Quick update…much more to come

I’m tired.

I sat down to write this and all I can think is, “I’m tired”.  Hell, I’d say I’m pretty exhausted, and I still have so much to do.  Just praying I can accomplish much more before I completely collapse.

On the 23rd the movers came and packed up our house to move us from North Carolina to Arizona.  We started our trek across the country the next day.  We had planned to take it slow, drive about 4-5 hours a day, as long as we got there sometime this week we thought that would be fine.  After the second day we got word that our stuff would be arriving in Tucson on Tuesday (the 29th), if we drove 8 hours a day for the next couple of days we would be there in time.  It wasn’t a huge deal if we weren’t there when everything arrived, we had people who could take care of it for us, but I could tell that the thought of us not being there when they unloaded was stressing Stuart a little, so we decided to make it happen.  We arrived the afternoon of the 28th, and our stuff arrived at 8:30am the next day.

The trip here was pretty uneventful, just a few little things bare mentioning.  For most of the trip I had a stomach ache.  Gastritis was hitting me hard.  I could only handle bland food.  That’s a little challenging when you are driving across the country with a little dog and have an allergy to wheat.  I ate a lot of oatmeal and baked potatoes.  One night I did venture out and had steamed chicken and broccoli with rice…no sauce, and I did okay with it.  I’m happy to say that my stomach calmed down now after we got here, I even had a piece of pizza.  The pain in my stomach was so bad the first day that I seriously considered going to the ER, but I just had an endoscopy done and it only showed gastritis, so I was pretty sure it was just flaring.  (Gastritis is a general term for a group of conditions with one thing in common: inflammation of the lining of the stomach.)  I have been wondering why my stomach hurt so much on this trip and the only thing that I can think of that was different was that I stopped taking turmeric last week.  (I know you are all thinking, stress, but I have been under a lot of stress the past month and I haven’t had a stomach ache)  I’d been taking tumeric for months (maybe a year) for inflammation, but I wasn’t sure it was doing much.  Now I’m beginning to think it was reducing the inflammation in my stomach.  I started taking it again last weekend, and I haven’t had issues since.

I must admit the pain caused me to be one irritable cranky bi…umm…witch.  Things that normally wouldn’t phase me in the slightest were suddenly getting on my nerves something awful.  Yes, the stress of moving did not help.  I was feeling a bit emotional about leaving the Southeast.  It just seems a bit final.  I simply don’t know if I’ll see some of those people ever again, I’m not dwelling on it, but it makes me sad.  And not knowing what to expect with Stuart’s stepmom was also probably contributing to the stress.  I really hate that word.  I hate that just normal day things that we have to deal with can cause so many physical symptoms. Stress is not always a bad thing, but it can do havoc on your body.  And I hate it when a doctor tells me that “it’s stress”, argh!

So the trip was good except for my tummy ache and being a grump.

On the 29th the movers delivered our stuff and I saw the house for the first time.

When I walked up to the house a hummingbird came right up to me, I took it as a sign that this is a good place. (both my and Stuart’s mom loved hummingbirds, I have a couple of meaningful hummingbird encounters, I may share those on another day)  The house has a good feeling about it.  The house is old and small, but it’s well taken care of, and it has an amazing yard.  Not the kind of yard you have in the Southeast, but a cool Southwest yard.  It also has a pool.  I’m so excited about that!  Oh, I’ll post pictures soon, I’ll show you everything!

After the movers left we went and had lunch with Stuart’s dad and Margaret.  It was the first time I’ve seen her since the accident.  I wasn’t sure what to expect so I prepared myself for the worst.  She is still a dear sweet woman whom I adore; but she had no recollection of meeting me before, or knowing anything about me.  I didn’t expect her to, so I wasn’t disappointed.  I was pleased that she remembered Stuart was here last month, that was nice.  She may not remember that tomorrow, but she remembered it today.  We had a pleasant lunch, then it was time for us to leave and she became agitated.  She is convinced they are trying to poison her.  You see, she doesn’t like to take her medication, so they put it in applesauce to give it to her, but she tasted it.  It was that taste that made her start believing they were trying to poison her.  I’m told she calms down fast and she won’t remember that, but it affected me.  She was very happy for the rest of the visit, she talked and talked. She made the comment that she likes everything.  When I simply smiled when she said, “No really, I just like everything.  Well, I don’t like someone right up in my face waving their hand, but mostly I like everything.”  (this was before the poisoning episode)

She is so in love with John (Dad).  When he walks in she lights up, and runs over to him and hugs him and kisses him.  It’s so wonderful.  They are still so much in love.  He is a very good husband.  Tonight Stuart was telling me that they don’t know if she’ll continue to remember him.  She has lost most of her short term memory and it keeps encroaching on every day.  She will start forgetting those she has not for the least amount of time; Dad and she have only been married for 7 years so she could start forgetting him in the not too distant future.  The longer she has known someone the longer she will remember them, she may not remember their correct age; for example she may think her son is her husband, because if fits with she is in her memory.  It makes me sad.  They are so much in love.  Dad once told Stuart that as much as he loved Stuart’s mom, Margaret was his soulmate; it breaks my heart that they had so little time together.

Margaret does seem to enjoy the time we spend together.  She just talks and talks, about anything and nothing, but some of her stories are quite entertaining.  I enjoy talking with her, my only problem with that is that I can’t hear a lot of what she says; I follow her body language and mimic it, that seems to be enough for her, but I really wish I could hear her better.  I don’t know if I can be with her alone if I can’t hear it well, I may not understand that she needs assistance before she gets agitated.

I started writing this last week, but we had a time getting out internet connected, the cable company isn’t in much of a hurry to send technicians out to a house to get them turned on so I couldn’t finish it.  For some reason, the WordPress app wouldn’t let me do anything on my own blog.  I couldn’t even comment of a post.  And the last reason I haven’t been able to post is that I haven’t been able to type very easily.

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getting the steroid injection in my wrist….at least my doctor was super cute.

Right before we left my right wrist started hurting and my thumb was partially numb.  Just exactly like how the De Quervain’s tendinosis in my left wrist.  That is pretty strange; it’s not acutually that strange for people who have had it, but it’s alson normally found in women who have babies.  The act of repeatedly picking up a child can cause it, but me?  Why am I getting this?  I have no idea what I’m doing, I thought I’d figured out what cause it in my left wrist, but now I’m not too sure.  Well, I got a shot in it on Wednesday, crossing fingers it works and I don’t have to have further treatment.  So that’s the reason’s I haven’t been posting about this adventure.  Well those and being incredibly busy.

I’ll write more about where we are living now soon.,,,With more pictures.

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It takes how long?

When you have a chronic illness chances are it’s an invisible illness, others have no idea what you have to do to get through the day.  With my illnesses some days I look sick, some days I can’t get out of the chair and you can tell, I’m sick.  Other days I can get it all together and don’t look sick at all.  It’s those days that confuse people.

I’ve learned that it takes me longer to do things than it does the average human.  There are many days that I can’t accomplish anything, but let’s not talk about those days.  I want to talk to you about the days I am able to do a few things.  The days I appear normal.

Yesterday I started to do the dishes.  The dishwasher needed to be emptied, and there were dirties that needed to go in.  For a normal person this would just take a few minutes.  I started to unload the dishwasher, I got the top unloaded and put away, then I had to rest.  I came back after a bit and started on the bottom, I put away the silverware, and needed a rest.  After about 30 minutes I went back and finished up putting away the rest of the dishes, and started loading up the dishwasher.  While loading it up I took 2 breaks.  Therefore, at the end of this it took me over 3 hours to unload and load the dishwasher.  At this point all I could do was make myself a cup of tea.  This was the end of my ability to do chores for the day.  No one would think that doing the dishes took 3 hours out of my day.  I must say that I’m okay with this.  I’m grateful I can do the dishes at all.  I only wish I could do them every day.

Last week I had an hour to take a bath before a TV show came on that I wanted to see, I thought that would be plenty of time.  Boy was I wrong.  I need to have help getting in and out of the tub because of my balance, that takes a little bit of time, but not much.  I started to take a bath as normal, a little rushed because I wanted to make sure and get out in time, but just a normal bath, then I got dizzy.  Very dizzy.  Try getting a soaking wet 135 lb woman out of the tub when she’s very dizzy, it’s just not that easy, but it’s something that happens a lot around here.  (the reason I am dirty a lot of the time 😉  Getting me in the tub, taking a bath, and getting me out of the tub, took over 2 hours.  Luckily I did have the DVR set for my show.  I know that getting dizzy in the tub is a fairly regular occurrence so I should never put a time limit on it.  But how many people do you know that can’t get a bath done in an hour?

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I don’t look sick.  Taken at a wedding, July 2017

Then there are days when I seem to be able to go non-stop.  Recently I had a weekend like that.  We went to a wedding a couple of weeks ago.  On the day of the wedding, I had my hair done, then I rested a little bit, then we had the wedding at 3pm.  The wedding didn’t actually get under way until about 4pm.  Luckily, I was just sitting talking with people.  After the wedding, we had the reception to attend.  On the walk over, I had a mini vertigo attack, because of my vertigo we didn’t intend to stay long and we had planned to have dinner with my sister and her husband.  Then I started seeing people I have known for over 40 years, and adrenaline took over, about 2 hours later, we were finally leaving  (know that all I did was sit and talk with people).  We went back to our hotel, changed and were off to dinner.  We were finally back to our hotel around 9pm.  I was going full out, all day long.  Boy was I beyond tired.  Not only was I exhausted from the simple physical exertion of it all, and the mini vertigo attack I had at the church, I was completely off kilter from trying so hard to hear all day.  (I did find out that my lip reading skills have improved dramatically.)  Of course, I couldn’t sleep due to painsomnia (insomnia due to pain).  There was only 1 station on the TV that would show captions (yeah, what was up with that?) so I was stuck for hours, watching something dumb, I can’t even remember what it was.  This trip was very enjoyable, I wouldn’t trade it for anything, but boy did it take a lot out of me.  It took a week or more to recover fully.  For a “normal” person they could have made the trip in one day.  It’s about a 3 hour ride (I can’t drive).  We could have gone down for the wedding and come back that night, if I were a “normal” person.  Instead we went down Friday night, so I would be well rested for Saturday, and we stayed until Sunday so I could recover as much as possible before the ride home.  I had a lot of support for this trip or I never would have been able to make it.  My neurologist (headache specialist) sent me home with a series of shots to be given over the weekend to help with migraines and cluster headaches, both of which have increased dramatically recently.   The specialist I’ve been seeing for my back called in extra meds for me for the weekend.  If these two doctors had not increased my treatment for the weekend, I would never have been able to go and enjoy myself.  I will be forever grateful.  While there my sister took me to have my hair done, she made sure I could understood everything, even though I couldn’t hear in the salon.  She then came back to our hotel and ironed hubby’s shirt.  Without this help, I don’t know if I could have made it.

To summarize: We don’t always look at bad as we feel, we often need to rest more often than what is considered “normal”, sometimes we have to have a lot of support to do things that “normal” people do without thought….and that’s okay.   We normally appreciate things much more than “normal” people.  We care deeply.  We can still live a full life, it’s just different than a “normal’s” life.  and that’s more than okay.

 

 

Walk4Hearing

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How I hear. Bilateral cochlear implants. Cool Huh?

The Hearing Loss Association of America‘s Walk4Hearing in North Carolina is coming up soon on October 15th, and I’ll be walking. (fates willing)

Did you know that approximately 48 million people in the United States have a hearing loss? The goal of the Walk4Hearing is to increase awareness about the causes and consequences of hearing loss and to raise funds to provide information and support for people with hearing loss.

This is my first year participating in the Walk4Hearing and I’m excited and nervous. I’m excited to be surrounded by people who live with hearing loss, like me; our friends and family who support us, audiologists, and advocates…everyone coming together to make a difference. I’m nervous because ….well golly, this is one place I’m not nervous because I can’t hear. That’s pretty amazing. I will be using my walker for balance and safety. I am a little nervous that I might have a vertigo attack, but hubby will be with me, I’ll take all the precautions I can, and if it happens, I’ll deal with it.

I’m pushing myself by participating in this walk, it’s important to me. It’s hard for those with normal hearing to fully comprehend the challenges that one faces with hearing loss. It’s hard to imagine the disorientation that comes from the absence of sound, the concentration required to communicate using both visual and auditory clues, and how people and things can come up from behind you with no warning.

This year, the Walk4Hearing will include a #HearingLossChallenge. Walkers will have the opportunity to wear earplugs during the walk to experience what hearing loss is like first hand. The earplugs will be provided free at the walk sites. Even though, the experience isn’t completely accurate, it will give the wearer a taste of what it’s like to live with hearing loss. Photos and reactions can be shared on social media using the hashtags #HearingLossChallenge and #Walk4Hearing.

I am hoping you can support me in my efforts to raising awareness about hearing loss. Your tax-deductible gift will make a difference in the lives of many!

You can make an online donation from my personal page (click the personal page link here). Any amount, great or small, helps in the fight to make hearing loss an issue of national concern. I greatly appreciate your support and will keep you posted on my progress.

(please visit Sheri Eberts blog Living with Hearing Lossto read about her experience with the Walk4Hearing. I have shamefully used many of her words above, with much gratitude.)

The Hearing Loss Association of America® (HLAA), founded in 1979, opens the world of communication to people with hearing loss through information, education, support and advocacy. In addition to the Walk4Hearing, HLAA publishes the bimonthly Hearing Loss Magazine, holds annual conventions, hosts online learning with the Hearing Loss Support Specialist Training, and more. HLAA has chapters nationwide to support people with hearing loss. The national headquarters is located at 7910 Woodmont Avenue, Suite 1200, Bethesda, MD 20814. Phone: 301.657.2248.

#HAWMC- Day 1 What Drives You?

hawmc_background_coverToday marks the beginning of WEGO’s Health Activist Writers Month Challenge.  I will attempt to follow each prompt every day to bring awareness to chronic illnesses.  Be sure to check out WEGO’s Facebook Page for more blog posts during this month.  Don’t forget you can always follow my posts on my Facebook Page too!

Today’s #HAWMC prompt is:  First, let’s get to know each other! What drives you to write about your health? What do you want other Health Activists to know about your condition and your activism? Reflect on this for 15-20 minutes without stopping…GO!

What drives me to write about my health?  Since the prompt says to write for 15 – 20 minutes I’m going to write stream of conscious, if I repeat myself or have grammatical errors please forgive me.

I started writing about my health for the same reason I still write about it, to help others who feel alone when faced with the same conditions I have been faced with.  I’ve found support through my blog and I hope I give the same.

I try to bring awareness about Meniere’s Disease, Chronic Migraine, and Bipolar Disorder and let other’s who have these diseases know they are not alone.

I also have other illnesses that I mention along the way.  Like Degenerative Disc, Hypothyroidism and others.  I’ve also recovered from Avascular Necrosis in my hip and like to give others with this condition hope.

What drives me is my illnesses and my love for others.  My compassion for others and myself.  I write because it helps me and in turn I hope it helps others.

What do I want others to know about my conditions and activism?

Well there’s an awful lot to know about my conditions, as there is more than one condition to cover.  I’ll pick just talk and see what comes out.

Meniere’s Disease – Meniere’s is diagnosed by the symptoms, there is not definitive test for it.  The symptoms are: Random attacks of Vertigo, Fluctuating hearing loss, the feeling of fullness in your ears, and tinnitus.  If you have all of these symptoms and they have ruled out other illnesses then by process of elimination they diagnose you with Meniere’s Disease.  The progression of the disease can be different for different people.  It is normally only in one ear, it can attack both ears. I have it in both ears.   It used to be thought that the disease would “burn” itself out.  As the patient lost more hearing the vertigo got better, until there was a leveling out period where the patient no longer has vertigo.  As can be seen with me that is not necessarily the case.  I am deaf now and still have vertigo often.  There is not sign of a “burn out” for me.   I do want everyone to know that this disease does not progress the same for everyone.  just because I lost my hearing does not mean other people will, I still have vertigo, but that doesn’t mean other people will.  I’m in a very small minority.

Bipolar Disorder – I want people to know that people aren’t crazy when they have this.  Being Bipolar doesn’t stop me from living a normal life.  I want people to know that not everyone is the same with this too.  I am lucky.  With medication and therapy I am doing very well, and have been for years.   Others are not so lucky.  Medication does not work for everyone. Everyone with this disorder has to work hard.

Chronic Migraines – I want people to know that migraines are not just a headache.  They are so much more than that.  They make you sick all over.  Having a migraine for more days during the month than not can put a huge damper on life.

It takes a lot to face the world with a smile on your face when you are faced with these illnesses and more, but with the help of mindfulness and a support from those who care about me I get by better than I could ever imagine.

This is some of what I want you to know about me and my illnesses and why I write.  I hope you will join me on this month long journey.  Wish me luck that I can accomplish this goal of posting every day this month!

Making friends?

I keep being told by my therapist that I need friends.  People I can spend time with, not just friends I text, email, message, blog with…..   She wants me to have local friends.  We’ve lived in this area for over 2 years and I don’t really know anyone.

My question for all of you is, How do I make friends?

I’m chronically ill, I can’t drive, I don’t go anywhere without my husband, I have a very hard time hearing in public places….

Where do I meet people who are willing to get to know me through all of those obstacles?

I don’t go to church.  I did look for a Buddhist temple in the area and there are a couple of places, but they do not practice the type of Buddhism I do.  I don’t think I’d feel comfortable there.  It’d be like a Fundamentalist trying to go to a Catholic church, they are both Christians, but they are very different.   (well it might not be that different)

I don’t work, so I won’t meet people there.

I don’t have kids so I won’t be meeting people through my kids.

I looked for a support group where I’d fit in, I can’t find anything.  Before you suggest it, no I’m not going to start one, I would not be able to be reliable enough to do so.

I really think it would be best if I met people who have chronic illnesses, I think they would be more understanding of my “eccentricities” 🙂

My husband works in a small office where there isn’t anyone to really become friendly with.

I’ve met the neighbors on each side of me, one is an elderly couple who prefer to keep to themselves, the other is a family who are always busy.  We don’t really fit in with either.

So, any ideas?   I’m not adverse to meeting people, I just don’t know how.

My  biggest problems are: I can’t go out alone, can’t drive, and my hearing issues.

Really, I’m looking for suggestions.  Any body got any??

Confessions of a Chronically Ill Deaf Woman

confessions

I have some confessions that I thought some might relate to, they can be a little embarrassing to me, but I’ve decided to tell all.

I envy people who look sick.  It’s just hard to be as sick as I am and look completely normal most of the time.  Others have no idea what I go through.  I know on the outside I appear normal.  I know it’s hard for people to understand why I can’t do things.  Sometimes it’s hard for me to understand.  Sometimes I feel if I looked sick it would be easier.

I’ve played the sick card.  This is very hard for me to admit.  There have been rare occasions when I simply haven’t wanted to do something and I’ve said I was too sick.  Normally that is something that would make me sicker.  Something I might want to do, but I know if I do it I’m going to pay the price afterward.  So instead of trying to explain this it’s easier to just say I don’t feel well enough to go in the first place.  Now I do admit there have been very rare occasions that I simply have not wanted to do something and said I wasn’t feeling well enough.  I can think of one.  There was an outing with Stuart’s work and I knew I’d feel uncomfortable around all of those people so I played the sick card.  Stuart went and that was really all that counted, but I felt very guilty about saying I was too sick when I really wasn’t that day.

When I get mad at my husband sometimes I’ll “take my ears off”, ( I’ll, take off the processors to my cochlear implants) so I can’t hear him.  Yes when I get mad I act like a child.  “I can’t hear you, lalalala”.  I’m sure it infuriates him.  I’m acting like a child.  And at the time, I don’t care.

I’m addicted to the internet and I don’t feel that is a problem.  I am basically housebound.  I can’t leave without someone else.  I rarely go anywhere other than to the doctor or the occasional outing, that is normally just errands.  I don’t have friends close by since we moved.  Even before we moved I had very few that I saw on a regular basis.  I keep in touch with my friends through the internet.  I read, I write, I research, I email, even my TV is through the internet.  Some people may think I spend way too much time on the internet, I don’t think so.

I really don’t miss working.  If I’d had the dream job I’m sure I’d miss working, but truthfully I didn’t like my job.  I dreaded going to work.  I don’t miss it at all.  I don’t like the fact that I can’t work.  But missing my job?  No not at all.

I care what people think.  I keep being told, “who cares what people think?”  Well I do.  Why?  I have no idea.  I don’t like this part about me, but I really care about what people think.  I don’t want people to think I’m lazy, that I’m pretending to be sick, that I’m a hypochondriac….  Yet I don’t like to go out looking bad.  I don’t want people to think I can’t take care of myself.  I don’t want people to think my husband isn’t taking care of me.  I care what people think when they come in my house.  (as if so many people come in my house)  I care what people think when they ask me what I do and I can’t give them an answer.  I don’t “do” anything.  I even dress up a bit just to go to the doctor.  Especially my therapist.  She is a lovely woman, so put together, and I want to look all put together too.  So I actually dress up a bit to go to my therapy sessions.  How weird is that?

I often don’t know how to talk about anything other than health issues.  My life revolves around my health, and most of my friends have chronic illnesses and their life revolves around their health issues so we don’t have a problem talking.  But when I meet other people, when I need to make conversation with people outside of my chronic illness circle, I’m a bit lost.

Often I have no idea what someone just said to me, so I fake it.  When there is small talk being said and I miss part of it because I just can’t hear, I nod and smile a lot and hope I’m not smiling when someone just told me something sad.  It is way too hard for me to constantly ask people to repeat themselves, especially in a setting where I know I probably won’t be able to hear them anyway.  Often when I’m with Stuart I just stand there and smile and let him deal with the conversation.  It’s hard on me, not being able to participate, but it’s harder to struggle through it.

I love my recliner.  I never thought I’d be a middle aged woman who spends most of her time in her recliner, but I do.  I love this chair.  I got it when I got my hip replaced, I don’t know what I did without it!  I get through my vertigo attacks much easier in the recliner, I don’t have to lie all the way down, I don’t have to sit all the way up, it’s just so much easier.  It’s my comfort spot, it’s where I write, read, watch TV….and that’s okay with me.

I don’t shower of bathe regularly.  Taking a shower or bath is an ordeal.  I have a safety issue with both.  Taking a shower is harder for me because I often get vertigo when the water hits my head, even using a shower seat with a hand held shower head doesn’t solve the problem.  Taking a bath is easier, but it’s much harder to get in and out of the tub.  I’ve also had vertigo start with me in the tub a few times.  I have to have someone with me when I shower or bathe.  It takes a lot of energy out of me.  I often have to lie down and rest afterward.  I never thought I’d say that I’m lucky I have dry skin and hair but since I do it’s not that big of a deal if I don’t wash my hair for a couple of weeks.  No, I’m not gross, I do wash up.  But taking a full on bath, takes a lot.

Sometimes I’ll wear the same “clothes” for days.  When I don’t feel good I wear the same clothes for days.  By clothes I mean a tee and shorts or sleep pants.  I will move from the bed to my recliner and back.  Who needs to change clothes?  Truthfully, I don’t think I could if I wanted to.  But sometimes I don’t change clothes simply because it’s easier.

I’m hard to live with.  I get grumpy, grouchy, moody, bitchy….but I’m also loving, happy, joyful…. Let’s just say, I’m confusing.

 

Are there confessions you have?  Want to share?  Do you share some of mine?  I’d love to hear!

(photo by and of W. Holcombe.  All rights reserved)

Stop apologizing

I don’t often reblog a post from so when I do you know the person said something I think is important.  What Denise, from Hearing Elmo talks about is important.  We have to stop apologizing for our “normal”.  Please check out her site for many more important topics, Denise is an amazing advocate.

The other day my iPhone died before I was getting ready for bed. I was a little shocked, because I rarely have it just “die” on me. The new ones have batteries that last much longer – even if you are a frequent user of the device like I am. I stood there with dead […]

via My iPhone Lasts Longer Than I do — Hearing Elmo