Tag: chronic illness

Customer Service and Health Care

On By WendyIn Chronic Illness, Health Care7 Comments
Doctor's Waiting Room, by CarolynYM at DeviantArt.
Doctor’s Waiting Room, by CarolynYM at DeviantArt.

Why do a lot of doctors and/or their staff think they are doing patients a favor by seeing them?  We are their customers, we are paying them, there are plenty of other doctors in the same field; we do not have just one choice!  (I do recognize that some in rural areas do often have just one choice, I grew up in an area like that.  We had to drive 2 hours for me to see an orthopedist, but still, they need to treat us with respect.)

I am so tired of going to a doctor’s office only to wait way past my appointment time, then I’m rushed through my appointment, and when I leave I feel like I wasn’t seen as a person, I was seen as dollar signs.

I have felt this way too many times.  Often, I only feel this way with the doctor’s staff.  I’ll love the doctor, but their staff is rude and inconsiderate.

I can give you many examples of this, but I will just give you 2 that have happened to me recently.  I wish I could say these were isolated events, but unfortunately they aren’t.

Recently I was looking for a new gynecologist.  The last time I went to my old GYN I had trouble with billing (during my annual visit she found something, I had to go to her office to give me a paper on it, I was subsequently sent a bill for an office visit…What?? Even if I was to be charged this, why was I not told in the office?), and feeling like she wasn’t listening to me or answering my questions.  But, this is a different story.  I asked my migraine specialist if she had a recommendation for a GYN who would work with my hormones to possibly help with my migraines, and who knows more about menopause than delivering babies.  She recommended someone who sounded perfect.  My husband made an appointment, unfortunately I was not feeling well the day before and knew I would not feel well enough the next day.  He canceled before the 24 hour required notification, and rescheduled.  The next time I woke up with a vicious migraine, and soon had an asthma attack.  No way I could make it.  Stuart called and explained, they said they understood and would not charge the late cancellation fee.  He decided to wait to make the appointment again.  In a few days he called to make an appointment, and set one up.  The person making the appointment said that they realize his wife has health problems but she really needs to make sure and keep this appointment.  Stuart wasn’t happy with this, “You can’t say you understand and then follow up with something like that.”……Then he received a call from this doctor’s office saying that the doctor would not see me.  He told Stuart that we had canceled 3 times with less than 24 hours notice.  Yes, my husband was livid.  He got off of the phone and told me about it.  He then called the office back and asked to speak to the office manager.  First, he told the person he wasn’t upset with him personally, but he was upset, so please don’t take what he was going to say personally.  (he is so thoughtful, I would have been upset with him, the man is the office manager, he needs to take care of these things.)  Stuart then complained about the way he was spoken to, and proceeded to explain that they lied.  He explained what was said, and what the truth was, and also said it wouldn’t matter now because I would not go to a doctor who allowed their staff to do such things.

Unfortunately for me, she was the only gynecologist I have found who is just a GYN and not an obstetrician too.  But I did find one who practices Integrative Medicine, and works with balancing hormones.  I will be seeing her in 2 weeks.  Let’s hope things go better at this office.

The other incident happened at my General Practitioners office.  I went to see my doctor about my asthma, I was still having a VERY hard time.  I walked in the office (with the aid of my spiffy walker) and the perfume smell hit me in the face!  I started to cough more and wheeze.  I was having a very hard time breathing.  I asked the front desk if there was somewhere else I could wait because of my asthma….I explained I couldn’t breathe with all the perfume in the waiting room…and it was obvious!  She got all snippy and said no.  So I said I would have to leave. Then she said, “well only if a room is empty” and she went to check. I felt like she took forever.  I could tell I was making people in the waiting room uncomfortable.  I had to use my inhaler 5 times just so I could catch my breath.  Then she comes out and gets me.  I was a mess, and ended up blacking out in the exam room, luckily my doctor and Stuart saw how pale I was getting and got me on the table lying down and helped me before I hit the floor.  My doctor was not happy.  (I must say that since this incident the staff there have been much more supportive.  I think my doctor said something to the front desk. Plus, I think we have been lucky to talk to staff who are much more likely to help.)  Now when I go there I wait in the hall until they can take me straight back.  Luckily, my doctor is in a building that has a huge hallway.

Do others notice that you get poor customer service from the health care industry?

Yes, I have had some awesome care, and awesome customer service.  I have some nurses and doctors that make me feel like family.  But, it amazes me how many times I’ve gone to a doctor and felt like I wasn’t wanted there….that I was a bother.  (once I actually had a doctor, who I was referred to, ask me why I was there???  Ummm, because my doctor told me I needed to come see you.  This was after she left me in the room with the door open and talked to a friend in the hall for half an hour.  She left a lasting impression on me, and not a good one.  I’m often very nervous now about going to a specialist now, thinking they may wonder….why am I there?  I’ve never been so embarrassed or pissed off (well I’ve probably been that pissed off, but boy was I ticked, and for some odd reason, my feelings were really hurt.)

Please note, I do understand that the staff at many doctor’s offices deal with a lot of strife, but every patient is different and should be treated that way.  I’ve worked in customer service, and I would be ashamed if I treated anyone the way I have been treated at some health care provider’s offices.

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.

I have a confession…

On By WendyIn Chronic Illness12 Comments

For over a year I have been clinically depressed.  I have had some small doses of mania in there, but mostly I have been shrouded in a black cloth with no hope of seeing the light.

photo by click tongue, at deviant art.com
photo by click tongue, at deviant art.com

I realize now that my psychiatrist was going through some issues of his own, and didn’t pick up on the fact that my depression was more than what I should have felt.  At one point he told me that he felt like he had done all he could for me and I should see someone else, I could not hear that he was looking out for me, I only heard that I was losing something else in my life.  He had been my doctor for close to 12 years, I felt I was just being tossed away.  So, I ended up staying with him.  It eased my mind, but didn’t make me better.  Yes, I had many things happen that gave me a reason to be depressed, but not as depressed as I was.  I wasn’t acting like me.  I really don’t remember much about 2012, I remember some horrible highlights, but not the good moments.  We all know, that is not me.  I normally cherish every moment I can, and look at things realistically, not escalate them to the point that I can’t see past the hurt.

The mania manifested itself as anger.  I was so angry at times, and I had no control over it.  I hate that Stuart was the one who had to be on the receiving end of all this emotional turmoil.

In 2012 and part of 2013 I cried every day.  Yes, part of it was losing Sandy, but it started before that.  I think the catalyst that started all of this was my diagnosis of Idiopathic Intracranial Hypertension (IIH).   I finally knew I would never get back to the point I was at the year before.  I would never feel “normal”.  There were a lot of emotions that went with this, a lot of realized loses.  I never expected to become a completely “healthy” person.  I’ve never been one, why would that change now?  But something snapped, and I no longer felt as positive as I had.  My new psychiatrist thinks my medication had not been working as well as it should even before then, but I was handling what was coming my way.  The diagnosis just pushed me past the point of helping myself.

I won’t go into everything that happened to me last year.  I will say there were some major things that I simply could not deal with.  However, I didn’t realize it then, I thought I was doing rather well on most accounts.  I knew there was one thing that was eating me up and sent me spiraling out of control….  I posted a poem about family.  How I wasn’t very close to my biological family and I was so happy I had a family with Stuart.  I was not saying it was anyone’s fault that my family and I don’t see eye to eye, it was really more about my love for my chosen family.  Well, a member of my family saw it and sent me a comment out of the blue.  This is someone I used to be VERY close to, but now she hates me and slanders my name to anyone who will listen.  I have not heard from her for about 10 years, yet she says my friends here don’t know me.  She says I’m evil….ect.  I never expected to hear from her again, but there it was, a comment from my niece.  She is 3o years old and still holds a grudge over something.  I don’t know what, and no one will tell me.  I have a feeling it is something from my very unstable Bipolar days, but I don’t remember most of that.  I was literally a different person while that disease had hold of me.

Now I have a new psychiatrist, and after one visit I felt like a weight had been lifted off of me.  I felt validated.  She understood my illnesses without me having to explain them.  She saw I have IIH and immediately said, “You can’t even exercise.”   THANK YOU!   Other doctors have said, “if you could exercise”…..blah, blah,blah.  It makes it sound like I choose not to exercise.  Not that I really can’t.  I will have excruciating pain, and will pass out.  I have figured out ways to do some weight-bearing exercises.  But I have to go slow.  I cannot do cardio, if my heart rate gets to high, I’m out.  She increased one of my medications.  And I am feeling better, but I think it needs to go up a little bit more.

However, I am seeing the light at the end of the tunnel.  Right now it’s just a little candle, but it’s leading me out of the dark.

light at the end of the tunnel....photo from deviantart.com by zoop zoop
light at the end of the tunnel….photo from deviantart.com by zoop zoop

I have good thoughts again.  I am not crying every day.  My anger is much more under control. (I know my husband is very happy about all of this.)  In short, I’m feeling more like me.

I appreciate what I have.  Even when I’m stuck in a dark, silent room because of my migraines I am grateful I can get out of the light, and have a roof over my head.  When the world is spinning and I feel like my stomach is going to come out of my mouth, I am grateful I have a safe place where I can ride out the storm.  I may not be able to walk unaided most of the time, so I’m very grateful for my spiffy red walker, that is also a seat.

I’m grateful for my dear friends who read my rantings and support me so much.

This past Tuesday was my birthday.  I received more birthday cards than I think I ever have since I’ve become an adult.  Some made me cry (in a good way), some made me smile and feel all warm inside.  One I don’t believe the sender was thinking, or perhaps they don’t realize my hearing limitations, it played music.  I can’t understand music.  Stuart had to tell me it played Happy Birthday.  *funny*   He thought it was rude, I really think it was just a matter of not understanding.  Or wishful thinking.

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.

 

Me So Stoopid!

On By WendyIn Chronic Illness, Headaches6 Comments

I know I’m having a hard time with cognitive issues lately.  I can’t remember a lot, and there are times I’m just confused.   I should have taken precautions because of this…but I didn’t even think about it.

I goofed on my medication.  Don’t say it…I do have a medicine box….and Stuart fills it for me lately because I’m so wonky in the head, however, I always take my Diamox (the medicine that keeps my CSF lower) at a different time than the rest of my meds.  I take one as soon as I wake up, even if I’m going back to sleep, I need to keep the night and morning dose less than 10 hours apart.  I also take my night dose just as I’m going to go to sleep…..again to keep not too many hours between them.  If I don’t I get a blinding headache when I wake up.  I also take one in the afternoon….I don’t take any other med in the afternoon, so I don’t have a 3 slot box….just AM and PM.   (I hope that makes sense)

OH, I should say….I take one in the AM, one in the afternoon, and 2 at night.  (the 2 at night helps stop the headache thing)

Well yesterday, and I’m not sure I didn’t mess up the night before too….I just don’t know, I tell you I’m confused…and it’s worse now.  But, yesterday morning I took 2 instead of 1…..my CSF (cerebrospinal fluid) dropped, too low.   So I stayed in bed lying flat trying to keep my pressure as even as I could.  Not a good day.  I did not take my afternoon dose, and I thought that would be it.  I went one over, so taking one less should make it right.  Ummmm, nope.   I took 2 at bed time, and I got so sick!  I had a headache at an 8 on a scale of 1 – 10.  Luckily, my migraine meds and ice on my head lessened the headache…but I was swimmy headed (as my mother used to say), and very nauseous.  And so confused.  I will lie here and think, “why am I here?, what am I supposed to be doing?, why does my head hurt?  why is the roaring in my ears so LOUD?…”  I start to get to get all teary because I’m just so off…..it’s very hard to explain.  I feel lost and very anxious about it.

Description from confusedcartoon.blogspot.com These cartoon cats are looks confused. One of them said that " I'm just so confused". Their faces are really crazy as funny cartoon faces.
image from, http://confusedcartoon.blogspot.com/

This morning I woke up and felt great!  For the first time in months.  Stuart was still asleep and I actually pondered going downstairs and making him breakfast, but didn’t know when he’d wake and wanted him to sleep as long as he could….he’s been feeling a bit run down…I wonder why?   Then I got up!  Oh no, I would not be trying to navigate the stairs today, I wouldn’t be doing much, but lying flat….again.  Damn.  I was so happy when I woke up, but that bubble busted pretty fast.  I was so ticked off, then Stuart pointed out….how many days have you woken up feeling good lately?  None….for a LONG time.  So even that is a victory.  We’ll get this medication mix up straightened out.  (he will be giving me that medication from now on, or until I stop feeling so wonky in the head anyway.)

FYI – Speaking of Stuart…..he has had one or two phone interviews and has more lined up….and possibly an in person interview soon.  Most local.  I don’t think we will have to move…but if we do, we’ll handle it.  As long as we’re together.

Cough….cough….

On By WendyIn Asthma, Celiac Disease14 Comments
asthma-airways_lg
To find out more about asthma please click on this picture, or search the internet.

Yes, I am coughing a lot again.  I’ve been coughing for quite some time, it got better, but it has gotten worse again.  So much so I had a hard time swallowing because my throat has been so raw.

It started getting worse on Friday, I saw the doctor yesterday.  She says my Asthma is not uncontrolled.  So I’m on a different inhaler for a while, she said I’d probably start to feel better in about 4 days, I know I slept better last night. Thank goodness.

This issue has been causing a lot of symptoms that we thought were from my other illnesses.  I have not been getting enough oxygen, they tested it yesterday and it was at 95%, not bad, but not great…..and I wasn’t having an attack, so my oxygen levels will drop a lot during those times.  I was also given another test…and frankly I’m not sure what it was called, I had a hard time hearing the doctor, her frequency just wasn’t hitting right.  Anyways, the test showed how much air you can expel when you blow out as hard as you can.  It was supposed to read 380, the highest I could get it was 300, I had to blow 3 times, and I almost passed out.

So what does this mean?  Not getting enough oxygen, and not having my lungs working properly can be causing a lot of my dizziness lately.  Especially when I go from sitting to standing.   I was getting worried because I can’t walk from one room to the other without getting winded and the room starts to move.  I thought the getting winded was because I can’t really do cardio, it hurts my head too much….it raises my CSF pressure.  But now I found out that I’m getting winded so easily because I’m not getting enough oxygen. I also found out this is probably why I’m so exhausted and lethargic all the time.  I sleep so much, and have no energy to do much of anything except maybe watch TV, and sometimes read.  But reading takes comprehension and recall, things I simply haven’t had lately.

Having your oxygen levels just a little bit lower than it should be can really cause havoc.   I knew my mother was going through a lot when she had lung cancer, and her oxygen levels were low, but I feel so much more for what she had to put up with.  I remember the insurance company not wanting to pay for my mother to have oxygen at home…I don’t remember what level they said she had to have but her’s wasn’t low enough.  I can’t imagine losing any more breath than I have and being told I can’t get help.  Luckily her doctor called the insurance company and wanted to know how they could say what her patient needed when they aren’t doctors and haven’t examined her.  She demanded that my mother get oxygen, and she did.   I was impressed with her doctor for that…for some other things, well she took good care of my mother, but she did not handle things well.    But that’s for another rant sometime.

So my dear friends, I haven’t meant to stay away so long, or so often.  I simply haven’t had the energy.  For example, today I woke around 11am, I went back to sleep about 1pm, I woke coughing and sick to my stomach about 3:30pm….it’s now 5pm.  It’s the end of the day for most people, and I’ve only been awake for a total of 3 1/2 hours.  I will probably stay awake for a few more hours, but I’ll be asleep by 11pm at the latest.  You can do the math to see how many waking hours I will have today, it’s too hard for me to think that much.

Update on other things. My darling hubby hasn’t found a job, but he has a phone interview tomorrow, and he had a long talk with a recruiter today (they really think he’d be “perfect” for that job, but we’d have to move to Nashville….if he thinks he’ll be happy, I’ll live anywhere.   The big worry he has is leaving me alone all day.  He’s worked at home for years now, even before I got sick.  I think it will be good for him to get out and go to an office…..I’ll be fine, or I’ll hire someone to come stay with me. Another big worry about Nashville…my doctor’s aren’t there.   I’d have to try to find a Neurologist that’s a headache pain specialist because I have to get the Botox shots every 3 months, and I can’t see Stuart taking a day off every 3 months to bring me to Durham.  I’d keep my ear doc, after having the second CI implant…..(I still don’t know when, I’ve had to cancel many appointments with him..dang-it.)…I won’t have to see him very often unless something goes wrong.  And it just won’t…enough of that!

I mentioned the Botox shots, I got my happy little Botox bee stings on the 7th, and I’m a happy camper!  Oh my goodness those things sure do make a difference.  I’ve gone from having pretty much, NO, pain free days, to mostly pain free or very low pain days.   I’m not afraid I’m going to run out of medication, so I take it earlier and abort the migraine before it takes hold and ruins my life. My doctor also prescribed an NSAID shot that Stuart can give me if I have a really bad headache or have one that last more days.  That makes me feel good to know that it’s available.  She also prescribed a muscle relaxer….after I asked about it….I feel that my migraines last longer because I tighten up so much during it and just can loosen up even after I’ve taken my migraine meds.  She said they do often use that as a cocktail to help.  And it has helped!   I can’t take pain medication any longer…..unless I want to itch for at least a day.  For some reason, I’ve become very sensitive to pain medication.  We’ve pretty much tried them all, but since they are mostly all opioids I’m having a lot of the same problems with all of them.   And I can’t take NSAIDs by mouth, my tummy does not like them!  So that put a big dent in how I could fight my migraines.  Now I feel we are on the right track.  I hope the Botox last a good while….I don’t want to be bombarded with migraines before it’s time to visit the Botox Bees.

There we have it, an update on my little family……oh Max is doing fine, right now he’s trying to push my laptop off my lap.  He loves me so much more when I’m doing something.

Pictures…do they say a thousand words?

On By WendyIn Chronic Illness5 Comments

I haven’t posted pictures in a while.  Thought I’d share a few.  I’ll update on me later…..today, scenes from my life.

Image
photo of courtyard at Duke Clinics in Durham, NC on a lovely spring day.
Tucson from back porch
View from back porch in Tucson, AZ
being silly Easter 2012
Me being silly..on a good day out with Stuart…Easter 2912
hair soon gone
Me before hair donation….if you look close you can see Stuart in the mirror.
my new do
What a difference!
Our 2 year old nephew sitting on daddy's lap (you don't see much of daddy) This child is always laughing and smiling....wonder what he's thinking? A big boy!
Meet JD (Johnathan David) our nephew, he just turned 2 and is wearing size 4 clothes.
max and Sandy lying beside me
I found this photo and had to share. Sandy and Max with me….you can’t see me. What a great friendship they had.
me and max
Me and Max in Tucson. I am a good cat bed.
me and stuart
Me and Stuart being silly after a rough day.
me at Rachels 5th
Me at Rachel’s (our niece) 5th birthday party..
sorry, slightly out of focus.
me with john and margaret
Me with Stuart’s father and step mother, at Rachel’s party.
Rachel 5yrs old
Rachel. the apple of my eye.
Rachel loves her aunt Stuart
Rachel with Stuart at her party…she told him he was her new bestest, best friend.
Rachel with Stuart
Rachel talking with her “Aunt” Stuart. She has always called him Aunt Stuart no matter how ofter she’s been corrected. It’s very cute. Here they are talking about broccoli on pizza. (She’s loves broccoli and pizza, she didn’t know you could get them together!)
straw wrapper girl doing a dance
I made a girl out of a straw wrapper…she likes to dance!
Being silly makes me feel better.
front drive in Tucson in snow
I go to Tucson in the winter to stay warm….and it actually snowed! This is the front drive. (It melted very fast)
snow in Tucson
A view from the backyard during the snow.
Since we were staying on a gold course the snow stayed on the grass a little longer, there were some interesting snow people made that day. You can tell when people do not see snow very often!

max looking at me
Max being curious…you should see how many times it took me to get this photo. He kept moving it’s actually a cute series. I love this photo…no green glowing eyes!
Max on my side
Me in bed asleep lying on my side with Max draped across me. He only did this when we were in Tucson, he never does it at home. ??curious?? I thought it was funny, but HOT.
me after lumbar puncture
Sorry a bit out of focus….oh and the picture is too.
This is after the last lumber puncture I had, getting ready to go home.

So there’s a photo catch up for you.

I hope you enjoyed it.  A photo can often say more than words, and it seems I’ve been pretty slack at writing words lately.

What is going on???

On By WendyIn Chronic Illness, Headaches, Migraines11 Comments

Did we buy a house built on a burial ground?  Are we to be cursed forever?  I can have positive thoughts and depression in the same day…..yes I am feeling the bipolar bug a biting.

I wanted to write a memorial anniversary post about Sandy on the 18th, but I was losing consciousness at the headache pain neurologist office because I had such a migraine.  I couldn’t even wear my hearing technology, I went in deaf, because sounds hurt so much.  I had my sunglasses on and a hat to block out as much light as I could.  Stuart took care of everything.  I passed out twice, once I didn’t know where I was when I came to….and it had only been seconds.  I could barely talk, and I can’t even hear my own voice.

It’s those days that make it hard to find the positive.  And to top it off……

Stuart got laid off the day before.  Out of the blue.  Company got some new investors and started restructuring….’nuf said.

I probably have a ton more to say, I have hit some posts here and there….I’m sorry.  I still have 400 emails in my inbox.  If you have emailed me…I promise I’ll get to it….or resend it please…who knows what is lost in that pile.

My head is hurting so much.

I must get off the computer.  I’m not on here every day. I hope after getting back on Botox on the 7th, it will get better…may take a couple of months of treatments.

thank you all of sending healing thoughts my way.  I send out health and wellness thoughts to you all each night.  I breathe in your pain and out healthy thoughts.

(oh and don’t worry about the Bipolar Bug…I’m seeing both types of exterminations soon…yes I know it can’t be killed, but they can get it more under control.  I don’t want to feel like I’m just waiting to die.  But days like my trip to the neurologist, I feel like that….or I did.  I’m so confused about feelings right now and I know not to trust them.  Also hormonal time…so my emotions are being toyed with…as long as I know this, I can handle it.)

(I wanted a cool graphic for this, but just didn’t feel like drawing….in too much pain.)

Thank you to all who have commented here and I haven’t been to your blog, or at least not very often….I care more than I can say.

 

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!