Tag: Meniere’s Disease

Short chat….Yesterday, Today, Tomorrow.

On By WendyIn Chronic Illness6 Comments

I don’t have the stamina to be on the computer for long today so we’ll have to make this chat a short one.  Go ahead, pour yourself a cup of tea, grab a biscuit (cookie) and let’s have a talk shall we?

Oh wouldn’t it be grand to meet in a coffee house, or even my house and have a beverage and just chat, like I used to with friends…go out to lunch….play with their kids…go shopping…ect.  But that was my yesterday.  Do I want that life back?  No.  I want to do some of the things I used to, but I like me more now.  I know me better, and I like me more.  I used to speak and feel I had such conviction about something, then I’d talk with a different friend and find I didn’t feel the same when I was with them.  I would get caught up in the gossip chain, or maybe even start one, I was moody, people would hurt me without knowing it….or maybe they did, doesn’t matter.  I took too much to heart, and really didn’t know myself well enough to have a true friendship.  At least I feel that way now, after all, there isn’t really anyone out their any more.  And I’m sorry, but Facebook does not a friend make…not without a lot of effort off Facebook too.  But that was many yesterdays ago.

Oh boy, already not a short chat.  Guess I needed to have a heart to heart. 

Just about me…..I’ve had a LOT of severe disequilibrium and minor vertigo attacks.  By a LOT, it means I’m feeling disequilibrium most of the time, unless I’m very, very still.  The vertigo, pretty much every day, often more than once.  But if I can get the Valium and Phenergan in fast the vertigo attacks don’t last long.  I told Stuart I feel like everything is so surreal.  He didn’t understand, maybe one of you will.  The world starts to move and my brain seems to slow down.

Last Thursday, I was excited about getting my Cochlear Implant processors and getting activated.  I got up and started to get ready.  I brushed my hair, and started to get dressed.  I put on one article of clothing, and turned around too fast.  I did a nice twirl in the room and tried to get close to the wall or bed, but I knew if I fell toward the bed from my distance I’d hit the foot of the bed hard.  So I turned and hit the floor, twisted my left wrist a little, kind of did a flip and BAM!  Flat on my back!  First thoughts, “Stupid! I know better!” “Ouch! My head hurts!”  Then Stuart rushed in.  “I fall down” (sad face)  He agreed I fell down.  He asked to help me up, I told him my head hurt and when I tried to move it my neck hurt….I thought I’d just lie there for a bit.  He was cooking breakfast so I shooed him away so he wouldn’t burn my breakfast. (smile, I just didn’t want to worry him too much and needed time to check things out).  I rolled over, and climbed carefully back on the bed.  I was so sore, already.  I knew I couldn’t go to the audiologist to get my processors, the appointment takes about 3 hours, no way could I go and be a good patient.  So we had to postpone……AGAIN.  So, today I’m recovering from Whiplash!

Tomorrow, I have my rescheduled appointment with the Cochlear Implant audiologist.  This is actually an administration day for her, but she wanted to get me in as soon as she could.  (how sweet is that?)  Barring no strange incidents, or my normal horrors, I will be getting my bright orange processors tomorrow!  Then I’ll hand out candy for Trick-or-Treaters.  I hope I have the energy, hubby will be in class.  Halloween is my favorite holiday, so good things will happy, I just know it!!

There it is my short chat for today.

Perhaps next time we can have cake.  (gluten-free, of course…really I make a really good cake!)

PS.  I just read this post and realized it only pointed out the troubles I’ve been having, there is much more to a day than that!  There is much I’m grateful for, and some wonders I’ve accomplished.  I’ve been going down stairs almost every day!!  After a doctor’s appointment I went out to eat with my husband!  I’ve been reading a lot and have enjoyed several books I found free on Amazon for the Kindle that I normally wouldn’t have read.  I’m sooooo thankful that Stuart was able to fix my Kindle!  I missed it so much when it wasn’t working.

There is much more…oh like a bath all by myself!  A lot of deep breathes and positive talks to do that one, of course I had vertigo within a couple of hours, but not in the tub!  Victory!!!

Just wanted to end on a more positive note, after all, these are the things I think more about each day.  The rest is just stuff.  I would compare it to having a job that takes up so much of my time and I don’t enjoy it, but it’s stuff that has to be done.  Then there is the rest of my life.  Walking up and down the stairs one foot at a time, with no help!  Cuddling with my hubby!  Writing letters.  Having heart to heart “talks” with my friends…..amazing how I haven’t actually met most of these people I consider my dearest friends.

I love you friends!

 

Cochlear Implant #2…a short update

On By WendyIn Chronic Illness, Cochlear Implant15 Comments

I haven’t been on the computer much since my surgery.  I simply do not feel well shortly after I get on, I get all hot and dizzy…so no computer for me.  (please note, I didn’t read this after I wrote it, I am just too tired, please forgive any strangeness, grammatical errors, or anything that is just wrong.)

However, I did want to update all as to my recovery.

Incision the Day after surgery,
Day after surgery,  Sorry it’s not cleaned up more, but I hubby just took this picture to show me, and then we forgot to take another one.

Had the Cochlear Implant surgery on the 25th.  The incision looks great.  It still hurts a bit, not terribly bad, but annoying (mostly it’s just itching now!).  The tinnitus has been going Crazy!!  As I mentioned in an earlier post prescription pain relievers have been making me itch, so I’ve had to try different things.

I tried Arnica Montana (most just call it Arnica) in the oral form.  I’ve used the topical gel many times with much success, but I’ve never tried the tablets.  Before surgery we checked to make sure it wouldn’t be adverse to my medications, but didn’t see where it said not to take it if you are allergic to ragweed.  (guess what my number one allergen is?  Ragweed!) So I took it for a day and my muscles seized up.  I couldn’t even sit up without help.  So no more Arnica for me.  It took about 2 days for me to not hurt all over.  Kind of ironic, I used it to help with the pain and ended up in more pain.  But, hey, it took my mind off of my ear!

I am able to take an NSAID by injection.  I can’t take them orally because they have caused me a lot of stomach troubles.  So I have Toradol injections.  Unfortunately, I can only have 2 a week.  But they do help, a lot!  I use this for my most intense migraines too.  We decided to try 1/2 a shot to see if it helped, and it did!  Yay!  So I was able to have more shots just at a lower dose.  This helped a lot, especially when I couldn’t sleep.  But really, over all, I haven’t been in much pain, just uncomfortable with my glasses.

The vertigo started about 3 days ago.  I don’t know what’s going on really, I’m sure it has to do with the fluid from swelling and it going down…or something.  It’s not the normal Meniere’s vertigo.  It’s often positional, so if I lie very still I don’t spin.  I’ve also been having this strange sensation as if I’m having vertigo, but I’m visually spinning.  I feel my body/head moving, but I’m not moving, nor do I see anything moving.  It makes me just as sick as vertigo does.  Strange huh?  I’m still so grateful I was able to get Phenergan injections that hubby can give me.  I think it has saved me many times.

I was supposed to be activated and get my processors on the 8th, but the vertigo would not let me.  I thought I probably could have made it through the doctor’s visit, he is just checking the incision site, but going through the audiologist appointment would have had me on the floor!  That is a LONG visit.  Not only does she actually turn things on, she has to adjust things as I tell her how the beeps sound.(called MAPping for those with CI’s, or those who are just interested).  Then I have to have a hearing test, not just a regular hearing test, but a very long and detailed test.  I get so tired and worn out every time we do this I often have an attack that evening, so going there with me already feeling wonky in the head, would not have been wise.

Unfortunately, that means that I may have to wait until the first week of November.  We/They are trying to work it out so I can get in sooner, but the way I’ve been feeling I wouldn’t say it will be too soon anyway.  The office is looking to set up the appointment with my doctor on one day and then the audiologist on a different day instead of trying to do both in one day.  This should be easier to schedule.  Plus, it should also be easier on me.  At Duke they normally try to schedule as much on the same day as possible because so many people come from far away to be seen.  We often have to remind them we just live about 10 minutes from there.

So that’s my news for now.  I’m tired a lot, sleeping a lot…..guess I’m healing.  (oh who am I kidding, I was sleeping a lot before the surgery!)  Catching up on some reading, and watching TV.  The new season of Rupaul’s Drag Race just started!  (actually, they are showing season 1 again, it’s a hoot!)  If you asked me last year if I watched any reality shows I would have said no, but I love Rupaul’s show! after all……

“If you can’t love yourself how the hell are you going to love anyone else?…..can I get an Amen?” – Rupaul signs off each show with this quote!

Round and Round I go…where or when I’ll stop nobody knows…

On By WendyIn Chronic Illness, Cochlear Implant, Meniere's Disease6 Comments

I feel like I haven’t been here in ages, and I probably haven’t.

I have to make this short, but wanted to give a little explanation as to why I’ve disappeared…when I have so much to say!  And give a tiny update.

On a Carousel at the NC State Fair
On a Carousel at the NC State Fair – I’m on the left, Jenn in on the right, and Stuart is in the mirror.  As you can tell, this photo was taken before I started having Meniere’s symptoms so often.  Taken Fall of 2005….I think.

I’m having a LOT of VERTIGO!  Luckily it’s not the severe- losing control of all bodily functions for hours -kind of vertigo.  It is much slower, and less horrific.  But it’s happening almost every day, often more than once a day.  I’m getting to the point where I’m terrified my worst fear may be realized…..at some point it won’t stop.

I am so happy I am handling it so much better than I used to.  I used to freak out even if it was a mini attack.  These attacks are more than a mini (one that happens for just a few minutes), but not a full blown severe attack.  Hard to explain, but I have a routine now that really helps.  When it starts, I take my meds, I get ice and put it on my chest or wrap it around so it hits my back and chest (I always get very hot and if I can cool down fast it helps).  {I keep these things close when I’m alone, when Stuart is home he helps, but I am always prepared.}Then I put something close I can focus on, usually a cup.  I hold it with my hand…and close one eye, that seems to help a lot….I tell myself….actually I think it is important to say this out loud if you can.., “This is not real, you know your hand is not really moving, so nothing is moving, This is not real…this is not real….”  I also try to control my breathing.  Normally, I start breathing short and fast, now I try to take deeper breaths and tell myself to calm…remember, it’s not real!  At times I chant, Stuart will chant with me…it’s very soothing, even when my body is telling me that nothing is as it should be.  I’m also very lucky that I now have Phenergan shots at home.  My otologist (for those who may not know, an ENT is an otolaryngologist – study of Ears, Nose, and Throat….my doctor just specializes in Ears…the oto- part.) couldn’t give me a prescription for injections, but my Migraine doctor can because she is a pain specialist.  The Phenergan shots help stop the vomiting, and that’s more than all right with me!!!  (I do need them when I have migraines too)  I do still get nauseous but I’m pretty sure that’s mostly because the acid in my tummy gets all churned up due to the stress.

OK…so that’s why I haven’t been around.

Now….why I might not be around…but I might….

My Cochlear Implant surgery for the right ear is next Wednesday, the 25th!  I’m not sure how recovery will go, we know that I can have the same surgery many times and each recovery is different.  I’m really hoping that this one is easy because I’ve developed an intolerance to narcotics.  So, no pain pills for me to come home with.  My husband has a call in to my migraine doc to see if there is any options.  I do have some meds from her for migraines but I don’t want to use those without her telling me exactly what to use and how often.

Depending on my recovery, I may be on here a lot, or I might not be able to be on here much at all.  Hopefully, I can post again before then.

My senior quote in high school: “By the time you figure out what makes the world go around, you’re too dizzy to care”   hmmmmm, prophetic?

Things on my mind….

On By WendyIn Chronic Illness, Cochlear Implant4 Comments
Got Ewe On My Mind by LoopyDave on DeviantArt.com

Please note, this post is just random thoughts I’m having and want to get out of my head for a bit.

I’ve had a lot of time to think recently.  I haven’t been able to type a lot because I hurt my shoulder.  I fell, again.  This time I was going to the bathroom in the middle of the night.  I was not balancing very well, but that’s normal.  I started to fall right at the toilet and fell into the wall.  My shoulder took most of the weight.  So I’ve tried to just do less with it, but it got worse.  So I had to do much, much less.  Now it seems to be getting better.

So if I haven’t been commenting on your blogs, it doesn’t mean I haven’t been reading, I just haven’t been typing much.  I read them in my email on my phone, it’s hard to comment on my phone, and that would hurt my arm just as much, I think.  So in the wee hours of the morning when I’m up coughing, I’m probably reading your blog, and thinking of You.

Stuart has started school.  I’m proud of him.  I’m also scared and stressed out.  I don’t want to live poor again.  Not that we are rich by any means, but I used to live paycheck to paycheck and often ran out of money.  I remember many times living on peanut butter and jelly sandwiches for weeks to get by, I’d also accept dates from guys I knew I didn’t want to date just so I would get a good meal.  Stuart has never wanted for anything really.  So I’m much more stressed about it than he is.  In my heart I know things will work out.  But, in my gut, I’m nervous.

I will be going to Duke’s Asthma, Allergy, and Airway clinic on Friday.  Please everyone think about me and send good thoughts that they will be able to stop this dang cough.  I’ve been coughing every day since mid October…yes that’s last year!

On September 3rd, my hubby and I will be celebrating our 9th anniversary.  We can’t really do anything but we’ll be celebrating that we’ve been through so much in our 9 years of marriage and are still madly in love.

The second week of September I go in for Pre-Op for my second cochlear implant surgery.

The surgery is on September 25th.  I don’t know why, but I’m more nervous this time than I was the last time.  Before I was more excited, now, I’m a bit scared.  I shouldn’t have, but I expected a lot from the first CI, so this time I’m not expecting anything.  Which is silly, that’s what I have now.  No hearing in that ear.  Things have to be better when I can hear out of two ears.

Well, I have much more on my mind but I don’t have the energy to write more right now.  And you are probably tired of reading my tirade.

What’s on your mind today?

Filing Disabilty

On By WendyIn Chronic Illness, Disability4 Comments

We finally filed the paperwork for disability, and two days later I got a packet wanting more information about how my illness(es) limit my activities.

This entire process has taken so much out of me, it is so depressing.  I do not think of myself as being so dependent and disabled as i really am.  Writing it out is taking its toll on my psyche, and making me very scared about hubby taking on more responsibility outside of the home.

I was just filling out the papers and it asked what I could no longer do because of my illness that I used to do.  It gave me one line.  Really?  One line?  I realized I could probably write a book!  I listed some of the most important things and then said there were way too many things to list in that area.  I should probably add a new page.

When I think about it, the question should be, what can I do now that I could before.  I used to do be able to do more than I do now.  Now, I spend most of my time in bed.  That needs to change, even if I just go to the couch.  But the headaches are happier in a dark room, and my bedroom has been made dark, no other room is.  I can still type on the computer…well some days.  Some days, like recently, I’ve been having low-grade vertigo for days.  I have been having a heck of a time.  Every day I feel like I can’t move my head, things move, just not very fast.  In the evenings it gets worse, much worse.  (perhaps my Intracranial Hypertension meds need to be adjusted?…who knows.

The paper asked me if I have any unusual fears or behaviors.   Wow!  That got to me.  I actually had to admit my fears.  My fears that I will have an attack in public, my fears that an attack will hit any time (of course these fears are very justified).

The Bath by cristalart at deviantArt.com
The Bath by cristalart at deviantArt.com

But then there is the fear of taking a shower or bath…yes, I am absolutely terrified every time I have to bathe or shower.  I’ve had an attack in both places, I never feel steady in either place, and I’m simply scared.  I can’t be in either without someone (Stuart) in the bathroom with me, often in the bath or shower with me.  Washing my hair is the worst.  Having the water on my head, the temperature change, my head goes crazy.  It doesn’t seem to make a difference if my hair is long or short, it is hard.  At least when it’s long I can go longer between shampoos, I can just put it up in a pony tail and no one knows.  (luckily I have dry hair).  I normally wash up at the sink, and when I can’t do that because of my wonky head, I use wipes.  Still, I miss my lovely baths.  I used to relax and enjoy a bath.  I’d light candles, read, or just soak.  It helped my sore muscles and it made me feel pampered.  Now, I’m embarrassed because I’m a bundle of nerves and crying just thinking about the fact that I need to take a bath.

Many days I’m afraid to get out of bed.  I will wake up and I’m just not sure.  OK, I feel like I could, but do I risk it.  The last couple of weeks have been vertigo attack after vertigo attack, I hate to be unprepared for an attack, and it’s easier to ride out in my bedroom.

I’m not trying to sound pitiful.  I don’t want that.  I am trying hard to make things better, and I have had a few decent days.  Yes!  Celebrate the good days!!!  It has just been hard writing down all my limitations.  It’s also hard telling them, well sometimes I can do this, and other times I can do this, but most of the time I can’t do most of it.  However, I do hope it gets better.  I even said that in the paperwork.  I do hope I will be able to do more, but I know I will always have severe limitations.

Funny thing….when they asked what I used to do that I can’t do now, I just realized I didn’t say “Hear”.  Ummm, you would think that would be the first thing I thought of…but no..?

But that’s another story.

Under Pressure….CSF pressure Up – Down – who knows.

On By WendyIn CSF, Headaches13 Comments
The Headache, by Kamshubel (from DeviantArt.com
The Headache, by Kamshubel (from DeviantArt.com

In my last post I talked a bit about my headaches, and the Cerebral Spinal Fluid (CSF) being a bit out of control.   So let me give you a run down of how things have been going.  It will be pretty short, but at least I’m posting, right?

I had my Botox shots on April 7th, after about a week they started to really work.  My headaches lessened in both frequency and intensity.

Then I had the mishap with my medication on May 25th…or sometime around there.  I got all of that straight, and started taking my Diamox religiously.  I have a separate box just for it with 4 pills in each slot, then I can just look in and see how many I’ve taken at any given time.  All good there…at least I thought it was.

About this time I started my period and the weather went wild, storms every day, the humidity and barometric pressure all over the place – a perfect storm for a migraine.  For 2 weeks I had a horrible headache every day, sometimes my migraine meds worked, sometimes they didn’t.  The headaches kept changing intensity.  One moment I would be around an 8, it would drop to a 4, then back up again…all within minutes.  I was so confused.  Then one day about a week ago I realized my headache felt better if I was up, as soon as I lay down, BAM, the pain would assault me again.  This could only mean I had high pressure.  But I will admit I felt better than I had for a while, since I could get up and move around with relatively no pain.  I was still taking my medication exactly as prescribed.  The next day I awoke with very little pain, until I got up.  The world spun and suddenly I had a headache so bad I nearly blacked out.  Dang-it!  Low pressure again.  We are pretty sure I had a blow out, and my pressure dropped drastically.  So for the past week, I’ve been back on my back.  I need help walking to the bathroom.  Night before last I had an attack, it was different from most.  I did not have true vertigo, I constantly felt like I was going to, I had light vertigo for a while but mostly I only spun when I moved my head.  (Yes, it’s pretty hard to not move your head, especially since I had to go to the bathroom often during this time)  I was sooooo very nauseous.  I wanted to throw up just to make it stop.  I had spasms in my stomach like I was throwing up, but nothing came.  I could feel the gorge in my throat, but it didn’t come out.  This was very painful.  This went on for a little over 6 hours!  I took everything I could to try to stop it.  The nausea was so horrible.  I took the pills for it and suppositories.  Nothing was working.  And I would love to know why, when I have an attack (and I’ve heard others say this about Meniere’s attacks too) do I have to go to the bathroom so much?  My dear husband was so wonderful, but I kept getting so confused and I’d start to cry a little because I couldn’t understand him.  He was a dear about it all, and stayed up with me…he never left my side except to get me more ice.  (I forgot to mention, my Tinnitus has been going Crazy! So loud!  I had a piercing sound the other night and told Stuart my brain was having an Emergency Broadcast Signal!)

Now, I have super-duper headaches.  Today, it doesn’t seem to matter if I’m up or down, it still hurts.  My migraine meds are working a little.  (the Toradol shot did little to help, it’s usually magic in relieving my migraines).  I will see my headache pain specialist on Monday, hopefully this will be over by then, but I hope they can tell me what the heck has been going on!

On a better note: My asthma is much better.  I still have coughing fits, especially after I eat, but they are less frequent and less severe.  I’m so relieved about this.

My goal lately has been to laugh at least once a day.  Stuart’s a great help with that, he often makes me laugh….and Max is good for it too.  Right now he’s loving on my laptop so hard it’s about to fly off my lap.  It really is funny when he comes up to me when I don’t have my Cochlear Implant on and Meows at me.  I just see his little mouth open and close, no sound…Stuart says he does it often to me and I don’t even notice.  Poor Max. I promise he does get a lot of attention.  I think even more than I do!  haha

I’ve written numerous posts in my head, but haven’t been able to write them.  I have tried, but my brain gets confused or my head starts hurting too much.  I wrote one and tried to read it over and got so confused.  I am not reading this one, so forgive me if it repeats a lot, has a lot of grammar mistakes, spelling mistakes, or simply doesn’t make much sense.  You are free to ask me to clarify anything.

 

Leaving in a Mini-Van….

On By WendyIn Chronic Illness13 Comments

don’t know when I’ll be home again…  (yes I butchered the song, “Leaving on a Jet Plane”).

We will be leaving Tucson tomorrow, Tuesday, March 19th.  I’m very ready to get home and absolutely terrified of the trip!  Terror to the point of making me sick.  What to do? Oh what to do?  I know I’ll be alright no matter what.  Stuart will be with me, and he’s just wonderful at handling things when I’m not at my best.  I feel so guilty, Stuart has been packing everything and getting food ready, and washing clothes…..yes, he’s been doing everything, as I lay in bed with ice on my head in the dark, trying not to throw up.  My stomach hurts so bad I’m getting scared….do I have an ulcer?

OK…now you’ve seen me at my most anxious.  Not pretty is it?  Getting  here wasn’t that bad.  I had that horrible cough and every room we stayed it smelled way over fragranced.   I’m sure it’s because we have to have a room where pets are allowed, but it kills me!  But I didn’t get sick…I mean sick, sick….until we got here.  Then I had a horrific attack, in a car!  I think that is one of the things that is scaring me the most.

I am ready to go home, or at least I’m ready to leave here.  This was one of the most miserable trips I’ve ever been on.  Spending the little bit of time, I was able to, with my niece made much of the misery worth it.

I noticed something the last time I was with my niece, I push myself more when she is around.  I have a ball with her, but I do more than I normally would…and I pay for it for a few days, however, it’s totally worth it!  Her imagination is incredible!  I wish I was able to spend more time with her.

I have so many appointments when I get back to NC.  First I see my CI (Cochlear Implant) audiologist.  I may have mentioned on here that I haven’t been thrilled with my hearing with my CI…but I figured something out!  My CI audiologist adjusted things so it would work best with my hearing aid.  After all we hear better with two ears.  The trouble started when my right ear decided it was going to go defunk since we’ve been here.  I can barely hear anything out of my hearing aid…on good days…and it is distorted.  So I’ve just been wearing my CI…it wasn’t set up for that, so I’m feeling much better about that.  It does look like the second CI will be happening….after all, the hearing aid isn’t doing much.

Second appointment, my therapist.  Oh how I look forward to talking to her about this trip, what a let down.  Plus, I’m really over loaded with guilt lately.  I think I should say…GUILT!  Not that it’s justified.  Most of it is about things I can’t do anything about.  But one big issue I’m having is my grief over Sandy, and my guilt surrounding her death.  I simply will never know if I did the right thing, if we could have done more?  I simply miss her so much, there still has not been a day since she died that I have not cried.  On April 18th it will be a year since I lost my little girl.  (funny how we say “lost”, I didn’t lose her,  I know where she is…in a little brown box wrapped up in her favorite blankets with her favorite toys and a raw hide)  I’ll always love you Sandy girl….but I need some help dealing with the loss of my very best friend.

I’ll also be seeing my Otologist for a CI check up, and to discuss the possibilities of another one.

In May I’ll be seeing my headache pain specialist and get more Botox shots!  Yes I’m looking forward to that appointment, too bad it’s so far out.

Some time in there I’ll be seeing my GP, time for blood test, have her check out this cough thing and all that kind of stuff.  Including this horrible stomach pain.

So I’m all caught up…I think.  Not sure if I’ll be able to do anything on the computer while we are traveling.  I know we’ll have Wi-Fi in our rooms, .but don’t know if I’ll feel like looking at the computer.

 

A little update

On By WendyIn Chronic Illness8 Comments

I must apologize for being away so long  I feel like I’ve just been saying the same thing for so long.  I don’t feel good….blah, blah, blah.

Remember in my last post I mentioned having a sore throat?  Well I got Thrush, a yeast infection in your mouth and throat.  Thrush is often caused by a lowered immune system, and one often gets it when you have been on antibiotics and/or steroids a lot.  You may also remember that I mentioned…at least I believe I said it on here, that I wasn’t happy by how often I had been on both antibiotics and steroids since I’ve been in Tucson.  So…Thrush.  Not fun.  First it hurt a lot, was very raw and even looked like it was bleeding, then it turned white.  I had white spots all over my mouth, tongue and the back of my throat.  I decided to treat it more naturally instead of more medication.  I’m taking acidophiles, eating yogurt, and gargling with diluted hydrogen peroxide.  (this was the recommendation on the Mayo Clinic site).  It gets much better then it seems to get a bit worse again (however, it is much, much better than it was in the beginning), I finally put the connection between how my thrush behaved and how much I had to use my nebulizer….duh, it is a steroid too.  So now when I need to use the nebulizer I rinse my mouth well afterward, and gargle with the dilution of water and hydrogen peroxide.  I think this is going to work!!

My migraines have been much more present.  I’m also having much more vertigo.  I think most of it is Migraine Associated Vertigo (MAV).  When one has vertigo with Meniere’s it is rotational.  Lately I’ve been having vertigo that goes in all kind of directions.  Yesterday it was going down….well it’s hard to explain…the room kept sliding down and then it was if it went behind me and would come back around and slide down again.  Oh I was so sick…but I didn’t throw up…yay.  I did have a lot of acid reflux and burping…and running to the bathroom, which is very hard when you can’t walk alone, and my walker doesn’t fit through the bathroom door.  (thank you Stuart, you are the best).  With everything that has been happening, all I want to do is sleep.  One day I slept 18 hours…it may have been more I’m not sure, I’d wake up when I had to go to the bathroom, and when I was hungry…and that was all.  Many days I’m sleeping at least 15 hours.  I sleep about 12 hours a night (but I do wake up a lot), and take at least 2 naps.  It’s crazy!  I’m just falling asleep all the time.

I got a call from the doctor with lab results from my urine….they sent it off to a more advanced lab to see about an infection.  It said I didn’t have an infection.  So why did it hurt so very bad?  And yesterday it started hurting, just a little, again.  The doctor suggested I go to a urologist if the pain continues or comes back….I really don’t want to do that in Tucson.  We’ll be leaving in less than 3 weeks.  I think it will wait until we get home.  I’m still passing urine just fine and they found nothing abnormal in it…it’s just painful.  Yep, it will wait until I can see my doctors.

I was able to go to my niece’s birthday party on Saturday.  I was so excited.  But it was soooo hard.  It was in a very noisy place, so I started having a sound headache almost immediately.  I couldn’t understand what was being said.  I don’t think my niece has ever  been told about my hearing loss, but when I told her I couldn’t hear well in there she would motion for me to do things she wanted.  For example, she wanted me to play one of the games, she gave me a token and pointed to where it went in, then pointed to the button I was to push for the game.  It made my heart swell that she was so understanding of my needs.  It also breaks my heart when I have to say goodbye to her, every time she will start to cry…but I told her that we were not leaving for long, I’d see her again soon.  I hope I can.  Her parents aren’t very accommodating.

Let me rewind a little bit…the day before the party Stuart and I went to the mall to get our niece a gift from the Disney Store (she loves the princesses).  We didn’t walk around much, but my hips and lower back were in so much pain before we left, it was horrible.  It’s really hard to walk much when you have bad hips…and I haven’t seen my massage therapist in a long time.  So it was hard for me to stand much at the party.  I was happy I was able to go and do a little with our niece, but sad because I couldn’t do as much as I would have liked.

Each night before i go to sleep I think of a post I want to write, then the next day I often just can’t.  My migraines are so severe lately that I can’t stand to get on the computer…I can’t stand any light.  And of course when I have vertigo, there is no looking at the words on a computer screen…or anywhere else for that matter.  I hope to get many of those posts written soon…..here’s a preview….

  • Photos I haven’t been able to post.
  • Chronic Illness and Personal Hygiene
  • More about my other chronic illnesses…..

see you soon!

Being Sick when you are Chronically Ill

On By WendyIn Chronic Illness, Meniere's Disease, Migraines8 Comments

sickduckI’m sure it’s not the same for everyone who has a chronic illness, but for me, being sick on top of it is very hard to deal with.

First when you get sick, you often have to distinguish if your symptoms might be from part of your chronic illness or illnesses.  That can be very difficult sometimes.  I often feel like I’m catching a cold but it goes away in a few days, so for those few days I don’t know if I’m really “sick” on top of things or not.  I also have a lot of gastrointestinal issues due to food allergies and intolerances, it’s really hard to know if I have caught a bug or if I simply got a hold of something I shouldn’t have eaten.  This can be very disturbing sometimes, and it can make me less likely to seek medical attention for things until it has been going on for a while.

(a lot of this post is a recap of what has been happening with me the past few months.  Please feel free to skip this narration, I felt I needed a place to put it all in one place.  The major points I want to make are in bold at the bottom.  thanks for understanding…and if you read everything, you are an amazing person.  *smiles*   It took me three days to write this, between feeling icky and having a vertigo spell….so please forgive any errors…grammar, punctuation, spelling, even train of thought…yes brain fog is heavy these days.  thank you my dear friends.)

 

I’ve written about how sick I’ve been over the last few months….I mean really sick, on top of my chronic conditions…what a mess.  But I’d like to give you a run down of what happened and how I think I really goofed up and made this hang on longer than it had to.

The third week of October both Stuart and I caught colds, it delayed our leaving for Tucson by a week.  At the end of the cold I had this nagging cough hanging on, I’d heard from many people who live near us that they too had been suffering from colds that seemed to hang on for weeks with a cough, so I wasn’t so worried.  We started our trek across country, my breathing got worse, especially when we’d stop for the night.  I assumed I was having a lot of allergies erupting on top of everything.  Often our hotel rooms had a perfume smell, air fresheners, and one smelled like someone broke a bottle of cologne in the bathroom (we did ask to move from that room, but there was a convention in town and no more rooms were available).  We would have researched and found more allergy free accommodations for me, but those places would not allow cats, and Max needed a place too.  We do however always make sure we have a no-smoking room.

By the time we got to Tucson I was having a very hard time with the cough and breathing issues, but again, thought it was more allergies.  I felt that most of the stuff was coming from my nose…but I was wrong, that was only part of it.  Soon after we got here I started having severe vertigo attacks…Meniere’s was not kind to me.  I know the trip took a lot out of me,and I hadn’t been watching my salt intake as much as I should have..so I just thought my one of my chronic illnesses was in acute mode.  I still didn’t think I was really sick, sick.  (big mistake)  In the back of my head I knew I should go to the doctor for the cough, but I was so busy going to the doctor about my ears….and the holidays were upon us, it’s pretty hard to get in to a doctor as a new patient that time of year…so I thought I’d wait.  (again, not a good idea)  I continued to get sicker, no energy, coughing more, not being able to take a deep breath…..ect.  I did not get to enjoy one bit of the holidays (oh how I wanted a family holiday gathering, but I spent all of it in bed).  Finally, I told Stuart to, “Yes, please call and see if you can get me in to see a doctor.”  (he’d asked many times before and I said no, really I thought it was allergies, ragweed was in full bloom here when we got here, and the house we are staying in had been empty for a long time so lot’s of dust…I didn’t think the doctor would be able to do much more than I was.  Yes, I know…silly girl treating herself, but every spring I have severe allergies at home and I’m put on Flonaze, and 2 antihistamines.  So I did that, I was also taking an expectorant to break up the mucus and get it out….really all good things, and the doctor agreed, but I needed more.  And the Flonaze was causing me to have miserable nose bleeds. so that stopped.)

First trip to the doctor, (don’t you love a first trip to a new doctor, explaining all the reasons for your medications, all the things you have going on….ugh!  She actually said I was a very happy person for having so much going on with me.  I thought, well I could show the sad, depressed side of chronic illness all the time, but who would that help?  I may be ill, but I’m still a good person.)  I found out my minor Asthma (I haven’t had but a few attacks in the past 20 years or more, and only when I’ve been around strong allergens or perfumes.) has turned out to be pretty serious.  And I have Bronchitis…the Asthma probably got so bad because of the Bronchitis….and allergens.  So antibiotics, and a steroid….call in 10 days if not all better.  Stuart called after about 7 days because I was worse.  Ironic thing…my doctor had just gotten out of the hospital with pneumonia.  Actually scared me a bit, what if I had pneumonia…many of the symptoms were there, even the cold chills.  But then I laughed at myself…I had the pneumonia vaccine in May, I had to have it before I could get my Cochlear Implant. (that’s what I get for trying to diagnose myself with just the internet.  We can get some clues from there, but I’ve learned never to think it’s absolutely true for me.  Always consult a professional, or two.)  So I saw my doctor again on the 21st, 2 weeks from the first appointment.  Still not breathing well…ect, and my sinuses really hurt.  Diagnosis?  Still Asthma is going crazy, now bronchitis is considered chronic, and I have a sinus infection.   I was given a stronger antibiotic, prednisone (oh joy, more steroids), and I had a breathing treatment in the office with a nebulizer, for the first time in months I could breath, it lasted for hours, I was thrilled.  I was told if the cough was not much, much better in 3 days to call back and I would get a nebulizer for home.  But that night I started coughing so hard I pulled a muscle in my back.  I couldn’t walk without being in severe pain, putting weight on my left leg was almost intolerable.  Thank goodness for my walker, but darn the fact that I haven’t found a bathroom door that my walker will fit through!  So, I could get from the bed to the bathroom, then hobble inside.  What a mess.  I didn’t sleep that night, stayed on heat and ice, and luckily the next day it was much better.  I still rested with ice and heat to insure it got even better, but I could walk with minor discomfort.

So…yesterday Stuart called the doctor’s office…after 3 days, to tell them I need a nebulizer.  (really, I can get a nebulizer, I need the medicine that goes in it)  Unfortunately, they close early on Friday, and didn’t get the prescription called in before the end of the day…so I have to wait until Monday.

Another thing that I’m having trouble with.  Migraines!  Did you guess?   I had very good results from the Botox injections, but they have worn off…I am looking forward to March 7th, when I can see my neurologist at home and have the injections again.  (deep sigh)  I’m having a hard time with pain medication.  I was taking Hydrocodone, but it started making me itch, I’m allergic to Codeine (at least I’m told I am, I had the allergic reaction when I was pretty young, I don’t remember, but why would it be wrong?), Oxycodone makes me stop urinating, I’m allergic to Celebrex (I know this one is right, I have the ER trips to prove it.), and all NSAIDS hurt my stomach (thanks to an old doctor who had me taking Ibuprofen by the handfuls).  Before I left N.C. my neurologist put me on Tramadol (Ultram), well it makes me itch too!  So I’m stuck without a pain reliever stronger than Tylenol.  It’s been rough.  (I do still have other migraine meds, but sometimes you need a pain reliever…when I pulled that muscle it would have come in very handy!)

This post has become MUCH longer than I’d planned. I needed to put all of this in one place, and I wanted to make a point…but I think my point may have gotten lost.  Here’s the summary of what I’d like for you to take from this post:

  • When you are Chronically Ill, you need to pay close attention when you get sick.  Do not assume it’s your “normal” ill feelings.
  • Do not put off going to the doctor, if you don’t have anything worse than a cold, what did it hurt? (Yeah, our doctors may think we come in too often, but really if our doctor thinks that we should probably find a new doctor.)  I’m sure we often feel we go to the doctor too much, but don’t play around with your health.  Don’t be scared because if you are out of town and not close to your doctor.  Who knows a fresh pair of eyes may be helpful in many ways.
  • Often when you have a Chronic Illness you have less resistance to fight off sicknesses, like the “common” cold, than healthy people.  I know my body works over time just to take care of me with my chronic illnesses, throw in getting sick and there just isn’t enough resistance in me to put up a good fight.  I should have known better, and gone to the doctor sooner.

So the biggest point I want to make.  Know your body.  Know how you feel on a day-to-day basis, if you get sick, pay very close attention and take care of you.  You are the only one who can say if you need to see a doctor.  But don’t be like me, please see a doctor before things escalate into a more serious sickness.

I know I will always listen closer to my body than I have the past few months.  Just because there are other things going on in my life doesn’t mean my symptoms aren’t something I should pay attention to!!

 

I got lost!

On By WendyIn Chronic Illness, Pain9 Comments
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.