Category: Meniere’s Disease

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

On By WendyIn Chronic Illness, CSF, Hip pain, Life, Meniere's Disease, Pain13 Comments

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.

On By WendyIn Chronic Illness, CSF, Medical Tests, Meniere's Disease, Pain4 Comments

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.

On By WendyIn CSF, Medical Tests, Meniere's Disease5 Comments

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…

On By WendyIn Chronic Illness, CSF, Medical Tests, Meniere's Disease, Pain6 Comments

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 By WendyIn Medical Tests, Meniere's Disease, Pain10 Comments

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.

Time to say something again…but what?

On By WendyIn Chronic Illness, CSF, Meniere's Disease, Pain6 Comments
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

On By WendyIn Chronic Illness, CSF, Medical Tests, Meniere's Disease6 Comments
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

On By WendyIn Chronic Illness, CSF, Medical Tests, Meniere's Disease, Pain3 Comments
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.

Glad I don’t own a Gun.

On By WendyIn Chronic Illness, CSF, Meniere's Disease, Pain4 Comments

Yesterday was one of those really, really bad days.

It started off fine, I went downstairs, had some breakfast, was watching some cartoons.  And the noise in my ear started, and got louder, and louder.  My head started pounding.  I went to lay down, and it just got worse and worse.  I was screaming to please make it stop, that the doctors don’t understand, that I couldn’t stand it.  I was dizzy, and felt like I was going to throw up at any moment.   I told Stuart, if this didn’t stop I would make him hate me, because I’d have to stop it.  I knew then that if I had a gun I would have blown my head off just to make it stop.  (NO, I don’t want to kill myself, but the pain and noise was so unbearable.  If you’ve never been there you just can’t imagine.)  I’ve dealt with horrible, mind splitting headaches, and I’ve dealt with the deafening tinnitus. (yes, I know that’s a strange thing to call it, but if it was coming from the outside of my head instead of inside, that’s how it would feel.)  But dealing with the two together, is just too much!

It hurts me so much to see my husband wanting desperately to do something to help, but he can’t.

I took two Vicoden (Hydrocodone), a Valium, and Phenergan.  Finally, it started to ease.  In no way did it go away, but I wasn’t writhing in pain any longer.  We propped me up on an incline to try to ease my pressure.  It seems if I’m too flat it hurts worse, if I’m up right it hurts worse, but being on an incline helps…sometimes.

I wrote an email to Dr. Gray last night.  I wanted to make sure she knows how desperate I am right now.  I sent a copy to Dr. Kaylie too.

There has to be a way to make this better.  I was so much better for so long.  I believe, I can be that way again.  But I know now, that I will never stop living in fear that it will come back.  On any given day, at any time, I could have my life fall apart…over and over again.  Dr. Kaylie calls it “Random Punishment”, you never know when it will happen, but you know it’s coming.  I’ve had it explained to me, that it’s similar to serving in a war.  You aren’t under fire all the time, but you are constantly aware that it could happen at any moment.  That does things to a person’s mind.  Talk about anxiety!

This piece is still in progress, but I felt like it was appropriate for today.

So I will have the courage to enjoy every moment I have when I’m not enduring that hell.  I will never take a day for granted.  One day at a time….just one day at a time.

It’s the Little Things.

On By WendyIn Chronic Illness, CSF, Meniere's Disease, Pain13 Comments
I created this the night after my bad attack. (W. Holcombe all rights reserved)

It’s the little things that make me happy right now.  I felt so proud of myself today.

I spent the entire day out of bed.  I even got my meals for myself…well, all except breakfast, Stuart was making that for me when I got up.

The meals I got for myself were just left overs, but I did it!

I walked by myself, and cleaned myself up…all by myself.  (yes, these are things I haven’t been able to do without help.)

I filled 5 pages in my sketch pad today.

My internal clock is still way out of whack.  I can’t seem to get to sleep before 3 or 4am. …and then don’t get up until about noon.  If I try to get up earlier so I can go to bed earlier, it just doesn’t work.  Either, I feel like crap all day, and risk having an attack because I didn’t get enough sleep.  Or, I still can’t get to sleep until the wee hours of the morning.  Ugh.  Guess I’ll talk to my doc about it next time.  I hate taking something to help me sleep, but perhaps I could take something for a little while to get my clock back on schedule.

I hope I have more days like today, and continue to feel better.  It’s been a rough road lately….but I’m making my way down it.

I feel so guilty.  I’ve told so many people about the success I was having after having my CSF leaks fixed.  I know of a few people who sought out the treatment because of me.  I’m not saying that I’ve given up, or that I think things won’t get better.  But right now I’m not sure, and I’m just afraid I made it seem too easy.  I think I’ve always let everyone know this is an experimental treatment.  However, it was working so well for me.  I was normal again.  I just want for all of us who have that feeling…being normal.   Did I give people false hope?

Even if this treatment ends up not working for me, I have always said, I hope they will learn something from this, and can help others.

Once again, I feel at a loss for the right words to express how I’m feeling.

I’m full of guilt, fear, and anger, yet…I’m still full of hope, and feel like I’ve found a part of me that has been missing for a long time.

I hope you guys understand.