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.

 

Not a Good Day

On By WendyIn Chronic Illness10 Comments

We’ve been home almost two weeks, it doesn’t feel that long to me.  The first few days I felt better, just exhausted, so I rested a lot.  Then I started feeling wonky, and having a lot of migraines.  Nearly every day I turn to Stuart and say, “It’s not a good day.” The disequilibrium has been so very bad, I’ve only been on the computer once since I’ve been home.  (I hope I haven’t had any important emails).  When I try to read on the computer I feel car sick.  I can’t stay on for very long, but today I’m going to try to do some things, a little bit at a time.  I also haven’t been out of bed other than to go to the bathroom except one day, and I didn’t last long.  I think I’d try to venture out more if we didn’t have someone staying with us.   (our house sitter asked to stay until June 14th, she’s moving then, and Stuart said yes….long story).  It terrifies me to have an attack in front of someone other than Stuart, or a doctor.  Even doctor’s make me uneasy.  So, going downstairs takes a lot of courage right now.  (not that she’s here all the time, but I’m still uneasy).  Don’t get me wrong, I do like her, but right now I would feel this way about anyone staying here.  I’m simply not having good days.

There really isn’t much more to say today, I wanted all to know I’m still alive.  I’m going through a time of change.  We’ll see where it leads, but Picnic With Ants may change considerably.

I can tell I’m very depressed, and have been for months.  Last year was very difficult for me, and the beginning of this year hasn’t been a walk in the park.  I see my new psychiatrist on Thursday, I think, I’m anxious to see if she has any suggestions.  I’m really tired of doctors telling me that if I could exercise more it would help my moods….well I can’t, so what am I supposed to do?

I have lot’s of doctor’s appointments over the next two weeks.  I’m overwhelmed just thinking about it.  Hopefully, all will go smoothly.

Thanks for staying around.  I feel like I’ve lost so much over the last year…or more…  But that’s for another post.

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!

“Ow! Ow! Ow!”

On By WendyIn Chronic Illness15 Comments

I was awakened, after being asleep less than 2 hours, by hearing the words: “Ow!, Ow!. Ow!”.  Imagine my surprise when I realized the words were coming out of my own mouth.  Suddenly I realized just how much pain I was in.  My head was at an odd angle and my neck was screaming with pain, my head was throbbing, and my stomach and bladder were causing extreme discomfort.  As I hobbled to the bathroom I found the words, “Ow!….” continuing to come from my mouth.   (Funny thing, I can’t really hear me say it, but when I woke up it really did sound as if the words were coming from outside my body….strange how deafness works sometimes.)

I stretched my neck and put ice on it and it felt much better, my head was also starting to ease some.  The pain in my bladder and stomach were a different story.  My stomach literally felt like it was being eaten from the inside out.  Over production of acid is not a pleasant feeling.  I tried to eat a little something to calm the pain down, I took extra medication for my acid reflux, but it takes time to work.  I’ve never had it so bad before, I could not touch my stomach without it causing more pain.  I would love to have been able to take Maalox, it was always my go-to fix when my stomach was acting like this, but unfortunately I haven’t been able to find Maalox or any medication like it that I can take, they all have something that will cause my fructose malabsorption to attack.  I’m happy to report after a couple of days of a pretty bland diet, and extra acid reflux medication, my stomach is once again pain free…..for now.  I do try hard to not eat anything that will cause excess acid production, and I don’t think I did eat anything offending before this, however, stress can also cause excess acid production, and the pain from my bladder was causing me much stress.

When I first saw the doctor here I was having pain in my bladder and she tested my urine and found nothing, I have an irritable bladder and we decided it was just spasming.  So when this pain started I thought it may be the same.  Unfortunately, this pain kept getting worse and worse.  Every time I moved it hurt.  Sitting was very painful, so was walking.  I’m sure everyone who’s ever had a UTI will also know that I was having to go more than usual, but couldn’t urinate once I got in the bathroom…and it was very painful.  All of this started on Sunday, the 3rd, I had just finished my antibiotics and steroids for the bronchitis 2 days before.  I couldn’t believe I had an infection again. I upped my already large amount of water I drink, trying hard to flush things out.  By Thursday, the 7th, I was convinced it wasn’t irritable bladder talking, something was wrong.  So off to see the doctor again.  Unfortunately, the doctor I’ve seen before is out on medical leave. (I hope she is alright, I mentioned before that she had pneumonia last month, so I’m a bit concerned.)  I saw another doctor in the office.  Not someone I really want to see again  I felt like he talked down to me, as if I was not able to understand things.  Stuart thinks I’m a bit too sensitive, and maybe I am, but this visit started off wrong (and Stuart later told me that he didn’t have a good feeling about this doctor either).  I told the doctor I have profound hearing loss and could not hear him.  He raised his voice a little, but didn’t look at me when he was talking, it didn’t help when I did see his mouth as he had a lot of facial hair and I couldn’t see his lips well enough.  I had to rely on Stuart to tell me what was going on.  He asked if I’d been running a fever, I explained that my normal temperature is 97.4F, and it has been around 99F recently.  He said, that’s not a fever, everyone fluctuates. (Then why ask me??)  I told him about just finishing antibiotics and just couldn’t believe I had an infection so fast….he says that antibiotics don’t stop you from getting something else….but it was the way he said it, as if what I said was stupid.  I never said they did, I am just overwhelmed that I’ve been sick so much recently.  I asked him about a medication I have for irritable bladder that is expired and wanted to know if I should get a new prescription….he went into this long tirade about how medicines don’t explode after the expiration date, and how there have been studies that medication that hasn’t been opened is good for years after the expiration date. I was so confused at how he was talking to me….and yes I heard most of that.   I told him that I know different chemicals have different half-lives, and I didn’t know the half-life of this medication.  Well he just went on and on about how drugs are not food and they don’t just lose it because of the expiration date.

He did examine me, but I didn’t feel that he listened to me very much.  That’s ok, I talk too much when I’m nervous anyway.  He told me my urinalysis was negative, but that could be because I was drinking so much water it caused it to dilute the urine too much.  He said I had all the classic symptoms of a Urinary Tract and Bladder infection so he was going to treat me for it.  He gave me an antibiotic specifically used to treat this type of infection, and told me if I wasn’t better in 48 hours to call the doctor on call or I could wait until Monday and call him.  Yeah, that’s not going to happen if I can help it.  I’m feeling better.  Not well, but better.

On another note….I’m so very proud of myself today!!  I took a bath by myself!  I even washed my hair!  I haven’t taken a bath or washed my hair without Stuart’s help in a very, very long time.  I’m thinking over a year.  Don’t worry I wasn’t being irresponsible.  Stuart was in the house and on alert for my call.  He also just couldn’t stay away the whole time and came in to check on me.  But I did fine.  A little wobbly, but that often happens with temperature  changes (cool room, hot water).  Or it just happens any time….heck most of the time…so I’m getting pretty used to it and how to handle it.  Being extra cautious, have hand holds, non-slip surface under my feet…..

(at this point I got too hot while writing this and started to feel funny, so I had to put it down.   Today, Tuesday February 12th, is the first day I’ve felt like coming back to the computer.  I think I’ll end this post here  If I start where I left off I’ll be writing another VERY long post….so I’ll have to write more 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!!