How about a little W(h)ine?

On By WendyIn Chronic Illness9 Comments
A little W(h)ine anyone? photo from dreamstime.com free collection

Today I shall do something I very rarely do…I’m going to Whine!

(and take note, I don’t feel well, so I haven’t read over this post…it’s probably full of errors. Feel free to whine about it!)

I am trying to keep my normal positive, can do attitude, and I promise it’s here, but I feel so overwhelmed, I just need to whine for a little while.

So anybody in for a little pity party?  Plenty of W(h)ine will be served!

If you’ve read my previous posts you know I started having extreme “slosh” head on Friday, February 3rd.  Today is the 9th.  Since this began I’ve woken up with vertigo 5 days!  That is the absolute worst feeling.  I have no chance of taking the medications to perhaps stop it because I’m already spinning.  Ugh!  I do think the meds have helped make the attacks much shorter though. Yay!

I “spoke” with Dr. Kaylie today.  Really I emailed him.  I got very upset when he emailed me back and said that these questions had to go through the nurses so I needed to call in the future….this after I just said in the email that I would have called but I can’t hear on the phone and Stuart hasn’t had time.  Ahhh! I felt like…OK, you are my ear doctor you know I can’t hear…after the mess with the ASL class I just broke down and sobbed.  I wrote him back that I would never email him again, and he could have told me that before.  yes, I was a bit abrupt.  Then I proceeded to write him a formal letter telling him how I didn’t feel like I was being respected…I started to send a copy of the letter to my therapist for her feedback when I got another email from Dr. Kaylie, saying I had been no bother, and it is easier for him to get the email directly but there have been new rules and regulations put in place that they have to follow.  Well, take the wind out of my anger.  I’m still a bit miffed, but I need to be aware, he’s a very busy doctor and I’m probably overly sensitive especially right now.

In the original email he said I should probably talk to Dr. Gray about getting another LP to test my pressure.  And he wants me in to see Dr. Atkins (the neurologist that specializes in headaches), ASAP.  So Stuart will be calling Dr. Gray’s office to see about another puncture, and calling Dr. Atkins office to see about getting on a cancellation list.

Ok, that wasn’t too much whining…

but I just feel so beat down.  Every time I think I’m getting a bit better….shit hits the fan.  Unfortunately, sometimes more literally than others.

I did have another yucky bowel thing go on today.  I woke up feeling a bit better today…not spinning first thing.  But still slosh head and simply not feeling great.  So I decided I’d rest today.  (as if I could do much more).  So I’m on my computer and I feel the need to go to the bathroom, nothing urgent.  I like to play solitaire on my Kindle when I’m in the potty.  When I walked in the bathroom…about 5 feet from my bedside, I noticed my Kindle wasn’t there, I walked back to the bed to get it and all of a sudden I no longer simply needed to go to the bathroom….I needed to be in there NOW!  So I ran back, and I felt it was coming out….I started pulling down everything and right before I got my butt on the toilet there was a big SPLASH!  Just one second sooner and I would have been covered in crap.  I was still in there a while, so it was far from over, but I think I’ll be listening to those slight little feelings that say…hey you need to go to the bathroom sometime….knowing they mean…Get your Butt in the Bathroom NOW or you are going to be very embarrassed!

My emotions were so raw today, my physical self isn’t cooperating with me, and I almost crapped myself.   Stuart said, “it can’t get much worse”.  I was startled and said, “Oh yes it can!  and I have to always remember that!  I could be worse.”  (maybe he just said that for me to remember that..either way it worked.)

So after a long day of mental exhaustion, hours of crying,and head pounding I’m ready to say: I give up for the day.  As Scarlett O’Hara said “Tomorrow I’ll think of some way . . . after all, tomorrow is another day.”  But tonight…I will rest!

And my darling husband has gone to get me Vietnamese Chicken Salad Rolls from PeiWei.  I’m a lucky girl.

Of course, he may be doing this because Penelope is back in the hospital…hopefully not for long, they have to control her headaches.  So her husband isn’t cooking.  He has been a wonder to have here.  He’s been cooking nearly every night.  Good food, and good for you!    Unfortunately, Stuart hates to cook.  He’s good at eggs, frozen pizza, and macaroni and cheese.  He’s actually a pretty decent cook when he wants to, but he hates it really.  And after a long day of caring for me and working….I don’t blame him a bit!

He may also be doing it because I insisted on cooking some last night…at least help by doing part of it.  It was the second time this week I almost caught the house on fire!  This time I set a dish cloth on fire!!  A few days ago I thought I turned a pan off and turned it all the way as high as it would go!  The house smelled for a couple of days!  Ruined my favorite pan!

So I’m not allowed to cook at all until I’m not slosh headed any longer!!  I know, I thought I could do it…and I’m normally pretty good at figuring out what I can do.  Plus, cooking last night Stuart was right there cooking too….glad he saw the flame!  *an embarrassed little giggle*.

May we all feel as well as we possibly can!

 

Candle Lighter Award

On By WendyIn Chronic Illness7 Comments

Weeks ago Phylor honored me with the Candle Lighter Award.  I am honored Phylor chose me as a recipient of this award.  To say that I am a candle in her life who helps to light the way…this brings tears to my eyes.  How could anyone wish to be more?  I hope I can live up to this honor and light a candle in the darkness to help light a few paths along the way.

Kate Kresse, of Belive Anyway, originated the Candle Lighter Award to: . . . “light a candle in the darkness that envelopes us all at times. I want to lighten loads and light the way. I gravitate towards positive people and positive blogs. I want to start a blog award that reflects my love for the positive in the blogosphere.”

Kate asks little of the winner – to link back to her comments when the blog has been posted, and to, of course, if you choose, to pass the award along to anyone you feel deserves it. You can award it as many times as you like, all that Kate asks is that you link your post back to her site.

I pass this award on for the same reasons Kate started the award.  She stated, “I think people that are going through the efforts to be positive and make the world better through their efforts and blogs deserve to be recognized. I am always looking for encouragement and ‘light’.”

I have so many people who have been a light for me.  I wish I could honor each one with this award, but there are simply too many to list, at this time I do not have the energy to properly acknowledge you all.   I’ve decided to limit it to 2 recipients.  Two very special women whom I feel do not get the recognition they deserve.  Two women who have been through torment and trials and come out with a positive can-do attitude that lights the way for many others.

The First person I’d like to recognize is Fiona of The Agoraphobic Blog.  

Fiona had a horrific experience that brought about severe panic disorder with agoraphobia (according to Pub Med Health Panic disorder with agoraphobia is an anxiety disorder in which there are repeated attacks of intense fear and anxiety, and a fear of being in places where escape might be difficult, or where help might not be available.)

Fiona, is an amazing young woman.  She is working so hard to overcome these intense fears.  I feel such inspiration when I read her posts, hearing how she made it out and about one day.  Even on her bad days, with severe migraines or a panic attack, you can still hear her positive attitude and hope.

Said said in one post, “So yes, I have agoraphobia and Panic Disorder, but it definitely does not define who I am, I have never become depressed about it, I have got frustrated a few many times and had a huge cry, got it out of my system, and then moved on again.  This is my life, I am happy with it, it sure could be a hell of a lot easier, but who has the perfect life anyway? everyone’s life is hard at some point, mine just happens to be hard to do simple things, but I AM OKAY WITH THAT!”

In another post she said something that really stuck with me.”bad days are ALWAYS followed by good ones and I always remember that and keep it in mind.”

Thank you Fiona, for not only lighting the path for others with panic disorder and agoraphobia, but for anyone who needs inspiration!

The second person I’d like to pass this award to is Kelly from Fly with Hope.

Kelly states “I became disabled in October 2005 by my Chronic Migraines and Chronic Daily Headache (more specifically New Persistent Daily Headache). I have had frequent headaches and Fibromyalgia since I was a teenager. In addition to Migraines, headaches and Fibromylagia, I have Meniere’s disease, Irritable Bowel Syndrome, Obsessive Compulsive Disorder, Anxiety, Tachycardia and Food & Environmental Allergies.”  To understand some of the battles she goes through read one of her most recent posts…Joy in Prison.

On her blog she shares her ” journey of learning how to manage chronic illness and hold onto Hope.”  Kelly is very involved in advocating for herself and others who have chronic illnesses.  She reaches out to people and shares this profound Hope, and deep spirituality that she has.

Her light shines through her, with every word that she writes.  She has personally been a great inspiration for me and a light to help guide my way thorough a lot of pain.

To carry on the Hope, Kelly recently started Project Migraine Hope.  Please go and check out this amazing project Kelly started where people can post videos telling their experiences with migraines and how they have found hope.  If you have migraines, or are a caregiver or loved one of someone who does, please consider telling your story.If you haven’t done so already, Please, Please for all of us who suffer from migraines and those who care for us  sign the petition that the Alliance for Headache Disorders Advocacy started to Urge Congressional Hearings on the Impact of Migraine and Headache Disorders.  This is very important to all of us who have migraines and a project Kelly has been working very hard on.With the excruciating pain that Kelly lives with daily, she still has Hope, still finds a way to be a health activist, and finds the time to reach out to others sharing her light and sharing Hope.

Again, I’d like to say that there are MANY people who have helped light my way, and given me hope.  MANY who still do each and every day.  Please know how much I appreciate you all.

I chose these two very special women because of the horrors they have been through, and are still going though, yet they still find a way to be positive and share their light with others.

4 days on a Merry-Go-Round and counting

On By WendyIn Chronic Illness7 Comments

The title sounds like I’m going for a world record or something huh?  How many days can you stay on a Merry-Go-Round.   Hopefully, I’ll be getting off soon!

Funny, I used to love riding a carousel! I'm on the left, my friend Jenn is on the right.

Today is day 4 of slosh head and vertigo attacks.  I was awakened again this morning with the sensation that I was moving.  I took my mediation, and headed to the bathroom, hoping I could at least pee before the spinning started.  As I was leaving the bathroom I called out to Stuart, he woke up and I said in a sing-song voice, “It’s Back!”   He jumped out of bed, boy that man can move fast when he needs to.  I’d made my way to the bed with my walker, when I let go of the walker and started to sit on the bed it felt like someone pushed me down!  If I’m going to have a drop attack I’m glad I was already falling toward the bed!

I was in full spin at this point.  Phenergan suppository time.  I noticed the day before that staring at a fixed spot on the wall was not working, it just started moving and my eyes followed.  This morning I started staring at something on my night stand, about 1 foot away, and closed one eye…this really helped.  But I was so sick, the heat was engulfing me.  The diarrhea started first.  Then the vomiting.  Luckily neither lasted long, but I feel like crap.  My head hurts, I do not feel steady enough to walk unassisted.  I’m so very tired, but can’t seem to sleep more than one hour at a time.

I weighed myself our of curiosity.  I’ve lost over 5 pounds in the past few days.  I promise I am staying hydrated and I am eating.

I emailed Dr. Kaylie just to let him know how different things are since I saw him just one week ago.  Just a FYI, so he is aware.  He wrote back, thanked me for the update and so sorry I am feeling bad.  I know he wishes he could do more.

Stuart has a theory…and I’m wondering if he’s right.  He thinks perhaps my pressure has built up again, and I just had a “blow out”.  That would definitely cause these symptoms.   But right now I don’t know what they could do about it.

Stuart talked to the ASL teacher and he said she sounded very apologetic and concerned.  She understands my frustration but doesn’t know how to fix the situation.  She said later the class does go to non-speaking, but I think by that time I’d be so far behind I would be lost.  She admitted this class is set up more like a foreign language class and not a class for the deaf.  We are going to look into a refund tomorrow.

Someone sent me links to a few on-line tutors who she worked with, and we think we will check them out.  (thank you Antonia)

So that’s if for today.

Not a great way to celebrate Stuart’s Birthday!  Him taking care of me….once again wiping my ass, holding my head as I throw up, cleaning every thing up, helping me to and from the bathroom, feeding me…..and he’s been working today and did some laundry.  This Superman deserved a nice birthday.  Luckily I gave him his gifts early.  One I had to because he was about to buy it!  The other, he got a massage at home yesterday…it was supposed to be a surprise, but he decided he was going to give that to himself…after I’d already had it set up for over a month!  Going out to dinner is on hold.  No cake.  I wish I could have doted on him or a change.  I’ll make it up to him. *wink*

3 in 1 – 3 mini posts, I need to catch up!

On By WendyIn Chronic Illness4 Comments

I don’t know what happened with this post, I thought I posted it a couple of days ago.

I just realized it was never published!

A little anti-climatic after my last post…but just imagine you read this one first.  : )

1 – WEGO Health Award Winners

Be sure to check out the WEGO Health Award Winners!  You can find the winners with links on WEGO Health on Facebook or on the WEGO Health Blog Post.  Keep watching these sites for more information about the 2012 Health Awards.  This was WEGO Health’s first Health Activist Awards and they would like your input to help make them even better, you can take a quick poll here http://4159395.polldaddy.com/s/tell-us-what-you-thought-of-2011-health-activist-awards.  I am thrilled that I was chosen as a finalist for the TMI Health Activist Award.  There were many nominations for each category, I hope you took the time to nominate your favorite blogs.  Everyone who is a Health Activist should be proud of what they accomplish.  You make a difference!

Brain MRI - photo from http://www.eldr.com

2 – Monday, January 30th…a day at Duke.

On Monday I had 3 appointments at Duke Medical Center. 12:15 pm Clinic 1D have blood tests.  Since this is a mini-post I will not go into detail about how odd the technician was, and how very painful the procedure was, needless to say, it wasn’t the best experience.  (who takes blood from a person’s hand?  Without even looking for a vein elsewhere?  And fishes around under the skin for the vein?)  Yes, not a goo experience.

1:30pm Lennox Baker Center (located about 2 or 3 miles from the clinics) for Brain MRI with Contrast.  The first person we encountered there was very confusing to me.  I kept getting confused as to what I was supposed to do next, I told him I couldn’t hear, but he just seemed to get frustrated with me…glad I had Stuart with me to help (but he got a bit confused too, so it wasn’t just the hearing issue).  I got an IV for the contrast dye, I have a huge black bruise from this, but it didn’t hurt nearly as bad as the blood test I had earlier.  The MRI itself was pretty easy, much easier now that I can’t hear the extremely loud noises that it makes.  (I also took a Valium before going, so it was much less stressful!)  When the technician took me back to Stuart, he just held the door to the waiting room and left.  Stuart wasn’t there.  I didn’t have my hearing aid.  I asked the people in the waiting room if they had seen another man, and asked them just to shake their heads because I can’t hear.  Everyone said NO…yes, I began to panic a little.  I’ve never been put in that type of situation before.  I couldn’t hear what anyone was saying, and I had no on there who knew me who could help me.  I went back to where we checked in, and Stuart was in that waiting room.  They told him that’s where they would bring me back to.  It was only a bit of a panic for a moment, but once again I’m reminded of how much I must depend on my husband.

Lunch – 2:45 – 3:10 Chipotle – There was really only one faster type place we could stop on the way back to the clinics for my next appointment.  We stopped at Chipotle.  I used to love this place, and I thought I was being very cautious when I ordered.  I had the grilled chicken tacos (no onions or gluten!)  Then I got some guacamole…I love their guacamole.  I didn’t realize until I’d eaten about 2 tablespoons of it that it has red onion in it.  My stomach bloated to such an extreme my loose top was very tight around my tummy, I really looked like I was pregnant!  I had the worst heart burn.  I was not a happy girl…but lunch tasted really good!

3:30 Duke Clinics – Dr. Kaylie’s office – As expected, my MRI was clear.  No brain tumor, a little fluid still around the surgery site, but that was to be expected, it will dissipate over time.  The greatest adventure we had at his office was with the Blood Pressure machine.  First they couldn’t get it to read my BP, then the BP cuff actually blew off!  She fixed it up, and then she took my BP again…it was 175/113!  They told me I couldn’t leave.  The nurse started asking me questions, was I light headed, did I have a headache….I mentioned I had heart burn, she started to look worried and asked if I had pain in my jaw.  I thought…oh great they think I’m having a heart attack!  I explained I had heartburn because I’d just accidentally eaten onions.   She decided to try a different machine, again, after numerous tries it wouldn’t take my BP.  We decided to rest for a bit and try again.  Third machine, finally read my BP 145/92 – yes still a bit high, but after what I’d just been through it was understandable, and Dr. Kaylie said I was OK to leave.  Whew!  I hope my blood pressure is normal next time I go to the doctor, I don’t want to go through that again.

This is a close example of what my new glasses look like.

3- New Glasses

After my appointments at Duke we went and picked up my new glasses.  I was so excited, looking forward to seeing clearer, the frames that would fit better with my hearing aid, the lighter material, and the new look.  I put them on and looked in the mirror and didn’t really like the look.  I’ll get used to it.  (I think most of it has to do with my face being so much rounder.  I’m just not fond of that look!)  In the office I thought I could see fine.  On the ride home I realized I couldn’t read the street signs.  Then yesterday while at class I realized I was having a very hard time going from distance seeing to seeing close up.  Oh great!  My optometrist and I discussed what I do and how I need to see.  She told me that the glasses I have now are single vision lenses., not bifocals.  So I decided to get two pair of glasses, one that is just single vision, and one that are called “computer progressives”.  They will help my vision seeing the computer and reading up close.   After examining the glasses I have now, I realized that they are in fact bifocals.  I’m not sure I would have added the extra expense of the second pair if I’d know this.  I’m usually very frugal about how much money I spend on glasses, but I was so unhappy with the last pair we decided to get the “perfect pair”.  Now for the beginning of trying to get these glasses fixed.  *sigh*

So there we go, 3 short versions of things I wanted to say….unfortunately, I still have much I want to post about.  Receiving the Candle Lighter Award and passing it on…a link to a post about being positive featuring me, and my day yesterday….so much I want to share, you may get tired of hearing from me.

The Good, The Bad, and The Ugly – all in just a few days.

On By WendyIn Chronic Illness26 Comments

This is not the post I’d planned to write, but life has thrown me for a loop so I’m telling it all….

The Good

On Thursday it was a beautiful day.  The weather was perfect with temperatures in the 70’s F, and clear skies; an amazingly gorgeous day for the second day of February.   I decided to take a drive for the first time since June.  I haven’t had vertigo for over a month so why not?  I went to a small town just north of us, it wasn’t a long drive and I chose that route because there is very little traffic on the road.  The top was down in my little car, and I had a blast!  What a milestone!!

Not so good – we went to our ASL (American Sign Language) class Thursday night.  This was our second class. I’m not sure I’ll go back.  I keep telling the teacher and the students I’m hard of hearing.  I’m so very lost in the class because i can’t hear what’s going on.  If Stuart tries to tell me what I’ve missed then he misses something.  I was so upset, I teared up 3 times, and came very close to just walking out.  To explain some of my frustration,, we have exercises where we each say things in sign language.  Then the teacher will call on someone to translate what the person said, I couldn’t hear what the person was saying so I have no idea if I understood what the person was saying in sign language.  (note, this is just one example).  I do not see how I’m going to get anything out of this class.  Stuart is going to write the teacher.  One huge problem, they allowed too many people in the class.  So there are 16 people in there and I’m the only one who is hard of hearing.  I feel so isolated and sad.  The one place I thought would be more understanding, and help me, is simply ignoring my needs.

The Bad

Friday I had slosh head all day, and was afraid I was catching a cold.  The weather had changed, and we had cleaners come in on Thursday (I’m sure they kicked up a lot of dust), so I   wasn’t that worried about it.  Probably just barometric pressure change and allergies.  Yesterday, I had minor slosh head, better than the day before, still didn’t think much of it since it was now raining.  We decided to go out and do some things.  When we were in Earth Fare (a small healthy grocery store), I turned to look at Stuart and the world spun around.  I tried to brush it off as a little disequilibrium but couldn’t.  We went to the little cafe they have so I could get something to drink and take my pills.  I sat for a little bit but things were not getting better, I had the overwhelming desire to curl up on the floor.  We hurried and bought our little bit of groceries and headed home.  Once in the car I was still feeling horrible and got Stuart to search around for something I could throw up in if I needed to.  I then took another Valium.  I don’t normally take them so close together, but we had a 25 – 30 minute drive home, and I did not want to have a severe attack in the car!  Wonders upon wonders it worked.  When we got home I was still pretty off but I knew the worst was not going to happen.

The Ugly

** some of the following may be too graphic for some readers.

Today I was just waking up and stretching when I felt my husband kissed me.  A pretty nice way to wake up huh?  The first thing I really noticed was how loud the tinnitus was.  My head was still a bit sloshy, and today it was also screaming at me.  Since I was a bit off, Stuart made me some breakfast and brought it up to me.  (oh, I have to admit he does this a lot any way…what a guy!).  After breakfast I felt exhausted and thought perhaps I should sleep a bit more.  I put my sleep mask on and started to doze, suddenly I felt like I was moving.  Stuart walked in the room and I told him, he grabbed me some pills.  I had to go to the bathroom.  He helped me there and left, but I ended up having to call for him to help me.  I couldn’t stand, pull up my undies, or anything.  He rushed in and helped me and nearly carried me to the bed.  By then I was in full spin.  I grabbed a second Valium (it worked the day before!) and Stuart helped with a Phenergan suppository.  *ick*

I kept trying to focus on one spot but the spot kept moving around and around…I was getting sicker by the moment.   I was nauseous, but hadn’t had the tell-tell sign of the extreme heat that usually precedes the vomiting.  Oh…but the diarrhea….I knew it was going to blow if I could make it to the bathroom or not.  I also knew if I moved my head enough to get up and go to the bathroom I was going to start throwing up. What to do?  I was getting pretty upset by this point…all the chanting of affirmations and envisioning myself as a tree with strong roots that cannot be moved were not working…I was starting to panic.

My dearest darling husband created the portable bed pan (a trash can with a liner) once again, like he did when I was stuck in bed for a week after surgery not able to raise my head.  So I scooted my butt off the bed over the trash can, keeping my head very level…and exploded!  Oh my gosh, I had no idea that was going to happen.  Sometimes the suppository makes me really feel like I have to go, but it just dispels what’s left of the suppository and a little bit more.  This was gross.  I was so embarrassed and just completely grossed out.   I kept apologizing and crying a bit.  After that ended, the vertigo started to subside.

Stuart was so wonderful.  He told me he’d much rather deal with the bed pan situation, than for me to throw up.  He said it’s so much easier on my body.  And he’s right, but the diarrhea in the make shift bed pan, and having to have him clean me up…that’s much higher on the embarrassment scale.  I guess I just need to get over that, and I’m so grateful I have a husband that will do anything to help me feel better.  He’s very right though, the vomiting is terrifying, and much more painful.  So I’ll swallow the embarrassment I guess.

I’m still slosh headed, and feeling a bit wonky.  I’m exhausted, have napped a bit on and off, but I keep waking up feeling worse.

 

When we walked out of the store yesterday, with Stuart helping me hobble to the car, I said to him, “Well, the surgery is supposed to make the vertigo 70 – 90% better, they never said it was gone.”  Very stoic of me, holding it all together.  However, once we were in the car and on the way home, I broke down.  I thought about how I drove just 2 days earlier, what if this had happened then?  I thought about how all I wanted to do in that store was curl up on the floor and pray for the room to stop.  What if I had been alone?  I feel like every time I feel I’ve made an advancement and can make some plans, the floor falls out from under me.

Even more reason to live every day as it comes!  I do not regret my drive, and I wasn’t far from home.  If I had gotten sick, I would have pulled the car off the road and called for help.  I would have handled it!  If I had been at the store alone…well, that would have been more difficult.  I probably would have taken my pills and left the groceries.  Gone to the car and called for help.  I’d rather be alone in my car dealing with this than in a public place.  I may worry, but I’m confident if the worst happens I will be able to handle it.

A Week in Pain

On By WendyIn Chronic Illness17 Comments

This past week I didn’t write much about me.  I have been way too concerned about my friends, luckily she seems to be doing much better (blood pressure was normal this morning!!).  She’s still experiencing some wicked headaches, I’m hoping those will subside soon.

I’ll update you more on her situation soon, but this post is all about ME.

image from http://www.posters.ws

Warning…the following may be considered Too Much Information for some people.

Over a week ago, I once again had a day filled with urgently running to the bathroom because of extreme diarrhea.  By the end of the day I was having painful spasms in my intestines all the way through my anus, with just little bits of fecal matter coming out.  I was miserable, but not as miserable as I was when I woke up with severe pain around my anus early the next morning.  I’ve heard of hemorrhoids, I think I’ve even had small ones before, but this was different.  I was in so much pain.  I had a huge lump around the side of my anus, it was hard, and very, very painful.  For three days I was in bed with ice packs between my cheeks.  I had a prescription for anti-inflammatory cream because of the severe rash I had around my anus a few months before, so I treated it with that also.  Unfortunately, Stuart just started his new job and couldn’t take time off to run me to the doctor, and from everything I saw on-line, there wasn’t much they could do.  Yes, if it doesn’t go away they can remove it, but let’s not jump to that conclusion just yet.  After a week, it’s still there, but it’s not red and extremely tender any longer.  It’s not as hard.  It’s gotten a little smaller, but it’s still pretty big.

I almost didn’t write about this.  I was so embarrassed.  I’ve written posts about my husband having to take care of my personal hygiene, and how I’ve lost control of my bladder and bowels during a Meniere’s attack, but I was embarrassed to tell about the pain and suffering I was going through because of a hemorrhoid.  When you hear the commercials, or even read articles, they talk about the “itching and burning”, it really sounds like it’s no big deal.  The pain I was in for about 3 days was horrible.  Possibly more so because of where it was, but I never thought hemorrhoids could be so severe.  A hemorrhoid is a swollen vein.  That sounds rather innocuous doesn’t it?  I always thought just a little rash type of thing, I’ve had little bumps form there that itched and burned, I figured they were hemorrhoids, and I still think they were.  As I said, I just never knew they could get so big and painful!  I made the mistake of actually looking it up in Google Images….those pictures are the worst of the worst!  I soon realized what I was going through was nothing compared to what could happen.

So the next time you hear someone has hemorrhoids, don’t think it’s just a little discomfort, it can be a very major thing.  I still may have to go to the doctor about mine, but I’m so relieved it doesn’t look like some of those photos.  *shudder*

Next complaint…OK, I’m complaining a bit tonight.  I’m not whining, NO really I’m not, I’m just annoyed and complaining a bit.

I’ve woken up with a migraine every day for over a week, and I can’t get in to see the neurologist Dr. Kaylie wants me to see until early March.  I’m so sick of these headaches.  The only medication that helps is Maxalt, but I’m only allowed to get 18 of those per month.  This is a migraine abortive medication. You are supposed to take one at the first signs of a migraine. If I have to take 2 per day to get rid of my migraine, I’ll be out in 9 days, even if I only have to take one, I’ll run out in 18 days.  What do I do for the rest of the month.  The pain killers help a little, but it doesn’t do much.  Dr. Kaylie asked me today, what I was calling a migraine, could I describe it.  I’ve been having migraines since I was a teenager, of course I can describe it.  I explain, I’ve been waking up with severe pain, normally on one side of my head, sometimes I see flittery movements that aren’t really there, but not always.  I’m nauseous and sometimes throw up.  I can’t stand the light….he said how about sound our smell….I told him I can’t stand any sensory input, even too much touch hurts.  He thinks the new neurologist will be able to help.  He and Dr. Gray work closely with her.  So I’ll change neurologist, let’s just get this pain to stop!  (yes, I know I’ve had a headache very day since I was 16, I don’t expect the pain to stop, but if we could keep it at maybe a 2?  That’d be nice.   OK, enough complaining over that.

See not too much complaining.  (Just wait for the next post…I had a day at Duke Medical Center today that seemed to be one pain after another…literally.)


I’m so very honored! I’m a Finalist for the TMI- Wego Health Blog Award!

On By WendyIn Chronic Illness8 Comments

I’ve been chosen a finalist for the TMI (Too Much Information) Wego Health Blog Award.    I was thrilled and humbled when I was nominated, I couldn’t have asked for more.  Today I spent the entire day at Duke..running between clinics, and getting an MRI…today was long and often painful.  When I got home I collapsed in a tub, and finally around 10pm checked my email, and found 2 friends congratulating me on being named a finalist.  I was stunned.  Speechless – yes, I know that’s hard to believe, don’t worry it didn’t last long.  More than anything, I feel so honored.

I’ve been so busy the past few days I completely forgot they were going to be announcing the finalist, so this was a huge shock!

Please be sure to go to the WEGO Health Blog to find out all the finalist in each category!  Including my friend Kelly Wahle with her blog Fly With Hope, is a finalist for the Health Activist Hero Award!!  I’m so proud of you Kelly, for all you do!  You are such an amazing woman!

The other finalist for the TMI award are:

Mo- Mommy Odyssey

Jacquie Wojcik – Bad Pancreas

Sara – A Girl With Guts

Jenni Schaeffer – Jenni’s Guts

Brynn Hultquist – Lupus Interrupted

Be sure to check out these awesome Health Advocates.

But, beware, we are finalist for the TMI (Too Much Information) Award.  We “always goes there – no matter how personal or embarrassing the story.”

Why did I decide to tell it all, no matter how personal or embarrassing?  I was going through a very rough time with one of my chronic illnesses (Meniere’s Disease), I searched and searched to find out more about it.  I wanted to know if other’s were experiencing the same things I was.  I couldn’t find the ugly details.  People would mention having an attack, but no one ever gave any real details other than, having vertigo and vomiting for hours.  I talked to a few people privately and found that many were having some of the same things I was experiencing happen to them, but they were uncomfortable talking about it.

I was sure there had to be other’s like me, who want to know all the nitty-gritty details, to know they are not alone with what they are going through.  I then decided, I wanted to tell it all!  I want people to feel they can talk about what goes on behind closed doors, when we are alone with our illnesses.

After a few posts detailing the dark and ugly side of my illnesses, I was praised by my readers for being so open and honest.  When I wrote in detail about one of my vertigo attacks, I heard from many who were relieved to hear, they were not the only one who went through these things.  One very special reader, who fights her own battles with chronic illnesses, told me that post was the most terrifying thing she’d ever read.  I cried and cried after reading that.  I felt validated.  I was so relieved that people could understand, even people who do not suffer from Meniere’s Disease could read that post and “get it”.

I knew then, I needed to be a voice to this illness, and the other chronic issues I have.  I wanted to break down the stigma of telling it like it is.

No matter what the outcome of this award….I can not be happier than I am right now.  Being nominated by a reader, then after a very detailed process to pick the finalists…I am just so humbled to be in the same category as the bloggers mentioned above.

And I will continue to tell it all, the good, the bad, and the very ugly.  I hope you will keep me company along the way.


Quick update – The little family is doing fine.

On By WendyIn Pregnancy Complications8 Comments
Penelope and Chris on New Year's Day

My friend and her husband have arrived.  Not as much to worry about as I thought.  (Yes, insomnia played a big part in all of that.)

Turns out she doesn’t have preeclampsia, so all the rules have changed.  She had a lumbar puncture and found out her cerebrospinal fluid pressure was way too high!  I sure can relate to that huh?  So they drained some of the fluid, and they are hoping to keep that under control.  She may actually make it to term!!  (yes, that means they will be here longer, but that’s ok.)  They don’t know if they can keep the intracranial hypertension (the fancy name for high CSF) under control, or if it will turn into preeclampsia also, so they have to keep a close watch on her.  Of course, we are hoping she can carry to term, and will not have to spend any more time in the hospital before delivery.

She can’t do the stairs much just yet, but that’s mostly because she’s so sore from the lumbar puncture.  She’s still having headaches, they drained a lot of fluid, perhaps too much too fast (IMHO) so it’s taking a little while for her body to regulate the pressure.  Hopefully the headaches will ease soon.  Right now she’s sleeping.

Penelope is such a lovely person, and her husband Chris is so gracious, I don’t think this is going to be very stressful on me at all.  Actually, it could be very helpful in many ways.

I was feeling a bit anxious about Stuart having to go to Alabama for a week, probably the week of the 13th, if they are here I will feel so much better.   I didn’t want  to miss our sign language class, so I plan to drive to class that night, I think I’ll be fine, but just needed to know if I got into trouble there would be someone I could call for help.  I’ve already mentioned it to Chris, and he was happy he could help.

It completely slipped my mine last night that Chris is a cook!  He’s already thinking of creative things he can make that are meat all our dietary restrictions.  He even assured us that he knows how to be careful with gluten products.  He’s offered to clean house, cook…anything.  I think he just needs to relax a bit.  After a while, he can worry about doing more things around here, but for a little while, I think they just need the peace and quiet that is our home.

They have both been gushing about how wonderful it is to have a peaceful place to stay.  They are so worried about wearing out their welcome, but I told them, that we’d just treat them as if they were roommates.  Their room is theirs, our room is ours, the rest of the house is community space, and as long as they don’t expect us to wait on them hand and foot, they shouldn’t be any trouble at all.  I don’t get to see Penelope nearly enough, I haven’t seen her in a couple of years at least.  I’m happy they are here, and so glad we get a chance to renew our friendship.  (not that we haven’t been friends even though we have been apart, but this is a great chance to get close again.)

We may move the little TV in their room for a little while, when Penelope feels more like moving around we’ll hook the cable box back up to the big TV down stairs.  Stuart and I rarely watch TV, we’ve actually been thinking about getting rid of cable.  When we watch shows we normally watch them from the computer.  It’s easier to watch what we want when we want, and not have to rely on the DVR to record the shows we want. (it often screws things up).  The only thing I really watch on TV live, is cartoons.  But I can always pull those up on Netflix.  (yes, I am love cartoons.  Just like a kid, I can watch them over and over and not get tired of them.)

I love that we are able to offer our home to our friends.  They are special people.   It also makes me feel less isolated, and needed.

I will admit, my husband actually made me a bit more nervous about things last night.  When he said he didn’t know if he could handle people being in the house for so long, I got worried.  Then that jumped to wondering all about what they may need, how we could work things out…ect.  But now that they are here, I think everything will be just fine.  (just liken you all said…I should have known.  Thank you my friends for the reassurance, and guidance.)

About my sleep.  Once again I didn’t get to sleep until about 6am. I woke up at 1pm, right before they arrived.  Again, I had the terrors while falling asleep feeling like everything is spinning around.  Again, I had bad dreams, not nightmares, just troubling dreams.  and Again, I woke up with a headache. Not severe, thank goodness, though it soon turned into a full-blown migraine.  I have to figure out a way to make these things stop.  I know I don’t have much control over the migraine issue, I’ll have to see the neurologist if this continues after my recovery period is over.  But you would think something could be done about the spinning and dreams.  Sometimes I’ll take a Valium a little before bed, and that helps with the spinning sensation, but it makes my dreams a bit freaky sometimes.  And I’m not too sure if the doctor would approve of me taking a Valium every night.  I’ll ask him on Monday.

And about dinner.  I just tasted the sauce and meatballs, oh my goodness, I will have to post this recipe.  How delicious!  And so easy.  Stuart loves meatballs but I always hated making them.  Now, with this recipe, I can make them much more often.

Turns out Penelope can’t eat the sauce at all.  She can’t eat beef either, or tomato products.  (I think the tomato products may just be because of the pregnancy and heartburn, but I’m not sure.)  Chris, is going to make her some pasta with a little chicken, spinach, pesto….  Yes, as I said he can cook!  She won’t know what she’s missing though, these meatballs are wonderful.

Awake….still awake.

On By WendyIn Chronic Illness8 Comments
image by CartoonChurch.com

I’ve started writing two posts in the past two days but feel like the words are all coming out jumbled, or I’m just rambling on.

I’m still having a difficult time sleeping.  So as I write this completely sleep deprived, please over look any errors….or stuff that just isn’t right.

I realize that I hate going to sleep.  I hate the process of falling asleep, I hate the dreaming, I hate the waking…

Ok…so I don’t really hate it, but I don’t have good feelings about any of it.  Most of the time when I’m falling asleep I get the sensation that I’m starting to have vertigo.  I’ll feel like I’m spinning and falling, and I’ll jerk awake, this happens over and over until I’m so shaken I just lie there with my eyes open staring at anything that is still and I know will not move.

I often have nightmares.  Some are just unsettling, some are very frightening, and many are so sad I wake up with tears running down my face.

More often than not lately I wake up with a migraine.  Some days I wake up feeling a bit spinny, but most days my head is killing me.

So with all of this, would you want to go to sleep?

How do I get over these fears?  How do I stop the sensations I get as I’m falling asleep?  How to I at least reduce the nightmares?  How can I ensure I won’t feel worse when I wake up?

Yeah, I don’t know either.

It’s nearly 5am.  We have guest arriving tomorrow around noon.  I need to sleep so I’ll be up when they get here.

A dear friend of mine is pregnant, unfortunately she is having complications.  She and her husband live on the coast, so they need to be as close to a good hospital with a Neonatal ICU (NICU).  The University of North Carolina’s hospital has one of the best NICU’s.  (or so I’ve been told)  Luckily, we live pretty close to UNC.  So friend and her hubby will be staying with us for a while.  She has preeclampsia, and high Cerebrospinal Fluid Pressure (I can relate with her there!)  Right now she’s heading into her 31st week, they are trying to get her to 37.   So they could be here for a while.  I’m glad, and nervous.

I don’t know a lot about pregnancies, especially not pregnancies with complications.

If anyone can answer some of these questions I’d appreciate it.

She’s on bed rest.  Do you think she can climb the stairs?  Unfortunately, we just found out that the shower in our guest bathroom is not working properly.  If a woman is on bed rest, can she take a shower?  Or does she need to have sponge baths?  We have a shower in our bathroom, but it’s not very big.  I even feel a bit cramped in there, I’m not sure if a very pregnant woman will feel comfortable in there.  The only other shower is downstairs.  Which do you think is the best option?

Do you know of anything I can do to make them more comfortable?

Since she’s on bed rest, does that mean she’ll need to stay in bed, or will she want to move to the couch during the day?  (another trip downstairs)  We only have one cable box, and right now we have it in our room, it’s been in here since my surgery.  However, we rarely watch it.  I’m thinking we could put it in their room.  I’ve ordered a book she’s been wanting, bought a magazine she likes, and some snacks I know are her favorites.

Luckily, I have dinner ready to go in the slow cooker in the morning, it’ll be done by late afternoon.  (Meatballs and Spaghetti sauce.  In the slow cooker, how cool is that?)   Oh crap, I just remembered, she’s lactose intolerant, and my meatballs have Parmesan cheese in them.  Well, I’ll have to think of something.

Any suggestions on how I can make things easier on the husband?  I know he has to be stressed, he hasn’t left her side for weeks.  He’s usually such a laid back guy, I just can’t imagine him really being stressed, but then I can’t imagine anyone not being stressed under these circumstances.

Stuart’s worried he will go crazy having people here for possibly 6 weeks.  (hopefully, 6 weeks, we do want that little baby boy to be as close to term as possible.)  He’s also afraid of the extra expense it’s going to be feeding two more people.  And now that I remembered she’s lactose intolerant, that throws a wrench in some of our normal meals.  (I really like cheese.)

So that’s what’s going on in my house right now.

I had much more to talk about, but these are the most important issues right now.

Oh sleep, perchance to dream….but please be good dreams.

 

Living with Bipolar Disorder.

On By WendyIn Chronic Illness20 Comments

I would like to write more about my other chronic illnesses, not just Meniere’s.  It’s just that Meniere’s has ruled my life for a long time now.

Today, I’d like to discuss what it means for me to live with Bipolar Disorder.

First I’d like to explain there are different types of Bipolar Disorder.  (Formally known as Manic-Depression)

Bipolar Painting - J FLoRian Dunn artist (http://fineartamerica.com)

The following definitions of the different types of Bipolar Disorder is copied from the Mayo Clinic website. You can find the entire article here: http://www.mayoclinic.com/health/bipolar-disorder/DS00356  It’s a very interesting article if you want to know more about Bipolar Disorder.

“Bipolar disorder is divided into several subtypes. Each has a different pattern of symptoms. Types of bipolar disorder include:

  • Bipolar I disorder. Mood swings with bipolar I cause significant difficulty in your job, school or relationships. Manic episodes can be severe and dangerous.
  • Bipolar II disorder. Bipolar II is less severe than bipolar I. You may have an elevated mood, irritability and some changes in your functioning, but generally you can carry on with your normal daily routine. Instead of full-blown mania, you have hypomania — a less severe form of mania. In bipolar II, periods of depression typically last longer than periods of hypomania.
  • Cyclothymic disorder. Cyclothymic disorder, also known as cyclothymia, is a mild form of bipolar disorder. With cyclothymia, hypomania and depression can be disruptive, but the highs and lows are not as severe as they are with other types of bipolar disorder.”

There is much more to know about Bipolar Disorder, but I won’t bore you with tons of details when you can look them up.  I know most of my readers like to research things.  This post is more about my experiences being Bipolar.

I have Bipolar I disorder.  When I would have an episode, it disrupted every part of my life.  I lost jobs, relationships, once I lost the place I was living, and I almost lost my life more than once.  During my episodes I would have periods of lost time.  Once, I couldn’t remember almost a month of my life.  Most of the episodes when I lost time were episodes of mania.

The depression episodes, sent me into the deepest darkest caverns of despair.  I was convinced no one cared, and the world would be better off without me in it.  I was in such agony, and couldn’t see any way out of it.  I thought of suicide many times, and attempted it more than once.  One time I came very close to succeeding.  I was involuntarily admitted to a mental hospital for nearly 3 weeks.  My best friend of 9 1/2 years and roommate decided she couldn’t take it and moved out the day I was released from the hospital.  I lost my job.  There were a few jobs where I lost control, was convinced my co-workers or boss were out to get me, and I walked out.  With nothing to fall back on.

The mania was at times sweet.  (this causes many not to stay on their medication, they miss the high of mania)  I would have creative binges.  I would paint for days on end, often not eating or sleeping.  But it had extreme down sides.  While in a manic state I didn’t think anything could hurt me.  I tried drugs, I had risky sexual exploits, I spent money I didn’t have…  During one manic episode I bought a Jeep, had the people at the dealership take the top down before I left the lot, and then drove to Washington, DC to meet someone I’d only talked to on the phone, or emailed.  He did work for the same company I did, but in a different city.  No one knew where I was going.  I was lucky, when I think of what could have happened, I shudder. (BTW – it took me a long time to figure out how to put the top on my Jeep) I would get credit card bills for things I didn’t remember buying.  I loved to treat people when I was manic, and I loved to buy gifts.  I would meet people who knew me, but I didn’t remember them.  By the time I found out I was Bipolar, I was facing bankruptcy.

At times I did what’s called rapid cycling.  I’d be low one moment and high the next….over and over.  It was mind boggling, and very scary for others around me.  I couldn’t keep friends.  Mania can turn to anger quickly.  I pushed people away, sometimes during awful fights, when I’d say things I didn’t mean.  I was cruel.

While depressed I was convinced things would never get better.

I was originally diagnosed with Bipolar disorder in my mid 20’s, after a suicide attempt.  Then a year of two later, I was told they were wrong, all my symptoms were caused by hypoglycemia.  Depression set in and  I was then diagnosed with clinical depression, and put on antidepressants.  These sent me into a major episode of mania.  I was taken off the antidepressants and told I had anxiety disorder, with another medication change, and another attempt at suicide.

This roundabout when on for some time.   One night, I cut myself numerous times trying to get up enough nerve to cut deeper.  Instead I called a suicide help line, and ended up being committed to a mental hospital.  This was the best thing that ever happened to me.  Even though I was once again misdiagnosed while I was there, with Borderline Personality Disorder, the group sessions were very helpful and I was now in the system.  This helped me find a therapist and psychiatrist who understood, and helped me.

After getting on the right medication, my life began to normalize.  However, I had learned behaviors to overcome.  I’d been undiagnosed for so many years, I only knew how to react to situations as I would before. I over reacted to everything.  Not to the extreme I would before, but I only knew to run or fight when confronted with strong emotions.  I did not know how to have healthy relationships.  Finally, after many years of therapy I feel I am the person I want to be.  I don’t blow up (most of the time).  I have good relationships.  I understand that much of what I did in the past was out of my control, but how I live my life now is my responsibility.  And that’s OK with me.

I wanted to add, this is one reason having PMDD/PMS disturbs me so much.  I’ve worked very hard to understand my emotions, and control them.  When I have these hormonal symptoms I again feel out of control, often so quick to anger it scares me.   Scares me more than I can explain.  I never want to the person I was before.

As of this writing, I’ve been stable for over 15 years.  (with only a few minor episodes when my medication needed adjusting.

I started this post on January 3rd.  I do not hide that I’m bipolar.  I’m quick to talk about it, to share my experiences so others may get help.  However, this was a difficult post to write, remembering who I used to be, the people I hurt, the self-destruction…  Mental illness and suicide still carry a lot of stigma.  Let’s start talking about it.  We need to make sure people are not afraid to seek help.  We need to help everyone understand that people with mental illnesses are still people.