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

The Headache, by Kamshubel (from DeviantArt.com
The Headache, by Kamshubel (from DeviantArt.com

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

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

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

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

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

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

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

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

 

Migraines, Vertigo, Disequilibrium, Pain – mix and repeat often

Where have I been you ask?  Or perhaps you haven’t noticed (don’t tell me, I want to think I was missed) I haven’t been commenting as much on other blogs, or chatting away on mine (I know for a while I’ve been a little silent here so you probably didn’t notice), I haven’t even been able to answer emails in a timely manner.  I logged on today and I had over 230+ emails in my inbox.  Normally there are about 30…so how many days has it been??

I’ve been much sicker, if that’s the word to use, lately.  I’m not really sick, it’s my chronic stuff, plus a little oops added in. First I’ll tell about my oops.

I know in my last post 30 things you may not know….. I mentioned how hard it is for me to wash my hair.  It’s normally easier in the bathtub than the shower (I’ve fallen too many times in the shower), but I’ve decided that my bathtub is evil.  I’ve had heart palpitations in the tub and nearly passed out, I’ve slipped a few times trying to get out, once I smacked my head against the wall.  My latest fight with the tub?  I pulled the tendons in my left ankle, and knocked everything out of whack on that side from my foot to my lower back, while I was lying in the tub.  Yes, I said, LYING IN THE TUB!  Only me right?  Ok, it was a little more than just lying still.  I had scooted down in the tub to rinse my hair, then I pushed with my feet to scoot up – my left foot slipped and went in a direction it shouldn’t have.  But I must say, it really didn’t hurt. When I got out of the tub I could stand fine as long as I didn’t go up on my toes.  So I’m thinking, no big deal.  Then Stuart looked at my ankle and said, “Oh My!”.   My ankle was very swollen!!  My lower back hurt, but my ankle really didn’t.  If you touched the swollen area it hurt, but not much.  This happened last Friday night.  On Wednesday the swelling was down and I had a massage, she helped the leg and back, but last night my ankle was swollen again.   (not that I’ve been on it, I had vertigo all day yesterday so I was in the bed.)  So now you know.  I am afraid of my tub and shower….makes it pretty hard to keep up personal hygiene, but I manage….thanks to that darling man of mine.

What else had been causing me frustration and just plan fear lately?  I was supposed to have the Botox shots for my migraines on the 18th, my doctor was sick and they had to reschedule….they wanted to make the appointment in November!  We are leaving for Tucson, AZ the last week on October, we won’t be here in November.  So they scheduled it for October 20th…I cried.  I had the worst time with migraines this past month.  Right before my period started the pain started…they gave me special medication for that time of the month, it didn’t work.  I had 15 days out of 20 were spent in a dark room, often without any hearing device on because the light and sound would make me throw up.  Throw in some vertigo, and we have a great party going on.  Luckily, the appointment has just been changed to October 3rd.  This should be during my period, so it will be a real test.  Big problem now?  If it works I need to have another shot regimen in 3 months, we won’t be here.  I’m not sure I can find a neurologist in Tucson who would be willing to see me just once to give me Botox injections.  Actually, I doubt I will be able to, so it will be more like 5 months between injections.

Recently I’ve been having more vertigo, and constant disequilibrium.  Frankly, it scares me.  I’m pretty sure some of this is Cerebrospinal Fluid Pressure.  We changed my medication that controls the high pressure to a times released form instead of the kind I have to take numerous times a day (I kept missing one).  Since I’ve been on this new version of this medication I’ve been having symptoms like I did when my pressure was too low.  I started back on the regular form of the medication yesterday, I hope this really is what’s wrong.  Because the vertigo is scary.  I’m proud of myself about how much better I’m dealing with it.  I don’t panic as much, I’m sure I would if it was a severe attack.  My biggest fear I have is that when a severe attack hits it will never end.   I’ll give you an example of my days…Yesterday I woke up to the word spinning, slowly, but still spinning…this went on all day.  Luckily, I was able to sleep through some of it.  Then when it actually got to be bedtime, I couldn’t sleep.  So many things going through my head.  I kept thinking, something doesn’t add up….but I’m not sure what…at least I finished Uncle Tom’s Cabin…and still laid awake until 5am.  Today, I’m not spinning, but I can’t walk straight.  I can’t move my head at a normal speed or I will fall down from the disequilibrium.  In the past 48 hours, I’ve been to the bathroom once unaided.

OK…I know this is another venting post.  But I’m scared.  What if the change in medication doesn’t work?  Then why is this happening?  We’ll figure it out, or I’ll learn to live with it!  Right?

The other night I was talking to Stuart and told him that sometimes I envy people who don’t have to feel like I do.  Of course, he said that’s natural, part of self-preservation and all that….  I then told him, I would gladly be the only person in the world who had to feel this way if no one else ever did.  And I mean it.  The thought that others go through this is heart breaking to me.

The Lorax
photo from smh.com.au

I do have some good news about my hearing!  (unfortunately I had to cancel the last 3 appointments I’ve had with my audiologist because I was too ill to go, so I can’t tell you what she has to say, but I have some Wow! news.)  Stuart got The Lorax DVD from Netflix and we curled up in bed and watched it on the computer.   I used the direct link cable and linked the computer sound up to my processor.  I didn’t expect to hear any better than I hear the TV, I thought I’d mostly read the movie, as usual (thank goodness for closed captioning!), but this was different!  I heard the movie!!  I heard the characters the way they were supposed to sound!  I really heard it all, just right!  Isn’t that amazing?  That gives me hope that one day my CI will give me sounds that are normal.  Right now, I hear better with it than my hearing aid, but sounds are a bit off, however, I understand things more.  It’s coming along!  And The Lorax is my new best friend!

 

Day 23

*first….I’m having trouble with my blog, I’ve written WordPress but don’t know what’s going on yet.  I cannot post any images or tags.  Sorry*

Last night I started on Diamox, per doctor Gray’s instructions.  Still talking a little Topamax, I have to wean off of it.

I admit I still wasn’t feeling great in the evening, well I haven’t felt “great” for a long time, but I wasn’t feeling good.  We decided to watch some things on Netflix because I was afraid to go to sleep.  First we watched Donkey X, a silly animated movie about Don Quiote and Sancho as told by Sancho’s Donkey….OK…that’s the very short synopsis, but really that’s not why you are reading this post is it?  Then we watched a number of old Dr. Who’s – the old one’s with Baker…if you are a geek/nerd type then you know Baker is the Doctor who had the very long scarf and the curly hair.  (perhaps the most famous Doctor of all – unless you are under 20, then it would be David Tennet) – again, not why you are reading this post huh?

Finally, I decided to try to sleep.  I have found I feel a bit better if I’m not lying flat.  So I propped myself up a bit and I do believe I was asleep before my eyes were shut!  I woke up about 4 1/2 hours later with a headache in about the 4 range.  A 4!  OK, for those of you who don’t realize what I’ve been going through (here is where I really wish I could post photos), I have been in the 7-9 range for days.  Occasionally hitting a 6, and if I hit a 5 I was pretty doped up!   I was so happy.  I thought, “Yes, this is going to work!”  Then I thought, “Well, this means I definitely have high pressure.”  You see, if I didn’t have high CSF (cerebrospinal fluid pressure) this drug would have made me feel much worse, so I took a great risk taking it, but I was willing to try ANYTHING!

I decided, to try a little experiment and lower my head a bit, I woke up at about 9:30am, and my headache had climbed to about a 6, I should have taken a pain pill, but didn’t want to do that on an empty stomach.  Unfortunately, I didn’t trust myself to go downstairs to get anything, and Stuart was too exhausted to get up yet.  So I went back to sleep.  When we woke again, my head was back to an 8.  Stuart made me some breakfast.  I ate, took my morning medications.  Including the Diamox and the little bit of Topamax.  Shortly afterward the world started to spin.  Luckily, if I stayed very still on my right side it was almost still.  So I dozed.  But if I tried to move it went crazy again!  (and oh how I had to go to the bathroom! Isn’t that always the way?)  This last over 2 hours.

My headache has been around 7 -8 most of the day unless I took a Maxalt or Hydrocodone, then it would ease to a 4 or 5.  But I feel much more dopey when I take those than I used to.  I wonder if they Diamox makes them more potent, or if it’s just because I’m sleep deprived.  Unfortunately, often when I try to sleep I start to spin.  That just happened a little while ago.  I gave up and decided to update all of you.

All and all, I take last night as a good sign.  Perhaps we can get this medication worked out and I can at least get things under control enough so I can get out of bed!  It’s horrible.  I have 2 people living in my house and I haven’t seen them in days.  I’m still lonely.  It’s sad really.  But it’s hard.  People don’t want to intrude when I’m like this.  I admit I don’t like for people to see me when I’m having a vertigo attack, or in horrible pain…but I am lonely.  Thankfully, I do have Stuart, and he tries so hard to keep me entertained.  : )

I’m not crazy about being on Diamox.  The side effects aren’t fun.  Well, two in particular.  One is this tingling sensation.  Kind of like when your hand or foot starts to go to sleep, but not quite..and it’s just an icky feeling.  The other is brain fog.  Often very intense brain fog.  So we’ll have to see if I can deal with that.

I will say, either the Topamax or the Diamox  (these two drugs are in the same class) is already reducing my appetite.  Thank goodness, I needed that!  I weighed in at the doctor’s on Wednesday at 200.9 lbs.  I NEVER thought I’d ever see 200lbs.  I’m only 5′ 4 1/2″.  I do realize it was the day before I started my period, and I was fully clothed in jeans and tennis shoes, but that should only take away about 5lbs.  I was happy today to feel like my appetite was much more back to normal.  Ever since I started having trouble with this fructose intolerance I’ve been so hungry.  Having cravings I just couldn’t satisfy.  Top that off with not being able to exercise.  I gained about 55 lbs.  Now it’s time to take that off!

Anyone out there want a weight loss buddy?  As soon as I can do any exercise at all I will be easing into something slowly.  Stuart surprised me, he’s looking into getting a therapeutic pool.  I don’t think we can afford it.  But it sure would be nice.  First things first, I need to get this vertigo under control first.  Can’t be getting in water when I can’t see straight.  : )

OK, as you can tell, I am sleep deprived and just rambling.

with no photos…my posts are a bit boring huh?

I leave you with this…..

Draw the Shades Today
Migraine Pain Robs One of light
New Meds Can Give Hope

Quick update…well, perhaps not so quick..

Thought I'd share a sketch from my journal I drew last week. She looks a little sad doesn't she?

I planned for this to be just a quick update…because I know you are all just sitting at the edge of your seat. haha
but I got carried away…*sarcasm coming*…but that’s just so rare. : )

Stuart had his second interview today, and he had to take a test {shudder}, should know something very soon. (Hopefully today, but no later than tomorrow I would think.)

About me…heck, I just don’t know. Hearing is way down. Not hearing from left ear…although the tinnitus sounding like static woke me up! Don’t you hate that???
Even my right ear is down a bit.
Not having vertigo, but feel off, light-headed. Often feel like I’m about to have a vertigo attack, take meds and it goes away.
Pain is minimal now. The LP site is still tender and has a small welt, but I know that’s because I had 2 within a week.
Still not feeling like I can do much. Mostly in bed. (rolling eyes here…oh, don’t do that..you dizzy headed girl!)
Went to the store, just one mile from our house, day before yesterday. To get one thing. Got home and collapsed, did not feel good at all.
Yesterday I had a couple of visitors for a few hours. It was so nice. A friend and her 1 year old came for a visit. While they were here, I just pushed everything aside, and enjoyed the moment. That child is such a happy kid! It meant a lot to me, I don’t have many visitors.
It wore me out a bit, but it was magical while they were here.
I am so not in the loop with my “friends” any longer. I didn’t know one is pregnant. (well, really I’m not friends with her, but her husband used to be close to us, before they got married…it’s strange) She’s due in February.
I didn’t know another couple had their child last week. Are these people really my friends any more? I just don’t know….

I hate to admit it, but I’ve been pretty depressed lately. I keep telling myself that I’ll take things as they come, and just roll with it. If life isn’t what I expected, change my expectations. But having the hope…the reprieve from all of this for months, and then it all coming back…well, it’s hard. I’m grieving, I know it. Does that mean I’m giving up? I just don’t know.

Those who have been reading my blog for a while know all the major plans I had when I was better. I really thought things would stay that way! I bought a car!! The cutest car in the world. Now, I can’t even drive it. I stated gardening, and it mostly died because I couldn’t keep it up. I was going to be a Mom. Now I won’t.

I wasn’t going to talk about all of this. I’m still hoping things will get better, but some of these things won’t change. No matter how much better I feel again, I will not pursue getting a foster child. I cannot take the chance it will happen again. I’m not even sure I’ll commit to a garden again. Too much expense, time, and effort to just watch it die.

The hearing loss, do I move on and find a way to live in the non-hearing world. I’ve joined an email group that is composed of people with severe or total hearing loss from Meniere’s. They all seem so well adjusted. But some things are so hard to hear. Most have no friends from before their hearing loss, only friends that they’ve met afterward. I simply don’t want to be to the point that all I hear is this damn noise in my head!
The other day i laughed, I had been all teary about things I can’t hear, like the cricket and things chirping on a summer night…then I realized, I hear that sound a lot, even when they aren’t around. I had to laugh. It’s the only way sometimes.

I was able to connect with my Psych today via email. I told him how I felt about things. How depressed I am, and all that stuff. He doesn’t normally use email because of the lack of confidentiality. Yeah, I don’t care who knows about me and my stuff. I know it’s ethical, and he should be that way, but certain concessions must be made for the hearing impaired! Dang-it! We’ll see how this turns out.

Once again, I’ve bared my soul.

thank you all for listening.

How my life has changed….and the straw that made the camel’s back snap.

First, I’m feeling a bit better physically today.  Not as much pain, and not having that weird feeling you get after being sedated.

This is the first time after having this procedure that I do feel like I had surgery.  (I may have mentioned that yesterday.  Forgive me if I did.)

Over the past couple of years my life had changed A LOT!

My biggest health problem went from being my hip, to the Meniere’s.

Almost everything in my life has changed dramatically starting in the winter of 2009.  That’s when the Meniere’s came back full force, and I went bi-lateral.  By April of 2010, I was getting the Endolymphatic Shunt Surgery in my worst ear to stop the attacks from happening every day.

It worked, for a while.  By October of 2010, I was ready to talk about the surgery for my left ear, the attacks had returned, happening many days per week.  That’s when I was asked if I’d be interested in the research study.

And if you’ve been following this blog you know the rest.

But just how has all of this changed my life?

  • I wasn’t working when this started because of my hip, but planned to go back to work at least part time.  That isn’t going to happen.
  • I had a little reprieve from my symptoms earlier this year.  For 4 months.  I was almost normal.  I took it for granted, and keep looking for the magic button they pushed to make it better again.
  • I’ve lost a good part of my hearing.  I can’t hear in my left ear, and even with my hearing aid it’s a bit off on the right side.
  • I don’t know how to be a friend to my old friends any longer.  We did things, went places, … you know things you do with friends.  I can’t do most of these things now.  Even when I am feeling better, my hearing is so off, I find it very difficult to spend time with people unless it’s one on one.  Restaurants are horrible, Malls…no way, parties are often torture.  Even just having one person, if they aren’t in front of me talking straight at me, it’s hard.
  • A friend recently told me that she was hurt that I didn’t put more effort into our friendship especially during my good period.  I look back and realize, I didn’t do much with any of my friends, I tried a couple of times, but my hearing was still such an issue.   And people were very busy because, life went on without me, and I was crazy busy, because, life was restarting for me.  It was difficult to get back in the swing of things, by the time I finally felt I was finding my footing….it all came crashing down again.  I look back and think…if I had known this would happen, I would have spent that 4 months much differently.  (certainly not spending most of it trying to become foster parents!  That’s not going to happen now…but I didn’t expect to only feel better for 4 months.  So most of that time, we spent wrapped up in trying to be parents.)
  • So I realized, I don’t know how to be a real friend to the people who were my friends prior to my illness.  I try hard not to have my illness be my life, but in a big way it is.  I have to think about everything I do….how will it affect me, and my illness.  How much will it take out of me.
  • When I do see my friends I try to look better.  I get out of bed, if they come over, put on something decent (even a bra!) and at least make it to the couch.  Lately, that’s a very big deal.
  • When I was feeling better and driving, and would try to meet my friends, I was scared.  I hadn’t been spending time with most people for a while, and I was uncomfortable, talking with them, trying not to talk too much about me.  But my life was changing so much, that was hard.  And now, my life is static, and it’s even harder.
  • Many of my friends don’t like to email, text, or IM…and right now that’s the only way I can communicate.  So it’s hard.
  • I can’t keep my house as clean as I’d like.  We decided to get cleaners to come in, but that might not happen again….(more about that later).
  • I feel like I really needed some time away from here..away from this house…..just a change of scenery.  I was scared about seeing my friends in Tucson, how they might react to my hearing, and health issues.  But we’ve been emailing and texting…so I don’t think it would that big of a deal.  My best friend there is Japanese, so she has a hard time communicating too, I think that makes her more understanding about my communication issues.  But, the trip isn’t going to happen.  (again, more of that later.)

I’ve been feeling like I couldn’t post a lot of things lately.  Things that have really been weighing heavily on me. (like not knowing how to be a friend….I don’t want to be just the “sick friend” people tolerate.  If I’m your friend, I want to be more than that.  And right now, I don’t know how.  I can still listen and try to give advice (if you are willing to “talk” with me by writing.)  But it does seem to take a lot of the personalization out of the situation and I know that’s hard.  I realize how hard these things are for my friends, but I wonder how many know how hard it is for me.

They have their busy lives…I get to watch the world go by without really being able to join in…they can work, exercise, have children, go to dinner parties, go shopping….things normal people do.  I can’t.  And it hurts…down deep inside…that I just can’t.  I don’t fit in.  And I don’t want to be pitied.

Oh, and our house is only 4 years old, and we have to get a new toilet.  For the master bathroom.  They said it would be cheaper than fixing it.  It broke where the tank and the seat are connected.  So one night I went downstairs, and found water everywhere.  So I’m worried about possible mold problems.  I’m being shrugged off about it.  Just put a little Kilz on it….on the ceiling downstairs, yes…but what about between the upstairs floor and the ceiling downstairs?  We had to move from a rented house once because of mold…I don’t want that to happen with this house.

Another straw landed on this Camel’s back today….I think I heard it snap!

Stuart was told his job will end in one month.  They’ve decided they can’t afford him.  *sigh*

He has an interview tomorrow.  But this breaks my heart.  I feel like he will feel he has to take the first thing he finds that pays anywhere near enough, just so we can survive.  I can’t help.  I can’t do anything to bring in some income.  I really want to do something.

This sucks.

But surely, it will get better from here.

Things have to go up from here.

I feel like I’m one of those old cartoons that have been flattened by an anvil…..now just peel me up and pop me out…and things will be better!!

Oh heck, we’ve been through a lot, we’ll get through this.

Life is changing again.

Perhaps it’ll be fun.

More Patches Finished; and 10 Tips by Toni Bernhard.

I’m home from the hospital…again.  We got home around 2:30pm.

The procedure went well.  As you may recall, last week when my pressure was tested it was at 15 (very low for me….can be normal for others.)  Dr. Gray added some Cerebrospinal Fluid (CSF) to find out what level I feel my best at, it was 20.5 (this is high for some people.)

We were hoping that by taking me off all diuretics, and having me drink a lot of fluids, my pressure might remain at my optimal level.  Unfortunately, this was not the case.  By the second day after the last Lumbar Puncture (LP), I was feeling bad again.

Today, I went in for another LP, and probably patches (depending on what my CSF pressure ended up being.)  My opening pressure was 16.5, pretty big drop from the 21.5 I had just one week ago.

So they patched me up.  They used a new form of the Tisseel (adhesive for tissues), that is supposed to be much easier to work with and is less likely to set up before it completely covers the leak..  (a problem they had before.)

From what I understand I had 8 patches, but on 6 punctures.  Meaning, 2 of the times they put the needle in they were able to reach 2 leaks instead of just one.

I’m still forever grateful to Dr. Gray for adding me on today.  She was supposed to be off today, going on vacation.  However, she really wanted to get me in before she left, so I will have a good chance of going to Tucson for my father-in-law’s wedding.  First, it was supposed to be just one patient today, then it turned in to 3.  I feel so lucky to have a doctor who is so dedicated to her patients.

I am extremely sore!  Perhaps, sore isn’t the right word…I am in pain!!  My lower back…OUCH!  I’m sure part of it is because I was still sore from the last LP.  I think it’s going to take a little bit longer for my back to feel better, but I DO NOT have a headache!  I’m a tad dizzy, but I think it’s the pain medication, not my normal spinning.

Let’s all hope, I NEVER have to do this again!

 

I saw this wonderful list, 10 Tips from 10 Years Sick.,written by Toni Bernhard ( author of How to Be Sick: A Buddhist Inspired Guide for the Chronically Ill and Their Caregivers.):   You can read her post in its entirety at KevinMD.com, but I thought I’d give you a run down of the 10 Tips.  However, you really should go to the article, and read her explanations – all comments written after the tips here are my own, unless other wise noted.

1. Take Time to Grieve your Old Life, the Create a New One.  – I have found that this comes in stages, or waves, like normal Grief does.  You will feel like you’ve gotten through the grief, then all of a sudden it hits you again.  You all know I’m a firm believer in…well, this isn’t the life I was expecting, so I’ll expect something new.  I have to look at things differently….  If you are a steady reader of my blog, you have seen the many times that my grief is still there.  Just yesterday, I got a bit choked up while practicing sign language thinking of the things I may never hear again.  But I have the wonderful opportunity to learn a new language and meet all sorts of new people.  Oh the things this could lead to!

2. Friendships are affected by illness, often dramatically.  – Have I learned this the hard way or what?  It’s very hard for me to accept this, but all of my friendships I had before my illness changed.  Some have ended, some have continued but it had to change, I’m not the same, and can’t do the same things.  (and that’s hard on both me and the friend.)

I like this statement that Toni makes, “As for friends who haven’t stuck around, our friendship may have faltered for any number of reasons—their discomfort about illness, my unreliability as a companion. I know they wish the best for me, and I wish the best for them.”  I’d like to add, I realize now that some of these friendships would have faltered even if I had remained well.  Everyone has friendships that falter, not just the chronically ill.

3. Illness is the great equalizer.  Anyone can get an illness.  There are not boundaries it will not cross.

4. Trust your judgment regarding what you can and cannot do.  (and give yourself a break!  If you can’t do something, don’t feel obligated to do it anyway, don’t feel guilty…trust in yourself, and know your limits.  Take care of YOU.)

5. Find beauty in small things.  I don’t think I need to add to this.

6. Cultivate gratitude.  This may be hard to do… especially on rough days.  (read part of Toni’s list, I thought…yeah! I’m grateful for that too!)  I suggest you sit down and think of things you are grateful for about being ill.  The list may be short in the beginning, but keep adding on to it as you think of something, or when something happens.  Some of the things on my list (that I’m just beginning) is: 1- how wonderfully my husband has handled my illness and all the help he gives me. 2 – that I don’t have to cook every night (yes, I love to cook and miss it sometimes, but it’s nice that dinner isn’t always my responsibility any more. 3 – the opportunity to “meet” so many wonderful people through my blog, and other’s who understand and “get it” 4 – If I have insomnia, I don’t have to worry about getting up in the morning…..  I’ll keep adding to it, and think I’ll try to re-read what I’ve written when ever I feel like my illness has caused nothing by trouble in my life (perhaps I should read it more often than that, to try to keep those feelings at bay.

7. Some days you’ll just plain feel weary of being sick.   Isn’t that the truth!  But normally, I can, eventually, push the weariness aside, and get on with my new life…or simply be grateful I have a life.

8. A loving caregiver is to be treasured.   This is very important to me!  I try very hard not to take advantage of my husband/ my caregiver.  I hope he knows how much I treasure him.  I wish everyone who was ill, had a loving caregiver, I know I’m very lucky to have mine, and honestly don’t know how I would get along without him.

9. We’re fortunate to live in the Internet Age.  This I am very grateful for.  I have more support from my cyber friends than I ever thought would be possible.  I never thought I could have such touching relationships with people I’ve never met in person.  Also, imagine what it would be like if we couldn’t look up things about our illness?  How could we possibly be a good advocate for ourselves, if we couldn’t find out this information?

10. This is just my life.  I try to say this when I say, so my life isn’t what I expected…I’ll change my expectations.  However, I do feel Toni, says it better by quoting Zen teacher, Joko Beck: “Our life is always all right. There’s nothing wrong with it. Even if we have horrendous problems, it’s just our life.”  She adds,  I find great solace in these words. Not everything can be fixed—perhaps not even my health.  (I agree, and have found that once I accepted this, life got much easier.)

I hope you enjoyed this list as much as I did.

 

More patches to come.

Just a short note.

I’m already feeling icky again.  Dr. Gray wants to try to get me in next week for more patches.  Hopefully, it will work out, but we all know how, her wanting to get me in next week has turned into a month later before.  That’s the bad side of having such a good doctor, she is in high demand.

I know many people are thinking…Dang, can’t they get this right?  Why so many patches?  ect.

From everything bit of research I can find on Cerebrospinal Fluid Leaks and Patching them, it often takes a number of times.  This is a tricky thing they are doing.  Sometimes the patches simply do not adhere to the entire leak, sometimes, they end up being too thin and it breaks through….there are many variables.  Sometimes they just don’t work, and some people end up having to have surgery.  (luckily the patches normally work…eventually.)

So we’re not giving up yet!

 

She’s Low – Again…

Hope you don’t mind, but so I don’t have to tell the story over and over….you know how it gets.

Here’s a copy of the mass email I sent out to friends and family last night:

I had a lumbar puncture today. (as you know I haven’t been doing well for the last few months.)

The doctor expect to find that I had high Cerebrospinal Fluid (CSF) pressure.  She said I had “high symptoms”, so we go in expecting my CSF to be high.  Surprise, it was low.  Lower than it has ever been.  (this was my 6th LP).  She decided, since I had so many symptoms of high pressure, she was going to take some CSF out to see if I felt better.  The more she removed, the worse I felt.  my head started to hurt so bad I couldn’t stand the light in the room and I was getting nauseous.  So she put back in all the fluid she removed, and started adding more.  5cc’s at a time.  She ended up adding 15cc’s extra.  (they said that’s a lot)

My pressure went from 15 to 21.5.  Now they have a number that I feel my best at. if they check me again, they know something is amiss if I’m under or over 21.5.

So right now, I have been taken off all meds that might lower my pressure.  I have to drink a lot.  (I think I already do, but she said more!)  Trying to keep my pressure up without having to do more patches.

I’m hoping that we can at least keep it up long enough that I can attend Stuart’s dad’s wedding.  If it drops after that, I’ll be seeing Dr. Gray again.  She compared the two myelograms (CT scans done with contrast that shows leaks) that I’ve had.  One from November 24th, 2010, the other from August 22nd, 2011.  She said there were no real new leaks, the leaks came from the same places.  I was just breaking through the patch matterial a little on some, or perhaps the patch didn’t cover all of the leak.  Also, from what I understand they didn’t patch them all for fear of making my pressure spike too high.  She said she saw 2 spots she knows she would want to patch if my pressure drops again.

Unfortunately, she said I’d probably notice the results in a week or so, then I could just come in and get patched…but it often takes a month to get in to see her.  That would put a bit of a kink in a trip to Tucson.

So I will drink many fluids, and stop avoiding caffeine so much.  (caffeine can raise your pressure)

Thanks for all the healing thoughts today, I felt them all.  Really, I did!  I think it’s amazing that so many people were thinking of me at the exact same time!  How Awesome!

One last thing  Other than my back hurting a little, I feel great!

That’s how the email ended…then later that night…

The tinnitus started getting loud again, and my hearing kept cutting in and out. (well, the hearing in my right ear, how would I notice in my left ear…unless of course if it came back.)  It was so strange, I’d be listening to Stuart and all of a sudden I couldn’t hear him, then I could, then I couldn’t…We put a new battery in my hearing aid, and Stuart even listened through it for a while to see if it would cut on and off…nope, it was me.

Now today, I still have a buzzing tinnitus that’s a bit louder than I’d like, but I can hear again…not off and on.

Strangeness.

Found a cool article about it…it starts out “A decrease in cerebrospinal fluid pressure may result in an endolymphatic hydrops ….”  Well, that’s interesting.  The case study isn’t like my case, but it’s interesting just the same.

Now, let’s move back to my first arrival at the hospital…

When we arrived to check in we were told I had an appointment on the 17th, but not the 11th.  Stuart explained, that he spoke with Dr. Gray and she had a cancellation on that day, and said she could see me sooner.  The person at the check-in desk got on the phone, and we stood there and waited.  I started to cry, but think I hid it well.  She asked us to wait in the waiting room while she tried to find something out.

I broke down.  I told Stuart that if I didn’t see Dr. Gray that day, I wasn’t coming back.  I’d call Dr. Kaylie and tell him, I was finished with all of this, and we’d have to find something else.  I wasn’t going to continue to wait months and months to see this doctor for a glimmer of hope.  (yes, I know, probably a bit extreme, but if you’ve been reading this blog, you know I have been scared and my emotions have been raw and on edge.)

Finally, they said I did have an appointment, but Dr. Gray was running late.  Very late.  My appointment was at 3pm, and they didn’t get started until after 5pm.  (I think they messed up the scheduling and I didn’t have an appointment, but Dr. Gray decided to see me as the last patient.)  But at least I got in there, and I know something now!

I’ll share with you the first doodle I did in the waiting room:

Little Miss Sad Mad

As you can tell this little lady (my inner self) was very mad!  Gnashing her teeth, sparks flying from her head…I wouldn’t want to be in her way!!  On the other hand, look at the eyes, they are very sad…poor thing so conflicted.
My next doodle was much more…well, just a doodle, but Dr. Gray saw it and just went on and on about how I was hiding being an artist…and how much she loved it…so I gave it to her.  She hugged and kissed me.  (maybe if I need another appointment, I will use a drawing as a bribe to get in sooner!) hehehe
I’ll keep you posted as my symptoms change.  (headache is barely there today!!!! and I’m not dizzy!  Woo Hoo!)
I’m sorry I haven’t been keeping up with my reading and commenting on other’s blogs.  I will try to catch up soon, I promise!  Hope it’s all good news.
Thank you all again, for the caring comments, thoughts, notes…ect.  It means more than I could ever express.

Time to say something again…but what?

My Headache Guide, showing manipulated photos of me to help the doctors understand my pain. I shared this with Dr.D today and he asked to keep a copy. I'm glad he understood it, and thinks it works. My therapist saw most of it on my other blog, and she loved it, so I decided to print some out.

**I’m sure I should proofread this, and fix many things…but you are getting my stream of consciousness, as it came out, at the wee hours of the morning, when I can’t sleep….if it’s too crazy, just let me know…and I’ll do something with it.

Let’s see, what has been happening since my last post, what do I want to share?  (other than the headache pain scale)

I know!

I had an appointment with my psychiatrist a couple of weeks ago, he feels I need more of an antidepressant.  Given everything that’s going on, he’s concerned the depressive side of my bi-polar disorder will rear its ugly head.  Trouble is, I’ve tried just about everything.  I usually have side effects, or some drugs don’t work with others I have to take, and some just didn’t do much.  So he put me on a brand new antidepressant on the market…Viibryd.  (I think I may have mentioned this.)  I took it for 4-5 days and had the most violent diarrhea ever!  As I told my doc today, “I had to have an ice pack between my cheeks.”  He looked so sad.

This is another doctor I love.  I’ve been seeing him for 8 or 9 years.  Today he looked at me and said, “I think you need to fire me.”  Uh, NO!  I asked what could someone else do that you haven’t done, and you know my history.  I told him, I think all my emotions right now are valid, he agreed.  I said that I believe you really have a problem when you are having in appropriate emotions to things.  He shook his head yes.  I also mentioned that he told me once that I’m so in tuned to my body and my bi-polar illness I can tell immediately if I’m going to have trouble, if I’m the slightest off, and I call on him.  He again, agreed and said no one else he sees will do that.

Then he looked at me, and said, but I care so much for you, I want to take the edge off of some of this pain, and don’t want you to end up in the deep end.  He said, how about a second opinion…I hesitated.  (I’ve really had some horrible experiences with psychs in the past, and am very afraid to go see anyone else.  I’ve known Dr. D for so long, I call him by his first name, I know his wife, I’ve met his child….I was with him when he had to deal with his brother’s suicide.  (they do think it was accidental.  He was very sick and on a lot of medication…and simply took too much.)  But that takes a toll on someone.  And he didn’t have to tell me.  He’s open and honest with me.  (I don’t think he’s like this with everyone, but we’ve been together a LONG time, and have a very special relationship.  He understands with me, that I’m better with a professional psych person if they share some of them with me.  If they trust me with that, then I can trust them.)  I don’t want to see anyone else!

So we compromised.  He got my permission to share my file with another doctor there in his office and ask if they have any suggestions.

(during all of this, I actually had to lie on his couch because I was so dizzy, had a headache, and my ear was roaring….I actually thought it amusing that I actually lied on the psychiatrist couch…how Freudian.

Oh, I did tell him, if we find out I have high pressure he could put me back on Topamax, I might be stupid for a while, but at least I’d lose weight!  He mentioned when I got there that I’d gained weight…I said “that’s not nice.”  He looked taken aback, then I laughed.  yeah I know..but not really, it’s just moving around since I’m so sedentary..losing muscle mass so the scales are so bad, but the look…is not pleasant.  (I looked in the mirror today and thought, “are you really sure you aren’t pregnant?”….oh, I remember you must have sex for that..so guess not!)

Dr. D decided to raise the dose of the Lamictal I’m taking.  It may knock the edge off.

So what do you do when a doctor that you love and trust, says they are stuck with you?

I feel certain we’ll work out something.  But I can’t imagine leaving Dr. D.  When we moved to California for a couple of years and I had to see someone there…Oh My Goodness…that woman was a quack.  She saw people in a group.  Uh, not ok.  And she prescribed Seroquel for me, just took me off of things that were working….Here this is better, it works for both the ups and downs of bi-polar disorder.  Yeah, it made me sleep ALL THE TIME…so no I wasn’t manic or depressed, I was doped out of my brain!  And she didn’t want to take me off of it!  Not cool.  I asked to see someone else in that group..he was better, but not D.

I have much more to talk about.

Like, how I’m not dealing that well with being bed bound!  How my headaches are worse.  How I hate being such a burden.  How I don’t like my marriage like this.  How to keep a caregiver from burning out, or letting you become their everything?

Let me share the name of my new possible diagnosis….This is not definite, but it’s a mouth full….Intercranial Hypertension with Spontaneous Cerbrospinal Fluid Leaks.  Ummm, yeah, what they said.

Still seeing Dr. Gray on the 17th, have asked for something more to help with my headaches for the next 10 days!

Still drawing, and creating something every day.

need to scan some things and put a post on my other blog.  (think you’ll like my NeoPopRealism style self portrait…I think she’s a hoot)

I’m not sleeping well.  Look, it’s 5am! Still haven’t been to sleep.  I have to wait until I’m so exhausted, nothing could keep me from falling asleep, then I can sleep.  Why?  I’m scared to go to sleep.  I’m afraid I’ll wake up feeling even worse.  Or that I’ll die in my sleep.  (this fear started after I had the drainage from my ear recently because of the infection.  I was so afraid it was CSF fluid.)  I’m really hoping this will get better after the next appointment.  Even if they can’t fix everything at once, I just want to feel better….just a little.  I’m not asking for a lot really.  It’s ok, if I never can drive again, or work, or get a foster child, or have a garden…yes I want time, but I can deal without them.  Just let me be able to do something out of bed, and not be in intense pain the whole time, or feeling like I’m going to fall down with every step.

(I actually used my walker in a store the other day, I’ve never used it out of the house before.  (I just used Stuart or the cart to help.) I was proud of myself for using it, but it was difficult, and it’s nearly impossible to back up!  Think I might try to use the store’s little scooter next time…but that will probably make me too dizzy.

So we have a few things to talk about.

I think I’ll talk about caregivers next time.  How they feel, how to help them, and how we as patients feel because we have to use them.  (I’m trying to get Stuart to write a guest post about this, and would love is anyone else would be interested.  If it would help, I could come up with a list of questions.)  Perhaps, this will need to be a series, not just the next post.

 

OK, I’ve stopped my ramble for tonight/this morning.  Feel free to tell me to never post while being this sleep deprived again!

My health and kindness be with you always.

wendy

 

The Ball’s Rolling now

Ball Rolling in Hole by W. Holcombe

Saw Dr. Kaylie on Tuesday.  I have an ear infection.  Again.  Who knows why.  He thinks the tube is beginning to irritate my ear because it’s trying to come out…and blah, blah, blah…I didn’t really listen to that part.  Partially because I couldn’t hear him, and partially because he started the sentence with, “I don’t know”  When a doctor says I don’t know…well, I have a hard enough time trying to hear the things they really do know about.  I let Stuart listen to the rest.  : )    However, he doesn’t think this infection has anything to do with my on going symptoms.

I started feeling like I was going to have a full blown, down on the floor, throwing up Meniere’s attack as we got to the clinic.  I’d already taken some meds before we left the house because I was feeling it a little bit.  So I took some more.  I did not want to fall out at Duke’s Clinics.  It’s hard enough in the privacy of your own home, but I just can’t imagine the horror if I fell down in the hall there writhing on the floor throwing up.  Ugh…just the thought.  I know, I was in a medical facility, and they would try to help as much as possible, but let’s face it, I would have been mortified.  So, I took more meds, and Stuart wheeled me in to see Dr. Kaylie.  When he saw me he looked so sad.  He’s such a sweet, compassionate, and unbelievably smart doctor, I just wanted to be able to get up and say, “don’t worry I’m fine, you fixed me all up.”  Of course, I couldn’t.  But I do believe that he and Dr. Gray will do everything they can to make it better.

He was very sympathetic, but I really need to see Dr. Gray.  He is treating my ear infection, but he can’t really do anything about the pressure problems.  I have to get it tested again!

Dr. Gray also called on Tuesday.  Her scheduler called the next day and I have an appointment on October 17th, unless she has a cancellation and they can get me in there sooner.  We really can’t move forward until we know if my pressure is high, like they suspect.

My symptoms aren’t classic for having high pressure, but I do have some.  However, I also have some of the symptoms for having low pressure.  It’s almost as if my pressure keeps randomly going up and down…but that can’t be happening all by it’s self…can it?  Guess I’ll find out.

In the mean time, I’m most comfortable in bed, in a reclining position.  I’ll try to go down stairs to just move around and get a different bit of scenery, but I don’t last long.  When the tinnitus gets too loud, I can’t stand any other noise.  I’m not as comfortable on the couch, and I’m not really walking all that great on my own.  I can usually get from the bed to the bathroom, but that’s only about 4 feet, then I can hold on to the walls/sink…  (plus I do have a walker right beside my bed to help if I need it.)  If I’m downstairs I have to use my walker or Stuart to get to the bathroom.  (Not all the time, but most of the time.)

It is driving me crazy that I can’t cook.  I love to cook, and with my food intolerances, it’s hard to cook for me, and even harder to get take-out.  So we’ve been eating a lot of the same things.  Easy things that my husband can cook.  I’m very grateful, but I miss my kitchen!

Oh, Stuart has discovered the slow cooker.  He made a delicious roast this week.  I was so proud of him.  he even put in a bunch of potatoes and shallots that came from our garden!  (we didn’t get much from the garden, but the things that grow underground did great.)  Growing organic vegetables is hard!  We learned a lot of what not to do…hopefully, we’ll do better next year.  Unfortunately, we’ll be missing the fall planting season since I’m stuck.  Being home bound sucks!

I am keeping up my spirits by drawing, and reading.

I don’t think I’ve mentioned it, but Stuart’s father is getting married!  November 5th is the big day.  I’m going to have a mother-in-law…wow!  (Stuart’s mother died 3 months before we were married.)  I really, really, really want to go.  They live in Tucson, AZ.  That’s a pretty long flight from RDU (Raleigh/Durham International Airport), and there’s always a lay over somewhere.  I’m very, very lucky that I have a couple of friends who have graciously offered to stay with me if I can’t go, so Stuart will still be able to go and be his father’s best man.  As much as I want to spend time with these friends, I really hope I can go.  Not only do I want to meet my new family members  (she has 3 children and 4 grand children!).  I want to see my dear friends who live there, and my niece.  (who will have a baby brother in January).

So everyone send good healing karma, and cross your fingers I can get in for an appointment with Dr. Gray earlier than expected!  I really need her to fix me up quick, so I can make it to the wedding!  (plus, Stuart and I really need a vacation!)