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.

 

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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.

Why am I so nervous?

On Tuesday I will be receiving 6th, Lumbar Puncture.   I know it’s not a big procedure.  It doesn’t really hurt.  But I’m so scared.

After the first LP, they thought they knew what was wrong with me.  Low CSF pressure caused by spinal fluid leaks.  Simple diagnosis, treatment hasn’t been as simple…I keep getting leaks.  So now. as I mentioned before, we are facing a possible new diagnosis.  (Intercranial Hypertension with Spontaneous CSF leaks)  From what I understand, even harder to treat.  The meds that are supposed to help, well, I’ve been taking them and either the side-effects are too much, or I don’t see where they are doing anything.

A possible shunt has been mentioned.  (I don’t even want to think about that right now, but I know it’s a real possibility.)

I have such conflicting emotions right now.  I feel emotionally stronger in many ways, and in other ways, I’m scared out of my wits.

The art has been helping me so much!  There is a possibility I may have a small show in the next 6 months or so.  Something to really work towards.

I have finally come to terms with the fact that many of my friends are simply not going to be there for us.  But we have some good neighbors who proved recently that they can be relied upon.  It’s hard to explain, but I’m better about it.  Not as hurt…finding out who are really important to me.

So, back to the fear.  What am I really afraid of?  I think I’m mostly afraid of an iffy diagnosis.  One of those, “Well, we know what it’s not….”

That’s where my head is tonight.

I’ll leave you with this drawing I did the other night.  I was trying to sleep…all of sudden the idea of this came to me..I had to draw it!

Window of the phases of my life.

You can find out more about what each window pane represents on Create to Heal.

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!)

I think the Doctors are Listening

What? image by Wendy Holcombe.

thank you to everyone for the love and support you gave me after my last post.  You help me more than you can know.  It’s so good to know I’m not alone, and there are people out there who care and are sending me such good karma.

All of you would be so proud of me.  I wrote Dr. Gray an email and told her exactly how things have been going.  Really, you would be proud!  I didn’t sugar coat it at all!

She wrote me back yesterday (yes, on a Sunday), and said she was so very sorry.  She will call today, and we may have to try different treatments.  She mentioned me coming in and reducing my pressure.  She would actually take some out.  She mentioned I may need a shunt…not sure about that.  I have a friend who is getting one in November, she has high pressure and they can’t keep it regulated with medication, so they are giving her a shunt.  I don’t know enough about it to tell you, my friend has explained it, but it just sounds scary to me.  Here’s a link to an article on Wikipedia that explains it in more detail. http://en.wikipedia.org/wiki/Cerebral_shunt

Today, I’m trying the pills to lower my pressure again.  Dr. Gray sounds certain that it’s too high.  (remember, the last time I took this medication for a few days I ended up having a bad Meniere’s attack, and she thought my pressure was too low, so I was taken off the medication…it’s so confusing.)  But she sounds certain now that I don’t have low pressure.  That I’m in that rare margin of people who have high pressure that causes “blow outs” and then when she sees them they have low pressure…she patches them…and the cycle starts over.  I’m looking forward to hearing what Dr. Gray has to say.  Well, I won’t actually be hearing her, since I can’t talk on the phone, but Stuart’s pretty good at that.  I’m eager to find out how different the two myelograms were.  If most of the leaks this time were in different spots, perhaps that’s why she thinks I’m having “blow outs”.

On top of everything else, yesterday afternoon after about 2 hours have having VERY LOUD tinnitus my left ear started to hurt.  Then it started to drain a clear fluid.  I do have a tube in this ear so it’s easier for it to drain if it gets too much fluid.  It didn’t pour out, but I had to keep cotton or a tissue in it or it would run down my face.  Like it did while I was sleeping….yuk.  Today the draining has pretty much stopped, and the pain is much less, but Dr. Kaylie wants to see me tomorrow.  He thinks,  “You may have had an otitis media.  You should come in tomorrow and let me take a look at it.”  So I have an appointment with him tomorrow at 3pm.  (FYI, in case you don’t know, otitis media is a middle ear infection, I looked it up.)

I’m looking forward to hearing what Dr. Gray has to say.  Well, I won’t actually be hearing her, but Stuart’s pretty good at that.  I’m eager to find out how different the two myelograms were.  If most of the leaks this time were in different spots, perhaps that’s why she thinks I’m having “blow outs”.

I was so scared after reading Dr. Gray’s email about a possible shunt, and then having that fluid running out of my ear, I didn’t sleep at all last night.  I finally went to sleep around 8am, and got up at 11:30am.  Funny, I’m not exhausted today.  But it doesn’t take much energy to just lie in bed all day, so I’m not using up much energy.

Hope you enjoy the ear doodle.

Attack Time

On Saturday I woke up with my ears feeling very full.  (they normally feel like I have wet cotton in them, but this was worse.)

I noticed I kept having to ask my husband to repeat himself.  (even more often than usual)

These should have warned me, but I didn’t listen.  For the past few months, it hasn’t been unusual for me to have these “warning signs” with out the full fledged attack that follows.

But I was feeling pretty good!  We decided we’d make a trip to the grocery store.  I got dressed, and was sitting on the couch while we finalized our shopping list…and the world moved.  I got some Valium and Phenergan in me, but decided a trip out wasn’t the best idea.

Things settled down, and I settled in for a day of drawing and relaxing.  (forced relaxation, but relaxation all the same)  Stuart decided he’d mow the lawn.  (perhaps I should say, our mini-jungle….it’s been a while since it was mowed, and it’s rained a lot.)  He put his cell phone in his pocket on vibrate so he could feel it if I should call and need him.   I was drawing…relaxing…then I moved…I can’t remember what I was going to do, perhaps go to the bathroom, do something for the dog, get a drink?  I have no idea…but I started to feel bad…really bad.

I called Stuart’s phone…nothing.  I called again…nada.  I knew there was some medication on the bar in the kitchen, if I could just get there.  I grabbed my walker and started on my journey…of just about 8 feet around the couch and to the bar.  I didn’t make it.  But I made it to the window and Stuart saw me.  He walked in the door, and I hit the floor.  He got me some medication, but it was too late. (who knows it may not have worked this time anyway.)  I didn’t feel that bad, really.  I felt like I was having a mini-attack, but would be fine.  Until I started to get off the floor.  I couldn’t do it.  I tried to crawl to the couch.  That wasn’t happening either.  So I lay there behind the couch clutching the carpet…and I panicked.  I tried to stay calm, but the world was going crazy, and I couldn’t get off the floor.  Then the vomiting started….and a headache from hell!  Stuart said, “I’m calling an ambulance.”  I said “NO!”  (oh please, not again, a trip to the ER where they can’t do much…or don’t do much…just not again.)  Stuart was concerned my CSF pressure was dropping too low.  I told him to call Dr. Gray.

Luckily, the pain and the attack didn’t last very long.  (less than 2 hours I think)  I dozed off for a couple of hours.  When I woke up I was so tired, wanted to brush my teeth, and felt like I smelled like vomit.  We cleaned me up and put me to bed.  That’s when the terror set in.

I was absolutely petrified to go to sleep.  I didn’t feel quite right, and I didn’t want to wake up having an attack.  But it was more than that, I don’t understand it really, but I was scared.   I was also very afraid of being alone.  If Stuart moved, I panicked.  Was he leaving?  Were was he?  I was terrified, and it wasn’t rational.

Since then, my headaches have fluctuated between moderate to severe.  The day after an attack, I always have digestive issues.  I end up in the bathroom a lot.  Every time I had to go, my head would explode.

Stuart and Dr. Gray emailed back and forth, and talked on the phone.  She said to give it a few more days, but she thinks I may be a rare case.  Someone who really has high pressure, but has “blow outs” and by the time she sees them their pressure has dropped because of this.  She treats them for the low pressure, only causing more “blow outs”.  (Please note that I’m getting all of this second hand from Stuart, so I can’t explain it very well.)

I have a question for my fellow Meniere’s sufferers.  When I end up throwing up because of an attack it’s much worse than when I’ve thrown up because of other things.  (like the flu, food poisoning…or having a bit too much to drink..)  It’s violent.  I gag so much, I can’t breathe, it’s so scary.  My stomach hurts so much, and I constantly feel like I have to go to the bathroom too.  This time I had such violent spasms that my jaw popped.  It was so painful, my mouth was trying to open further than it should.

So my question is:  Does anyone else feel that when you get to the throw up stage during an attack that it’s worse than other times you’ve had to throw up?

I swear it’s so horrible I would do anything to stop it.  All I want to do is die during these attacks….just make it stop.

Why can’t they fix us?  Why can’t they at least figure out how to control the symptoms?  I know my doctors are working on it…but I’m having a hard time just watching life pass me by while I wait for someone to help me.

Don’t get me wrong.  I’m very grateful that I had nearly 5 months of being virtually symptom free.  This is the first severe attack I’ve had since January!  I’m very happy about that, and it does give me hope.

I am also so very grateful that I have the support of my husband.  I have such respect for those of you who have to endure this without help.  I had Meniere’s before I met Stuart, but it’s gotten much worse in the past few years.  I have been through attacks alone.  It was terrifying…and at the time I didn’t know what it was.

Stuart really helped during this attack simply by talking to me the whole time.  Telling me how much he loves me.  Repeating soothing words over and over.  I honestly think this attack would have lasted longer if he hadn’t been there to help calm me down…and take care of me.

 

Hearing Tests and finding me again.

I thought some of you might be interested to see the results of my past two hearing tests.

There’s a lot of information there.  The biggest thing that makes it hard, is the word recognition.  They simply can’t fix that with the hearing aids.  So, according to the latest test, I’m recognizing about 84% of the words I’m hearing in my right ear…and that’s if they are at the right frequency.  I’m not deaf!  Some things are difficult, but hopefully this is temporary, and if not…I’ll learn.

We still have much hope that things will change.  My doctors believe the hearing in my left ear will get better.  We’ll just wait and see.

I know many of you are concerned for me right now.  I’m doing OK.  Really.  It’ll  take time to process everything  Yes, my life’s plan will need to change.   I’m trying to look at things differently, not looking back and thinking of what I’ll miss, but look forward at what I can accomplish.

Last night I was writing and drawing and thought I’d share something I wrote:

Journal Entry Sept. 8, 2011

What started me on this journey?

The need to write and draw is now overwhelming to me.

How did I ever give this up?  How did I lose so much of ME?

***Hey You!***

Yes, You – That girl you look at in the mirror every day —

Welcome Back!

p/s  Please don’t leave again.  I’ve missed you.

Thank you all for so much for all the support.  Yes, I’m going through a rough spot…but with the support I get from you…my dear friends…it’s easier.

I never dreamed I’d feel such an out pouring of support from people I’ve never met in real life.  Many of you have reached out to me when I’ve needed it most.  I only hope in some small way, I can give to you as you have given to me.  thank you.

“We Have to Wait and See if…”

I started writing this post a few different times, but nothing I say seems to come out right.

I don’t want to sound all pessimistic.  I’m not…I’m hopeful…but I’m tired….and a bit frustrated.

I saw the audiologist, had a hearing test, and saw my Oto. , Dr. Kaylie, on Tuesday.  (August 6th)  It was a very emotional day, and I feel like all the answers I have are still…wait and see….

My hearing test was dismal.  My right ear is pretty steady, my left ear is now pretty useless.  Yes, even with the hearing aid.  It is hoped that it will come back, but it’s a wait and see kind of thing.  I scored 0% on the word recognition in my left ear.  This was my “good” ear before.  Now the volume is down like the right ear, but the sounds are so distorted I can’t understand them.  It’s heartbreaking really.

Finally, I asked Dr. Kaylie, “do you have any idea if I will continue to have relapses?”  He said no, “We’re in uncharted territory here.”  I was pretty sure that’s what he’d say.  But it still stung.

I explained that we were in the process of getting licensed to become foster parents, but without knowing, I just don’t see how we can.  Dr. Kaylie, looked very sympathetic, but he couldn’t say much.  He did say, since things improved so much before, he believes it will again.  That my pressure hasn’t stabilized yet.  He has every hope that my hearing will improve.   (for some reason, I’m not as hopeful.  I guess I’ve heard it before, with my right ear, and it didn’t get better, but at least it is stable now.)

If I take out my hearing aids, I can’t hear anything but very loud noises.  I can not make out speech.  Just a few months ago, I could still hear, and understand most words.  If I wear the left hearing aid, it’s just so I’ll have the volume control to work.  (button on right hearing aid is up, left is down)  There’s really no reason to wear it.  So did I waste $2000?  maybe…We have to wait and see if my hearing improves….

Will I be able to drive again?..We’ll have to wait and see if the disequilibrium gets better….

Headaches?….we’ll have to wait and see when your pressure levels out.

So I’m in waiting mode…..and I don’t like it!

I will post my hearing test for you to see soon.  (right now I can’t get it to come up on my computer…..I do have a love/hate relationship with technology.)  I will post the test from earlier this year, and the one from Tuesday.  You can see how much things have changed.

I posted a photo I created on my Create To Heal Blog, that I’d like to share here too.

Fractured Ear (Hearing)                                                                              by W. Holcombe all rights reserved.

During my hearing test I started to cry…just a little…I could tell things were very bad.  Then the audiologist tried to adjust my hearing aid to help…it didn’t work.  I held it together.  Until I got to the waiting room and saw Stuart, then I broke down.

I have to admit, I’m scared now.  More scared than I think I’ve been in a very long time.  If the hearing doesn’t change in my left ear, and if my right ear’s hearing diminishes…I won’t be able to hear.  It’s already so hard, just hearing parts of things.  Missing so much.  Dr. Kaylie says I’ll never be deaf, that he would give me a cochlear implant.  But, I’m scared.

And, now once again, I have to change my plans for my future.  I have to come to terms with the knowledge that, I will never be called Mom.  This is something that’s going to take me a bit more time to process.

So….We’ll Wait and See.

Please take the time to check out Kelly’s series on Fly with Hope this week.  Today, (August 8th) is my story.  “I want to live! But I don’t feel like I am!”

 

Also, take a minute to drop by Phylor’s blog and check out the playlist from other chronic bloggers.  A lot of great music, and a lot of inspiration!

And as always.  Thank you so much for all the support you give me!

 

Cerebrospinal Fluid Patches with Tisseel – A Photo Journey

This is a photo post of the procedure I had done on Aug. 22, 2011.

If things like this my disturb you, or if you have an aversion to needles, please do not look.

I’m publishing this, solely for those who have a curiosity about this procedure, and for my own prosperity.

I apologize I do not have any photos of the Lumbar Puncture, or the Myelogram.  I didn’t think to ask my husband to start taking pictures until we were at this stage.

1 - Marked Areas where Needles are to Enter.
2 - Apply Pressure (the CT scan lines up where to enter, and they take pictures the entire time they are working on each spot)
3 - Lidocaine
4 - Needle Remains
5 - CT scan of previous image. upper right - can see needle in inside.
6- Needle remains after first adjustment.
7- upper left - where needle was upper right - where needle is after last adjustment.
8- More adjustment
9 - upper right, where needle is after last adjustment.
10 - Final Adjustment
11 - add contrast dye.
12 - can see contrast on image
13 - adding Tisseel. (a Fibrin Sealant)
14 - Tisseel being added. Can see pushing the contrast deeper. They put contrast in so they can see where the Tisseel is going.

 

This series is patching one leak.  This had to be repeated for each of the 7 leaks they patched.

Please remember I’m on my face the entire time.  I did not see this procedure until I was able to see the photographs.  We are relying solely on my husband’s memory for the descriptions.  Please forgive us if something is slightly off.

Also, these photos were taken with his phone, so please forgive the quality.

(He was a bit more concerned about what was going on with me, instead of taking notes on the procedure.  I keep telling him, that he can do both…but somehow, he just doesn’t believe me.)

I hope you enjoyed your little snippet of my day at Duke Medical.

Thank you to Dr. Linda Gray Leithe and her wonderful team for allowing us to take photos, and for taking such wonderful care of me.