2012 was one of the hardest years I’ve lived through, (topped only by 1993, the year my mother died).  I had 2 new chronic diagnoses, my dearest friend and constant companion of 19 years died (yes I am talking about Sandy), I had contact from someone I’ve loved unconditionally who I haven’t heard from in years and the correspondence was filled with hatred….just true and deep rooted hatred.  It would be hard enough for me to deal with anyone hating me, but this person….well the wound cut deep.  It’s so hard to explain.  I don’t remember a lot of my life before I got my bipolar stable, and I’ve changed so much since I met and married my husband, and since I’ve been sick.  I love me…me as a person.

But me as a person was lost.  I didn’t realize it until we came to Tucson and I got so sick.  Not just my normal chronic illnesses, but more and more.  I had a cough that wouldn’t go away…I’m still coughing some.  I finally saw the doctor, and I had bronchitis and Asthma.  I was born with Asthma, so I’ve known it was there, but supposedly I’d “grown out of it”.  I would have an attack if I got around someone with perfume on, or someone smoking, or around things I’m allergic to.  But now, I’m dealing with it every day.  And unfortunately, I had more vertigo attacks in November than I had the entire year combined.  I’ve also been having a huge problem with my GI system.  I know my food issues and I’m careful, but things sneak in….and I had no idea….still I’m having bowel issues.  And I’m gaining weight.  I’m back to being 5 pounds from my largest weight.  And that’s way too much for my short body.

It has just been too much.  More illnesses.  More conflicts to deal with.  More being stuck in bed.  I got lost and didn’t even know it.

I was lying in bed recently and realized how much I hate me.  No, I don’t hate me as a person, I actually like the person I’ve become.  Adversity really does create good people.  (and I think I am a good person)  But, me…my body….I hate it.  I’m larger than I want to be, or should be.  I have no energy, I’m sick ALL THE TIME!  I feel my body betrayed me. And I don’t want anyone to see me when I’m ill.  When I do actually get to see someone, I try my best to look my best.  I know this probably causes a bit of confusion for people, I don’t look sick when they see me, so how can I be so very sick.  I remember one day when  friend came to visit with her 2 children.  I loved seeing them, but I started to feel very worn out and dizzy before they left.  I tried so hard not to let them see.  Soon it was time for them to leave, Stuart and I walked them to the door, arm in arm….and when the door was closed, I collapsed.  But I couldn’t let her see.  I think I’m afraid if people see how sick I am they will shun me, and I will lose all my friends.  But really, I think I’ve lost most of them anyway.  I’ve hidden away.  And I don’t think I could stand for someone to see me really sick.  I’d rather be with just Stuart than for others to feel uncomfortable because I’m sick.  Gaining weight hasn’t helped.  People expect sick people to be underweight.  Instead I’ve gained about  60 pounds.

So, now that I know what has been happening to me, I am determined to get me back.  The inner me.   My blog was very important to me, but I allowed someone to scare me away from it.  I can’t do that.  I have to write and reach out to those who can help me and those whom I may be able to help.  This is such an important part of me.  My art has been an important part.  I wanted to have something I did consistently….but I’ve failed…I need to get that back.  I need to do something that is productive and useful.  I’ve felt like a useless burden for too long.  I found out about a few charities in my area who knit or crochet blankets, scarves….ect….for needy.  One charity that really spoke to me is one that donates to foster children, so they will have something special that was made just for them.  (as many of you may know, Stuart and I had planned to be foster parents but ended up not being able to because my illness got so much worse).  Foster children hold a special place in our hearts.  The charity I found makes items for foster children in a neighboring county, at some point I would like to see the same type of charity started for the county we live in.

So here’s the beginnings of a plan for me.  Begin doing something that will make me feel more like I’m a contributing member of society, learn to love my body no matter what size it is or how sick it is, stop listening to old ghost from the past and hope they can move past their hate and find a happy life, learn more about dealing with my new diagnoses, and learn American sign language.

I didn’t mention, I haven’t been able to hear out of my right ear…with my hearing aid…for about a month.  So we really need to learn ASL.  We will be starting a class here in Tucson next week.  It is a beginning conversation ASL class.  We will miss the last couple of classes, but feel it will be worth while.  This is through a Hard of Hearing and Deaf group, many of the members are deaf or severely hard of hearing, so I shouldn’t have a problem with not being able to hear in class.  (Stuart talked to the teacher and she assured him it wouldn’t be a problem, and many people who have Cochlear Implants are members there too.

 

Hard to Get Started Again…

I miss blogging, I miss my blogging friends….but it’s hard to get started again.

Now I think of things that have happened since I’ve been away that you don’t know about, and things that are going to happen….so much to talk about I’m overwhelmed.   Eh….maybe not so much.  My life really isn’t that exciting.

I went through a bout of depression, that knocked me off my feet.  By that I mean, I didn’t want to get out of bed.  I’d wake up and think, what reason to I have to get up?  I couldn’t think of a reason, and the sleeping side effect was not helping!

Vancouver Sunrise by Lauazee from DeviantART http://fav.me/d32s7vm

I know part of the depression started when Sandy died.  But the biggest problem is a bit strange….at least to me, my therapist says it’s normal.  I’ve been feeling better.  The Meniere’s isn’t bothering much at all since the surgery in December.  The Intracranial Hypertension (High CSF), is minor and under control with medication.  My migraines are not as painful, but they are causing vertigo often!  So much so that there is no way I’ll ever be able to drive again.  The Migraine Associated Vertigo (MAV) gives me NO warning.  I wouldn’t even be able to pull over to the side of the road, the world just goes crazy immediately.  I can’t even walk around the block by myself, or do things in the yard.  I tried one day, and it did not end up good.  So I’m stuck in our house, unless I have someone with me (meaning Stuart).  I know there is plenty I could do in the house, but when you can’t do things you want….well everything else kind of falls flat.

But I’m better.  Really.  It’s kind of funny.  I was watching Sponge Bob Square Pants and he was singing, “I’ve got an attitude of gratitude….”  And I realized I used to every day think about things I’m grateful for, and I hadn’t been lately.  So I started thinking about it, and I felt better.  Also we’ve been talking about fostering a dog, or perhaps adopting.  Sandy was a rescue dog, and we’ve been thinking that taking care of another dog who needs rescuing would honor her.  This has made me feel better about things, I really miss Sandy, and do NOT want to replace her, but the thought of honoring her by helping another dog….that makes me feel better inside.

Now that the sleeping has gotten back to normal, I’m feeling better about other things too.

We went to see the audiologist on Wednesday.  I picked out all the options for the Cochlear Implant (CI) that I want!  We expected to have heard from the insurance by now, but it’s seems to be a big old pain in the butt.  And all I can do is, wait patiently.   I’m not the most patient person!

Now, I’m started… let’s see if I can’t make a habit of this!

Mother’s Day is very hard for some people

image from farmhousecountrystyle.blogspot.com

Every year since my mother died Mother’s Day has been bitter-sweet.  Everywhere I look people are telling you to get in touch with your mother, let her know how much you appreciate her, and how much you love her.  I’m sure there are many people who have lost their mother or perhaps lost a child, or for those who have mother’s who are not someone you really want to thank….you know they are out there….and this holiday is very, very hard for them.  Just as it is for me.

This year, Mother’s Day is especially hard for me.  This year, I expected to be a mother, a foster-mother yes, but a mother non-the-less.  That dream was taken from me this past year, and it won’t be coming back.  I’m okay with this decision, but it stings right now.

Mother’s Day is also very hard this year because I lost my little baby girl….yes, I’m talking about Sandy.  I know many won’t understand because she was a dog, but she was my baby for 19 years.  She was more of a constant in my life than any human.  And yes, it may sound silly, but most Mother’s Days I got a card from her and Max.  (yes, I’m not delusional, I know Stuart sent the cards, but her little paw print signed it….and I was her mommy.)   Stuart would joke around and make a special breakfast for me saying that our children insisted that he do so.  Yes, this Mother’s Day will be very hard.

This week Sandy’s memorial bench arrived. It’s sitting on our front porch, but we haven’t been able to inter her remains yet.  Yes, that will probably happen this weekend.  Her ashes are in a little box, this will be sealed in her special box (where we kept her stuff), with her special blanket, sweater, collar, just little things we think she would have like to have.   All of these things will be sealed in an airtight container, then sealed in the bench.    In our will we have a provision, when we die we plan to have our ashes mixed, Sandy’s ashes will also be mixed with ours.  (Max’s too, but since he is still alive, I don’t want to say things like that.)

Are we strange for caring so much about how our dog is cared for after death?  Are we the only ones like this.  I hope not.

But I’ve wandered away from the point of this post.   For all of those who find holidays like Mother’s Day, Father’s Day, Valentine’s Day, and even Christmas hard, you are not alone.  For all of you who now someone who has a hard time during these holidays, reach out.  Everyone needs to feel a little love.

I Keep Writing Because…. #HAWMC Day 24

Bonus Prompt: I keep writing because… Start your post with this sentence and, as the title says, keep writing. Free write for 15 minutes without stopping and see where it takes you.

(today’s original prompt was to post a Health Mascot.  My dog Sandy is my mascot, but I couldn’t right about that today.  She died April 18th, one day I’ll write about what a brave, and wonderful dog she was, how many health issues she had and over came, how she was as the vet often called her, “a Wonder Dog”.  But not today.)

photo from Flicker Sharing by earthunderheaven (to find more of their work click on the photo.)

I keep writing because…recently I keep writing because I am determined to finish this challenge.

Actually, I’ve begun to wonder, why I keep writing.  I know why I started, I know I have made some good contacts, friends, and my heart has been here. This blog has really helped me through some tough times when I felt no one else was listening.  I’d write, just to write, and I found there were others out there, others who felt like I did, others who needed to have that contact too.  Now, I’m hurting so much.  I’ve had so much loss this past year.  I felt I dealt with each one, I was strong, and positive.  I was told I was the most positive person someone knew.  I was proud of myself and how I was looking at life.

Then another diagnosis came earlier this year, and it has been hard to deal with.  I couldn’t be that positive about it.  I’m still a bit in shock from it, and simply not sure how to look on things positively.  I’m larger than I’ve ever been, and the doctors just seem to be ignoring it, yet they tell me my triglycerides are high, and I’m borderline high blood pressure….ect….but they all say, don’t worry about the weight right now, you have to focus on this.  I’m afraid I’m on my way to diabetes.  I read all these books on nutrition, cut out soda, all High Fructose Corn Syrup, snack on nuts, cheese, fruit, veggies, eat at home more, cut out gluten….all these will help you lose weight…but I do all of that.  so why can’t I lose weight?  I need help, I’ve been to a nutritionist, no help.  Most don’t even know what fructose intolerance is….I know more than most of the “professionals”.  I’m grieving for the loss of what I used to be, what I used to look like.  I now have no energy, can’t exercise because it will raise my CSF pressure, I can’t walk for long because of my hips, I can’t even enjoy sex.

I’m grieving because I lost everything that I gained early last year.  I can’t drive again…but I have a cute little car.  I can’t be a foster parent, even though we went through all the classes had all the references…everything…but no, I can’t because it wouldn’t be fair with my health issues to bring a child into this.  And frankly I don’t think I’d pass the physical now.

and worst of all I lost my best friend, my little baby dog.  A HUGE part of me died with her.  I have to find a way to make that part live again.  To put the pieces of my life back together, even if some of the pieces are missing

Why do I write? Because I need to.

But I also need to take a break.

I may write sporadically for a while to let you know what is going on, but I need to take a break from the internet.  I won’t be reading other people’s blogs as much or commenting as much.  I need to take some time to focus on me.  I may write about it, I may not.  right now I’m simply trying to figure out how to get past all the grief of things I’ve lost this year, or how to grieve without losing myself.  I need to focus more on the spiritual side of me.  I need to make some huge decisions.  My husband and I need to grieve over our Sandy together, and figure out how we will carry on with our family now that such a huge part of it is gone.  We may end up moving.  As I said a lot of decisions….and a lot of needs.

But yes I will write again.  Because I must.

End 15 minutes…plus a little to put in the photo.  : )

Quick update…well, perhaps not so quick..

Thought I'd share a sketch from my journal I drew last week. She looks a little sad doesn't she?

I planned for this to be just a quick update…because I know you are all just sitting at the edge of your seat. haha
but I got carried away…*sarcasm coming*…but that’s just so rare. : )

Stuart had his second interview today, and he had to take a test {shudder}, should know something very soon. (Hopefully today, but no later than tomorrow I would think.)

About me…heck, I just don’t know. Hearing is way down. Not hearing from left ear…although the tinnitus sounding like static woke me up! Don’t you hate that???
Even my right ear is down a bit.
Not having vertigo, but feel off, light-headed. Often feel like I’m about to have a vertigo attack, take meds and it goes away.
Pain is minimal now. The LP site is still tender and has a small welt, but I know that’s because I had 2 within a week.
Still not feeling like I can do much. Mostly in bed. (rolling eyes here…oh, don’t do that..you dizzy headed girl!)
Went to the store, just one mile from our house, day before yesterday. To get one thing. Got home and collapsed, did not feel good at all.
Yesterday I had a couple of visitors for a few hours. It was so nice. A friend and her 1 year old came for a visit. While they were here, I just pushed everything aside, and enjoyed the moment. That child is such a happy kid! It meant a lot to me, I don’t have many visitors.
It wore me out a bit, but it was magical while they were here.
I am so not in the loop with my “friends” any longer. I didn’t know one is pregnant. (well, really I’m not friends with her, but her husband used to be close to us, before they got married…it’s strange) She’s due in February.
I didn’t know another couple had their child last week. Are these people really my friends any more? I just don’t know….

I hate to admit it, but I’ve been pretty depressed lately. I keep telling myself that I’ll take things as they come, and just roll with it. If life isn’t what I expected, change my expectations. But having the hope…the reprieve from all of this for months, and then it all coming back…well, it’s hard. I’m grieving, I know it. Does that mean I’m giving up? I just don’t know.

Those who have been reading my blog for a while know all the major plans I had when I was better. I really thought things would stay that way! I bought a car!! The cutest car in the world. Now, I can’t even drive it. I stated gardening, and it mostly died because I couldn’t keep it up. I was going to be a Mom. Now I won’t.

I wasn’t going to talk about all of this. I’m still hoping things will get better, but some of these things won’t change. No matter how much better I feel again, I will not pursue getting a foster child. I cannot take the chance it will happen again. I’m not even sure I’ll commit to a garden again. Too much expense, time, and effort to just watch it die.

The hearing loss, do I move on and find a way to live in the non-hearing world. I’ve joined an email group that is composed of people with severe or total hearing loss from Meniere’s. They all seem so well adjusted. But some things are so hard to hear. Most have no friends from before their hearing loss, only friends that they’ve met afterward. I simply don’t want to be to the point that all I hear is this damn noise in my head!
The other day i laughed, I had been all teary about things I can’t hear, like the cricket and things chirping on a summer night…then I realized, I hear that sound a lot, even when they aren’t around. I had to laugh. It’s the only way sometimes.

I was able to connect with my Psych today via email. I told him how I felt about things. How depressed I am, and all that stuff. He doesn’t normally use email because of the lack of confidentiality. Yeah, I don’t care who knows about me and my stuff. I know it’s ethical, and he should be that way, but certain concessions must be made for the hearing impaired! Dang-it! We’ll see how this turns out.

Once again, I’ve bared my soul.

thank you all for listening.

How my life has changed….and the straw that made the camel’s back snap.

First, I’m feeling a bit better physically today.  Not as much pain, and not having that weird feeling you get after being sedated.

This is the first time after having this procedure that I do feel like I had surgery.  (I may have mentioned that yesterday.  Forgive me if I did.)

Over the past couple of years my life had changed A LOT!

My biggest health problem went from being my hip, to the Meniere’s.

Almost everything in my life has changed dramatically starting in the winter of 2009.  That’s when the Meniere’s came back full force, and I went bi-lateral.  By April of 2010, I was getting the Endolymphatic Shunt Surgery in my worst ear to stop the attacks from happening every day.

It worked, for a while.  By October of 2010, I was ready to talk about the surgery for my left ear, the attacks had returned, happening many days per week.  That’s when I was asked if I’d be interested in the research study.

And if you’ve been following this blog you know the rest.

But just how has all of this changed my life?

  • I wasn’t working when this started because of my hip, but planned to go back to work at least part time.  That isn’t going to happen.
  • I had a little reprieve from my symptoms earlier this year.  For 4 months.  I was almost normal.  I took it for granted, and keep looking for the magic button they pushed to make it better again.
  • I’ve lost a good part of my hearing.  I can’t hear in my left ear, and even with my hearing aid it’s a bit off on the right side.
  • I don’t know how to be a friend to my old friends any longer.  We did things, went places, … you know things you do with friends.  I can’t do most of these things now.  Even when I am feeling better, my hearing is so off, I find it very difficult to spend time with people unless it’s one on one.  Restaurants are horrible, Malls…no way, parties are often torture.  Even just having one person, if they aren’t in front of me talking straight at me, it’s hard.
  • A friend recently told me that she was hurt that I didn’t put more effort into our friendship especially during my good period.  I look back and realize, I didn’t do much with any of my friends, I tried a couple of times, but my hearing was still such an issue.   And people were very busy because, life went on without me, and I was crazy busy, because, life was restarting for me.  It was difficult to get back in the swing of things, by the time I finally felt I was finding my footing….it all came crashing down again.  I look back and think…if I had known this would happen, I would have spent that 4 months much differently.  (certainly not spending most of it trying to become foster parents!  That’s not going to happen now…but I didn’t expect to only feel better for 4 months.  So most of that time, we spent wrapped up in trying to be parents.)
  • So I realized, I don’t know how to be a real friend to the people who were my friends prior to my illness.  I try hard not to have my illness be my life, but in a big way it is.  I have to think about everything I do….how will it affect me, and my illness.  How much will it take out of me.
  • When I do see my friends I try to look better.  I get out of bed, if they come over, put on something decent (even a bra!) and at least make it to the couch.  Lately, that’s a very big deal.
  • When I was feeling better and driving, and would try to meet my friends, I was scared.  I hadn’t been spending time with most people for a while, and I was uncomfortable, talking with them, trying not to talk too much about me.  But my life was changing so much, that was hard.  And now, my life is static, and it’s even harder.
  • Many of my friends don’t like to email, text, or IM…and right now that’s the only way I can communicate.  So it’s hard.
  • I can’t keep my house as clean as I’d like.  We decided to get cleaners to come in, but that might not happen again….(more about that later).
  • I feel like I really needed some time away from here..away from this house…..just a change of scenery.  I was scared about seeing my friends in Tucson, how they might react to my hearing, and health issues.  But we’ve been emailing and texting…so I don’t think it would that big of a deal.  My best friend there is Japanese, so she has a hard time communicating too, I think that makes her more understanding about my communication issues.  But, the trip isn’t going to happen.  (again, more of that later.)

I’ve been feeling like I couldn’t post a lot of things lately.  Things that have really been weighing heavily on me. (like not knowing how to be a friend….I don’t want to be just the “sick friend” people tolerate.  If I’m your friend, I want to be more than that.  And right now, I don’t know how.  I can still listen and try to give advice (if you are willing to “talk” with me by writing.)  But it does seem to take a lot of the personalization out of the situation and I know that’s hard.  I realize how hard these things are for my friends, but I wonder how many know how hard it is for me.

They have their busy lives…I get to watch the world go by without really being able to join in…they can work, exercise, have children, go to dinner parties, go shopping….things normal people do.  I can’t.  And it hurts…down deep inside…that I just can’t.  I don’t fit in.  And I don’t want to be pitied.

Oh, and our house is only 4 years old, and we have to get a new toilet.  For the master bathroom.  They said it would be cheaper than fixing it.  It broke where the tank and the seat are connected.  So one night I went downstairs, and found water everywhere.  So I’m worried about possible mold problems.  I’m being shrugged off about it.  Just put a little Kilz on it….on the ceiling downstairs, yes…but what about between the upstairs floor and the ceiling downstairs?  We had to move from a rented house once because of mold…I don’t want that to happen with this house.

Another straw landed on this Camel’s back today….I think I heard it snap!

Stuart was told his job will end in one month.  They’ve decided they can’t afford him.  *sigh*

He has an interview tomorrow.  But this breaks my heart.  I feel like he will feel he has to take the first thing he finds that pays anywhere near enough, just so we can survive.  I can’t help.  I can’t do anything to bring in some income.  I really want to do something.

This sucks.

But surely, it will get better from here.

Things have to go up from here.

I feel like I’m one of those old cartoons that have been flattened by an anvil…..now just peel me up and pop me out…and things will be better!!

Oh heck, we’ve been through a lot, we’ll get through this.

Life is changing again.

Perhaps it’ll be fun.

“We Have to Wait and See if…”

I started writing this post a few different times, but nothing I say seems to come out right.

I don’t want to sound all pessimistic.  I’m not…I’m hopeful…but I’m tired….and a bit frustrated.

I saw the audiologist, had a hearing test, and saw my Oto. , Dr. Kaylie, on Tuesday.  (August 6th)  It was a very emotional day, and I feel like all the answers I have are still…wait and see….

My hearing test was dismal.  My right ear is pretty steady, my left ear is now pretty useless.  Yes, even with the hearing aid.  It is hoped that it will come back, but it’s a wait and see kind of thing.  I scored 0% on the word recognition in my left ear.  This was my “good” ear before.  Now the volume is down like the right ear, but the sounds are so distorted I can’t understand them.  It’s heartbreaking really.

Finally, I asked Dr. Kaylie, “do you have any idea if I will continue to have relapses?”  He said no, “We’re in uncharted territory here.”  I was pretty sure that’s what he’d say.  But it still stung.

I explained that we were in the process of getting licensed to become foster parents, but without knowing, I just don’t see how we can.  Dr. Kaylie, looked very sympathetic, but he couldn’t say much.  He did say, since things improved so much before, he believes it will again.  That my pressure hasn’t stabilized yet.  He has every hope that my hearing will improve.   (for some reason, I’m not as hopeful.  I guess I’ve heard it before, with my right ear, and it didn’t get better, but at least it is stable now.)

If I take out my hearing aids, I can’t hear anything but very loud noises.  I can not make out speech.  Just a few months ago, I could still hear, and understand most words.  If I wear the left hearing aid, it’s just so I’ll have the volume control to work.  (button on right hearing aid is up, left is down)  There’s really no reason to wear it.  So did I waste $2000?  maybe…We have to wait and see if my hearing improves….

Will I be able to drive again?..We’ll have to wait and see if the disequilibrium gets better….

Headaches?….we’ll have to wait and see when your pressure levels out.

So I’m in waiting mode…..and I don’t like it!

I will post my hearing test for you to see soon.  (right now I can’t get it to come up on my computer…..I do have a love/hate relationship with technology.)  I will post the test from earlier this year, and the one from Tuesday.  You can see how much things have changed.

I posted a photo I created on my Create To Heal Blog, that I’d like to share here too.

Fractured Ear (Hearing)                                                                              by W. Holcombe all rights reserved.

During my hearing test I started to cry…just a little…I could tell things were very bad.  Then the audiologist tried to adjust my hearing aid to help…it didn’t work.  I held it together.  Until I got to the waiting room and saw Stuart, then I broke down.

I have to admit, I’m scared now.  More scared than I think I’ve been in a very long time.  If the hearing doesn’t change in my left ear, and if my right ear’s hearing diminishes…I won’t be able to hear.  It’s already so hard, just hearing parts of things.  Missing so much.  Dr. Kaylie says I’ll never be deaf, that he would give me a cochlear implant.  But, I’m scared.

And, now once again, I have to change my plans for my future.  I have to come to terms with the knowledge that, I will never be called Mom.  This is something that’s going to take me a bit more time to process.

So….We’ll Wait and See.

Please take the time to check out Kelly’s series on Fly with Hope this week.  Today, (August 8th) is my story.  “I want to live! But I don’t feel like I am!”

 

Also, take a minute to drop by Phylor’s blog and check out the playlist from other chronic bloggers.  A lot of great music, and a lot of inspiration!

And as always.  Thank you so much for all the support you give me!