Tag: Headaches

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!

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!!

 

Grateful during a Rough Year

On By WendyIn Chronic Illness12 Comments
Buddha, by Wendy Holcombe
So much to be grateful for…

Yesterday Stuart and I were talking and I told him I was grateful for many things this year.  He looked at me a but stunned.  Yes, it’s been a rough year.

  • I was diagnosed with Idiopathic Intercranial Hypertension, this knocked me off my feet for a while, and I got a bit depressed over it…but I’m so very grateful that the medication works!
  • I’m still having severe vertigo attacks….but I’ve only had 3 or 4 this year…That’s amazing, and something to be grateful for!
  • I have migraines, and migraine associated vertigo – I’m grateful I have a super doctor now who specializes in headaches.  I’m also grateful that the vertigo I have with migraines, is not as severe as the Meniere’s vertigo.
  • I lost my dearest companion of 19 years….I still miss my Sandy so much every day – but I’m so grateful she did not suffer, and I’m grateful for all the wonderful memories I have of our lives together.  “Everybody Loved Sandy”
  • I’m grateful my father pulled through a near death experience, and my sister was there to help him.
  • I had a very hard time after someone wrote me a note that simply shook my world, and not in a good way.  I’m grateful (thanks to studying Buddhism) I can breathe in that hate, and breathe out happiness and love toward others.  I’m also grateful that I do not have to send a reply.  It’s a rough thing to accept, but some people will not like me, may even hate me, but as long as I still like me, I’m ok.
  • I lost my hearing in my left ear as of July last year (2011), and have greatly reduced hearing in my right ear.  I’m very grateful for modern technology, with my cochlear implant (received July of this year) and hearing aid I can hear.  I may not be able to hear as well, but with the help of technology I am not deaf all the time.  I’m so very grateful for this!
  • (**a TMI note)  I was diagnosed with vulvar vulvodynia, a painful condition of the vulvar region.  I’m so grateful that my doctor gave me topical Lidocaine, now my husband and I can have relations with much less pain.  (thank goodness there are times my head stops spinning long enough to try this.)  : )
  • I’m grateful we were able to come to Tucson for the winter.  The trip out was not as hard as I expected….Thank Goodness.  The time we’ve been here so far has been rough, but I have faith I will feel better and better.  I’m so grateful for the beautiful weather we’ve had so far.
  • With every challenge I’ve been through this year….and I haven’t mentioned them all….I’m so grateful my husband has been right beside me, holding my hand, being the best advocate for me (he has to make many calls for me since I can’t hear on the phone, he’s a wonder at making doctors understand), he loves me, and thinks I’m so very special.  I tear up just thinking about how very lucky I am to have married this wonderful man.  (I am most grateful for my husband and our relationship.)
Stuart and me, a couple of years ago.
Every time I look at this photo I can feel the love pour over me.
I’m so very grateful for the love my husband shows me. (photo by Jenn Dorff)
  • And last but not least, I’m grateful for my friends.  Especially the special people I’ve met through this blog and others.  It makes me sad that others have to go through chronic illnesses with pain and suffering, but I’m grateful we can share our experiences with each other and know we are not alone.

There are many other things I could list that I’m grateful for but this post would be very long indeed.  This post has made my lightened my heart and helped with things I was coming more and more depressed about, I believe I should take the time to notice the things I’m grateful for much more often.

If you are in the US, may you have a safe and joyous Thanksgiving.  (remember, take care of yourself first.)  I was not able to partake in the family festivities today, a migraine and unsteadiness simply would not allow it.  (especially with all the noise, I admit I was afraid, this would have been the first get together since I got my CI, it’s scary going into a situation with a lot of noise when you can’t hear like you used to.)

May we all remember to take time to think about the things for which we are grateful.

A cold is not cold, so why do they call it a cold?

On By WendyIn Chronic Illness5 Comments

Opps I forgot to Publish this…*smiles*  So it’s a little out of date, but much of the info is still good.   This post was more of a Freeform post….I just sat down and wrote, if I felt like it or not and didn’t re-read or edit so please forgive the errors that I’m sure are in abundance…..so…here’s for a bit of out dated news   (I’m pretty much over my cold, it’s still hanging on with Stuart)

You will not believe this, but I thought I finally published this yesterday! I looked today…no it was not there.  I think this post is haunted….read at your own risk.

For the past week I’ve been taken over by the cold virus.  (you aren’t normally cold when you have a cold…so where did that name come from….and no I really don’t care enough to try to look it up…just pondering.)

My dear sweet husband that does so much for me caught my cold around day 4 of my dreaded mucus maker.  He is such a trooper.  I can look look at him and tell how bad he feels and how tired he is, but still he would take care of me.  I will admit, I have not been able to walk very well since I caught this virus, my ears do not like a head cold!  I started feeling  better a few days ago (ok, maybe 2), but when I’d try to walk around I’d start spinning.  Back in bed for me.  So Stuart has been left to nurse his own cold and take care of me too.  We’ve had a lot more takeout this week.  Honestly, for me, just put my meds close enough and feed me (a lot, this cold has made me ravenous….strange for me when I’m sick!), and I’m ok.  I have been sleeping more than I thought possible.

Oh, I must tell this story.  I always thought I was very careful with my medications….but I did a really stupid thing the other day.  I have my Diamox sitting by my bed because I have to take one as soon as I wake up to keep my cerebrospinal fluid regulated.  I reached for it and took a pill….then thought, that pill was way too small.  I then really looked at the pill bottle.  My prescription for Ambien had been left on my nightstand, instead of in the drawer, and I took one of those.   You can guess what happened, I went back to sleep and slept all day!  But first I decided I should try to do a couple of things….like answer some emails….not the best idea.  My husband also told me of one thing that happened that I don’t remember at all.  Yes, I thought I had always been very careful with my medication, but I will me much more diligent now!

As a result of this cold I shared with my hubby, we have decided to post pone our leaving for Arizona by a week.  We should be leaving on the 3rd now.  The cold just put us way behind in getting things ready to go.

It also postponed my hair appointment.  So it’s still long.  And I may keep some length.  The test results didn’t show any reason that I should be losing my hair, and my doctor said I may want to see a dermatologist.  But she also put me on Biotin.  I changed my shampoo and condition to one that is supposed to give you more lift or something, I got a real boar’s hair brush, and I’m taking the Biotin.  Much to my surprise, I looked at the back of my hair this morning and I couldn’t see scalp.  I asked Stuart and he said he didn’t see the “balding” spot I’ve had for a while now.  My hair seems to be getting thicker.  So….my hair appointment has been changed to Halloween.  We’ll see what happens.  Stuart said it could be a horror, or perhaps magical.   (the magical suggestion came after I told him he was mean and scaring me.)

I’m a bit disappointed we are leaving later now.  I love Halloween, and I’m not prepared for it. The house isn’t decorated, I have no costume, I don’t have the treat bags put together, and would need to purchase more stuff.  I think our house will lose its reputation this year.  (the first year we lived here we had less than 20 kids Trick or Treating….last year we had about 100, they come from different neighborhoods to come to our house….it has kind of gotten a little out of hand….but I love it!)   But I’m not prepared!  This year, the kids will just get candy.  (normally, they all get treat bags…made for different age groups…with things like pencils, stickers, Play-doh, glow sticks, temporary tattoos…..all kinds of things….plus they get candy.)  yes, my house is the house to come to!  We often have a grave yard set up with a fog machine….oh I love Halloween.  The decorations are just so cool.

Yes, I’m rambling a bit.  I’m still tired from my cold and when I’m tired I ramble….or sleep…..I think that’s next.   No wait, I’m hungry!

BTW:  I always buy my treat bag goodies right after Halloween for the next year, I don’t spend a lot….and it’s really worth it to see how the children love them.

Being sick when you are Chronically ill.

On By WendyIn Chronic Illness5 Comments
image by Fukari on deviantArt.com

People who are chronically ill have to deal with symptoms every day…some days are better, some are worse…but what about when you get sick from something else.

Even a cold can knock me for a loop.  There have been many times this year that I’ve felt I’ve had a cold, but it’s only lasted a couple of days.  What was that?  At least it didn’t last long.  I keep thinking it’s probably allergies.  Now, I feel like I have a cold…Day 3…perhaps I really do.  But ragweed is really blooming here and it’s EVERYWHERE!  So maybe??

It doesn’t matter, it’s causing the same symptoms: scratchy throat, more mucus, stuffy ears, a bit of a headache, (but much less than usual when I’m sick).  Being sick, when you are already sick can cause all sorts of trouble.  My ears are stuffy…not a good thing.  I walked in the bathroom night before last and just before I got to the toilet the world moved and my world started to go dark.  This is the closest I’ve ever come to taking a complete nose dive straight on the bathroom floor.  I held onto the sink for dear life, and started squatting down…thinking if I fall it won’t be as far to fall.  I called Stuart and he saved me.  It didn’t last long, and I felt a bit guilty for waking Stuart up, but if he hadn’t come I would have been on the floor soon and preventing that is much better than trying to get me up after I fall.  He was a dear and stayed right with me.

I’m not sleeping well because of this cold thing…and that’s not good for most chronic illnesses, mine is no exception.

I can say my head has been feeling much better.  The day before I started feeling sick, the day was overcast and just yucky.  The type of day that normally sends me to bed with a category 8 migraine.  I actually went out that day!  I did not have a migraine!  Unbelievable.  So maybe the Botox is working..(crossing fingers and toes).  What ever is causing me to have less headaches I’m happy.  This week has been nice….as far as the head pain goes.  : )

All of this brings me to another question.  Sometimes when I have symptoms of getting sick, it mimics symptoms that I get from my chronic illnesses.  If you have this problem, how do you tell the difference?

For example, I have a lot of gastrointestinal issues because of the gluten and fructose intolerance.  When I have any tummy issues, running to the bathroom sick, I automatically think I must have eaten something I shouldn’t have.  or was hit with cross contamination.  But, what if it’s really a stomach bug, or worse…food poisoning?  I keep thinking it’s my fault, I ate something I shouldn’t have, when I possibly should be heading to the doctor.

Or with my ears.  I get off balance, feel like my ears are full…all symptoms of Meniere’s that I have often…but what if I’m getting an ear infection?  This has happened numerous times.  I end up getting a very bad ear infection because I think the first signs are just my normal stuff.

I don’t really expect any answers.  I try my best to be as in tuned with my body as I can, to notice if something isn’t exactly like the usual symptoms, but it’s hard.  The thought of going to the doctor and being told it’s nothing just makes me cringe.  (but we’ve all had that haven’t we) I think all we can do is try hard to keep ourselves as healthy as we can in spite of our chronic illnesses, and really pay attention when you start to have more symptoms than normal.  (doesn’t that sound strange, that we have symptoms that are just every day normal things.)

A little update on other things.

I was supposed to get my hair cut today, but it has been postponed until next Friday.  Not that I don’t like my long hair, but it’s thinning, and the doctors haven’t been able to figure out why yet.  She put me on Biotin to hopefully help some, and I may have to see a dermatologist…but that will have to wait.  In the mean time, I’m getting my hair cut to make the thinning less obvious.  (right now I have to wear my hair in a pony tail, or tied back so it’s not visible.I’m not saying I have a huge bald spot or anything, It looks like I have a wide part trying to go down the back of my head, and I can’t cover it.)  So next week, I should have photos of before and after!  I plan to get about 10 inches cut off.  I’m donating it to Pantene Beautiful Lengths.

The progress with the CI (cochlear implant) is going well.  I’m hearing more, but things still sound a bit tinny.  I hear best with the CI and my hearing aid at the same time.  I’ll see the audiologist and Dr. K. again before I leave for Tucson.

We leave for Tucson, AZ on the 27th.  I can’t believe it’s almost here.  It’s been months away for so long, now it’s just around the corner!  So much to do…actually, my darling husband has done almost everything.  He’s a wonder!

One more note about the Botox….as Allison said on her blog about her experience, I’m having less expressions with my eyebrows.  I had an appointment with my therapist the other day and she actually noticed my expressions were not quite right.  I guess that’s why she gets paid the big bucks (haha) she needs to notice things like that.  It was strange to say, oh it’s just the Botox.  (she already knew about the treatment).

I’ve had another couple of breakdowns abut Sandy…I think it has actually helped some.  To get it out and not hide it, to let people know how very much I’m still grieving.  The last time I broke down (I really breakdown, can’t talk, sobbing, shaking all over….ect)  Stuart said the wrong thing.  He didn’t mean it and thought it was helpful but…he said, “This isn’t helping”.   No shit!  Well, him saying that actually did help, I got so mad it him it snapped me out of it.  He really felt bad…just awful really.  I couldn’t stay mad long, but it was a learning experience for both of us.
Sandy is still with me.  She always will be.  As someone told me, I have a Sandy shaped hole in my heart and nothing will be able to completely fill that shape.  I do hope I’m through with the complete breakdowns.  No fun, and Stuart is right, it doesn’t help.  It actually hurts me physically, then I’m hurting everywhere.  My therapist suggested some art about Sandy.  I had started some, but haven’t finished it….I have a lot of things I’ve started but haven’t finished  (I’ll take photos some time, and you can see the great unfinished works of W. H.)

I’m sure I’m leaving something out….but there is always next time.  : )

Not Just for Wrinkles….

On By WendyIn Chronic Illness, Migraines12 Comments

Botox is now used to treat migraines.  I know you saw me post that I was getting my shots on October 3rd….and I did…more in a moment.  However, isn’t it amazing that Botox will help migraines?  Or at least I hope it will.  I’ve been reading about it, and it seems to, I know someone who has been getting the shots for a while now and she has had wonderful results.

Botox is for people who have tried many other treatments but still have 15 or more migraines a month.  In trials it prevented about 9 of those headaches.  Having half as many migraines as i do now would be amazing.  However, I also read that people who took the placebo reported having 7 fewer migraines a month….a difference of 2…not so great.

There are a number of side effects you could have, but I haven’t noticed anything.  On the Allergan site (they make Botox, I found that funny since they are known for contact lens stuff) it says, “It may take several weeks to see a response. In clinical trials, patients showed a response at their 4-week evaluation. After 2 treatments (at 24 weeks), BOTOX® was proven to reduce headache days each month.”  I was told by my doctor (and I know others have been told this too by their doctors) that you will notice a difference in 4-7 days, normally about a week.  I hope the doc’s right, I’m ready for relief. Also, considering I won’t be able to get my second injection for about 5 months I might have waited until then for my first treatment if it takes 2 treatments to be proven to reduce the number of headaches each month.   (We will be in Tucson, AZ for the winter, so I can’t get my next injection until March 7th).

I’ll keep you updated on how my headaches are doing.  Allison, from Taking Life for a Spin, recently had her first treatment and after about a week she reported she couldn’t lift her eyelids.  You can check out her story here: Unresponsive Eyebrows.

So, how did the treatment feel you ask…what exactly did they do???

I had 31 injections….here are photos from the Allergan site showing the injection sites.  One of mine was a bit different, Cochlear Implant in the way.

Forehead injection sites
photo from http://www.botoxchronicmigraine.com/botox-treatment-expectations/
Injection sites sides.
This was a bit different on my left side due to my CI.
photo from http://www.botoxchronicmigraine.com/botox-treatment-expectations/
injection sites Occipital
photo from http://www.botoxchronicmigraine.com/botox-treatment-expectations/
Injection sites back of head and shoulders
photo from http://www.botoxchronicmigraine.com/botox-treatment-expectations/

What did it feel like?  My doctor told me it would feel like little bee stings.  Well I’ve only had big bee stings so it was much less painful that I thought it would be.  The needles are tiny, but the solution does sting a bit, and some of these areas were pretty sensitive on me, but it wasn’t bad.  I’d do it again.  : )   It went really quick, my doctor really knew what she was doing, just a few minutes and it was done.  I spent much more time waiting on her to come in the room.  : )

So like little bee stings, yeah, but remember I got stuck by the whole hive!  hahaha.  No…I promise it wasn’t bad at all, it was nothing like some of the other procedures I’ve had!!

After I got the Botox injections, I also got an injection for the migraine I had right then.  (one that had been going on for nearly 2 weeks)  So after my visit we got a bite to eat and I came home and slept for 6 hours!  What a way to spend the day…a good way actually.  The shot in the butt helped my head pain, and he shots in my head will hopefully help me to have less head pain, and I had a good 6 hours of sleep straight through.  I did feel like I wasted the day, then I thought, “What else would I have done?”

Oh….I forgot the funny part of the story! But beware…this is Way Too Much Information!

I had been having cramps and all the symptoms of having a period, with no period, for over a week.  That morning I woke up and felt fine, I thought….hmmm, guess I’m not having a period this month.  (I am 49, I’m expecting to start skipping some periods)  So I got dressed, and left for the doctor’s, we get half way there and I’m hit with a horrible cramp.  I thought….no, no, no…I didn’t bring a thing.   Of course, when we got to the office I go to the rest room and yep, I started.  Well, If you are a woman, I’m sure you’ve all had this happen at some point in your life, and what do you do?  No dispenser on the wall….so…Toilet Paper to the rescue…and pray it’s good enough for the time being.  So I went and waited and waited for the doctor, and had all my shots and 2 hours later we were leaving…and I forgot, yes, I forgot about my makeshift protection.  So we go out to eat lunch, and go home and I walk in the door and remembered.  How could I have forgotten?….well the shot could have had something to do with it, but, but, ewwww.  Luckily, it wasn’t that bad.  But I will never again assume I’m not having a period!!   Lesson learned!

Invisible Illness Week – 30 things you may not know…

On By WendyIn Chronic Illness, Disability, Meniere's Disease10 Comments

September 10 -16 is National Invisible Awareness Week – If you’d like to get involved check out the official site. 

30 things about my illness you may not know.

(warning, some answers may give too much information, but it’s not detailed)

See, I don’t look sick. This photo was taken in 2009, right before my first ear surgery.
  1. The illness I live with is:  The main illnesses I live with are Meniere’s, chronic Migraines, Bipolar I disorder, and chronic hip and pelvic pain.  If you are interested in my other illnesses please see the the tab above titled The Ants That Bite.
  2. I was diagnosed with it in the year:  I don’t remember any more.  I think I was diagnosed with Meniere’s in 2001, Migraines (I’m not really sure, I’ve had doctors tell me on and off since my teens that I have migraines, but they became chronic in my late 20’s…I’m 49 now), chronic hip pain and pelvic pain – they haven’t figured out what is causing all the pain, so no diagnosis.  Bipolar I – 1990 then was told they were wrong – re-diagnosed in 1994.
  3. But I had symptoms since:  Meniere’s – the first attack I remember was in 1993.  Migraines – the first one I remember, I was 11.  The pelvic pain – in my early 30’s,  in the mid 1990’s.  The hip pain – 2008. Bipolar – in my teens.
  4. The biggest adjustment I’ve had to make is:  These are a few major ones for me….  Losing my hearing.  Not being able to drive.  Not seeing my friends like I used to.  Realizing that I will never be cured.  Not being able to have a sex life without pain.  (but I’ve dealt with, or am dealing with all of these.  They will not keep me down.)
  5. Most people assume:  I can do much more than I can, after all, I don’t “look” sick.  And some assume I use my illness to get out of social situations, but honestly I hate being so solitary
  6. The hardest part about mornings are:  Never knowing what the day will bring.  I often wake up with a blinding headache, I know what that day will bring.  But if I wake up feeling decent I never know if I’ll continue to feel that way, or if I’ll be hit with a Meniere’s attack or Migraine.  However, I try to make the most out of every day.
  7. My favorite medical TV show is: Ummm, funny, I used to watch some medical TV shows, but I don’t any longer.  I think I see too much of the medical community in person.
  8. A gadget I couldn’t live without is:  I suppose I could “live” with out most gadgets, but there are some I wouldn’t want to!  My Cochlear Implant, I can hear so much more now. My laptop -so many of my friends are in there!
  9. The hardest part about nights are:  Trying to sleep, and trying to stay asleep.  Fear.  Fear of having an attack just as I’m falling asleep (this happens more than I’d like to admit), fear of waking up with a blinding headache……However, each night before I sleep I acknowledge my gratitude for the day, and plan what I’d like to do the next day.  I always have hope I will have a good day, and if I don’t I still know I’ll get something out of it.
  10. Each day I take __ pills & vitamins. (No comments, please)    18 daily (this included the total number, not different medications), 5 as needed, 4 vitamins daily, and one B12 shot a week.
  11. Regarding alternative treatments I:  have tried many, including chiropractic, acupuncture, certain vitamin routines….  I found medical massage helps my migraines and hip pain a lot.  I also use a special diet to treat gluten and fructose intolerance.
  12. If I had to choose between an invisible illness or visible I would choose: I don’t think anyone would choose to have an illness, but I’ll deal with the hand I’ve been dealt. 
  13. Regarding working and career:  I don’t work.  I don’t have a career.  Takes a lot out of conversations with others.  My doctor suggested I look into filing for disability, but I haven’t done it yet.
  14. People would be surprised to know:  I often don’t wash my hair for a month or more.  Water on my head is a trigger for me, especially if I have to close my eyes.  Luckily, my hair is pretty dry, and it’s long so I just tie it back.
  15. The hardest thing to accept about my new reality has been:  There are a lot of times I have to say” I can’t” or “no” to people…and to myself.  Losing most of my independence.  Not being able to drive.  And not being able to have a normal sex life.
  16. Something I never thought I could do with my illness that I did was:  Find the positive.  Become my own advocate.  Fire a doctor.
  17. The commercials about my illness:  The only one of my illnesses I’ve seen commercials for is Migraines.  Commercials are always drug companies wanting you to talk to your doctor about their drug.  I’m not comfortable with this, and normally the side effects they list are pretty scary.
  18. Something I really miss doing since I was diagnosed is:  I miss being able to go places alone.  (the answer to this question changes often, but right now, not being able to go anywhere alone is very difficult.)
  19. It was really hard to have to give up:  My hearing.  Even with technological help, I have a cochlear implant (CI) and a hearing aid, it is still very hard to hear at times.  I know my hearing with the CI will get better, but it has been very hard to loose all my hearing in one ear, and almost all of it in the other.  Without technology, I can’t hear anything.
  20. A new hobby I have taken up since my diagnosis is: Blogging. Reading a lot!  I’ve always liked to read, but now it’s almost an obsession.  (thank you to Kym for my Kindle!   Oh. another gadget I wouldn’t want to live without.)
  21. If I could have one day of feeling normal again I would:  I would be so very thankful!!  Then I’d spend a day pampering my husband, in and out of bed.  ; )
  22. My illness has taught me:  To be my own advocate.  To be more tolerant…I thought I was tolerant before, but I realize I needed a wake up call on that one.  That I’m not alone….this one relieves me because I needed to feel that someone understood, but it makes me so sad that others have to go through what I have.  And that I can handle much more than I ever thought I could.
  23. Want to know a secret? One thing people say that gets under my skin is: Any form of, telling me I’ll get better.  “When you get better….”,  “You will beat this….”   NO, I won’t.  This doesn’t go away.  I may be able to find something to make it more tolerable, but it will never go away.  And often treatments that work, stop working.   I also hate it when people say, “You don’t deserve this”  I know they are trying to be kind….but I never thought I deserved this!  And one more….”But you look so good.“
  24. But I love it when people:  Tell me how they are doing, want my opinion, want to talk to me as a friend…..Don’t get me wrong, I don’t mind if someone asks about my illness, if they are interested and want to know more about it.  But, sometimes I feel like people forget I’m anything more than my illness.
  25. My favorite motto, scripture, quote that gets me through tough times is: This may not be the life I expected, so I’m changing my expectations.   I don’t know if this is a quote or anything, it’s simply something I thought one day and it has helped me through accepting a lot of things that have had to change.
  26. When someone is diagnosed I’d like to tell them:  Often people who have been recently diagnosed find my blog and it scares them, so I start off telling people:  Everyone’s journey with Meniere’s is different.  Most do not get to the stage I’m at, so please don’t think you are going to lose your hearing….or any number of things I’ve been though.  I’m in the very rare group.  I let them know there are many treatments to keep Meniere’s under control, and point them to sites and other bloggers who can give a different perspective.  Most importantly, I assure them, they are not alone.  They can contact me any time, and there are online groups.
  27. Something that has surprised me about living with an illness is:  That my husband and I have gotten even closer.  Thank you to our therapist, I think having to go to a therapist about all of this surprised me too.  I was not handling losing my independence very well, and hubby wasn’t communicating very well.  But by going to a therapist we began to communicate out needs much easier, and recognize our needs.  Another big surprise is that people will reach out to me.  I’m very surprised that I’ve touched people, and made some honest friendships with people I’ve never met.
  28. The nicest thing someone did for me when I wasn’t feeling well was:  (This does not include things my husband does for me)  Come to visit me.  It doesn’t happen often, but I do enjoy other people’s company.  I hate that I often have to cancel when someone wants to do something with me.  I’m already so isolated, and if I have to cancel people often think I don’t want to see them, or I’m just too much trouble.  I don’t blame them, most of my friends have families, and they have to work their schedule around a lot of things.  So missing a visit makes it harder to make plans the next time.
  29. I’m involved with Invisible Illness Week because:   Because I have more than one. Some people I love and care about have invisible illnesses.  We need to let people know we are still people, but don’t judge us by how we look.
  30. The fact that you read this list makes me feel:  That you care, and maybe you understand some things about me you didn’t before.