Another Lumbar Puncture..Myelogram…CSF Patches??

Dr. Kaylie and Dr. Gray agree I should have another lumbar puncture, and if my pressure is low, I will have another myelogram and patches the same day.  Next, Thursday we’ll find out my symptoms either have nothing to do with Cerebrospinal Fluid, or I’ll be getting more patches.  Can you guess which answer I’m hoping for?

At first I was very concerned, why would I be getting new leaks?  What would this mean for the future?  Will I have to do this over and over and over again?

Then Stuart said something that made so much sense, I thought, “Why didn’t I think of that?”

photo courtesy of http://www.superstock.co.uk

Imagine you have a water hose, and it has a few leaks in it.  You patch all of the leaks but one, at first that one leak doesn’t seem to get any bigger, but after the pressure builds in the hose the leak gets bigger.  Or there may be other weak places in the hose, and since the other leaks have been patched and aren’t there to release the pressure, they start to leak.

Doesn’t that sound obvious?  He’s so smart!  And made me feel much better.  Surely, there will be a finite number of weak spots, and this will happen a finite number of times!

I’m a little nervous about going through this again.  No, the procedure really isn’t that big of a deal.  The worst part is getting the IV before the procedure.  As the phlebotomists say, “I’m a difficult stick.”  I have very small veins that like to roll away from the needle.  To make it worse, they keep it cold in there, and that just makes my veins shrink up.  It usually take them a number of tries before they can get the IV in.

Kind of ironic huh?  I’m going in for a Lumbar Puncture, possible myelogram, and CSF patches; and I’m more concerned about getting the IV than anything else.  Guess I trust my doctor, more than the phlebotomist.  hummm.

 

Being a better Advocate – updated

little butterfly on my Echinacea plant

I’ve always said that we must be our own best advocates.

We need to find out as much as we can out our illnesses, and make sure the doctors we choose are up to date, and caring.  For me, I like doctors who will think outside the box.  Who try empirical evidence, instead of thinking the normal is normal for everyone.

It’s also very important to make sure your doctors understand what is going on with you.  That has been a hard thing for me lately.

I didn’t want to admit that I’m not doing well.  I have been so happy with the results of the CSF patches, that I didn’t want to think that I might be taking a step backwards.  I’ve been keeping my doctor advised of my situation, but I have been downplaying it.  Stuart says I haven’t even been honest with myself.  I haven’t admitted that Meniere’s has been ruling my life again.   No, I haven’t been having full-blown attacks, but I’ve been feeling so bad that I spend most of my time lying down or sleeping.  I got the Wii Game Just Dance this week.  It’s so much fun, but every time I try to do it, I end up having mini spins and spending hours just wanting the world to be still.

So today I sent Dr. Kaylie an email, and told him just how much this has been affecting my life.

I realized that I have not been taking my own advice.  I have not been a good advocate for myself!  That is going to stop.

If I don’t hear from Dr. Kaylie by tomorrow I will have Stuart call his office.  (Yes, Stuart.  Another way this is affecting me?  I can’t really hear on the phone very well.)  I’ve also decided I don’t feel comfortable driving.  Feeling a bit drunk all the time, is not the way you should feel when you are driving.

I feel much more empowered now.  Just speaking up, and telling my doctor that I’m disturbed by what is going on, made me feel like I was doing something productive.

**update** Dr. Kaylie emailed me back, and a copy was sent to Dr. Gray (Linda).  He said, “It might be a good idea to get another myelogram.  What do you think Linda?”

I’ll keep you posted on the outcome.

I hoped I’d never say this again…

my hearing in my left ear has been down dramatically for 4-5 days.  Today, I spent the majority of the day too dizzy to do anything.

Showing how I felt. Artwork by Wendy.

No, I didn’t have full-fledged vertigo, but I came close.  I slept late today, I’ve been doing that a lot lately.  (I don’t feel like I’ve been sleeping very well since my shoulder has been bothering me so much.)  I wake up and just don’t feel that I have the energy to get out of bed, I either just fall back asleep, or get up and soon end up back in bed to sleep a little longer.  Today I got up around 10:30am, ate some breakfast, and started feeling worse and worse.  I staggered back to bed, took some medication, and hoped it would go away.

For the first time since I had the patches in January, I closed my eyes and could see the shadows behind my eyelids slowly rotating.  I was so very tired, and just wanted to sleep, but I couldn’t, because every time I closed my eyes it felt like things were moving.

Finally, around 4pm, I started to feel mostly normal again.

I feel so….oh, I don’t even know what my feelings are right now.  Scared and worried, yet confident that the symptoms can be controlled again.  Perhaps, I have another leak.  Perhaps, they need to patch the last leak.  Perhaps, a patch didn’t hold.  And in the back of my mind I hear, “Yeah, and perhaps you had a 3.5 month reprieve and your are just S.O.L. now.”  As I told a friend of mine today, I feel I need to hope for the best, but expect the worst.  If things turn out well, then that’s a happy time, if not, then I won’t be devastated.

I already feel like this darn disease is controlling my life again.  We were supposed to have a CPR class tonight, and we had to cancel, because of me.  There’s so much I’d like to get done on the house, but that will have to wait.  However, Stuart has done a lot.  We still have a home visit on Thursday, but who knows when we might be able to take a CPR class again.  I’m just so afraid, everything is going to fall apart.  But I must say, if things are going to fall apart, I’d rather it happen now.  I’d hate to have a child and decide we can’t take care of him or her because I’m too sick.  These children have undergone enough losses, they don’t need to get in a home and then lose it too.

I’m going to see Dr. Kaylie, my Oto., tomorrow at 4pm.  We have a call in to Dr. Gray.  She may want to do another lumbar puncture.  Who knows.

I know, I’m jumping the gun.  Dr. Kaylie may look in my left ear and tell me that the infection hasn’t cleared up and that’s what is causing my problems.

All I know is that the last few days have felt just like it does when I’m in acute mode with the Meniere’s.  Things aren’t happy, and I could have an attack at any moment.   There is no doubt in my mind that if I hadn’t taken the Valium and Phenergan when I did, that I would have ended up with a full-blown vertigo attack.

I’ll let you know what the doctor says.

Treatments for Meniere’s Part 4 – CSF adjustment

If you’ve been following my blog you probably already know much of what I’m going to say here.  If you haven’t been following my blog, you can read even more about my experience with this treatment over the last few months.

In November of 2009, I started seeing Dr. Kaylie at Duke University Hospital’s Vestibular Clinic.  “Physicians at the clinic conduct clinical research to learn more about vestibular function in people who suffer from balance disorders such as Ménière’s disease, migraine-associated vertigo, and viral inner ear diseases. Several studies are ongoing that will provide insight to help improve therapies.”  They are also “conducting research into chronic, disabling disequilibrium after Ramsay-Hunt syndrome and Ménière’s disease.”

In October of 2010, I went to see Dr. Kaylie about possibly getting the Endolymphatic Surgery in my left ear to try to control the vertigo I was experiencing.  At this time he asked me if I’d rather have the surgery, or try to find the cause of my Ménière’s.  Of course, I chose to try to find a cause.

Dr. David Kaylie and another doctor at Duke, Dr. Linda Gray Leithe, are doing research trying to find a cause of Ménière’s.  Dr. Gray is a neuro-radiologist, she is researching how increased or decreased spinal fluid pressure can cause different disorders, including Ménière’s Disease.

On November 3, 2010 Dr. Gray performed a lumbar puncture on me.  Before the procedure she told me that the normal rage for Cerebrospinal Fluid (CSF) Pressure was between 10 and 20.  I measured exactly in the middle, 15.  However, Dr. Gray doesn’t think that everyone should have the same “normal” baseline.  She does empirical testing to find out if her patient may indeed have low or high pressure even though they have “normal” readings.  First she added some artificial CSF and all of a sudden I was able to hear her talking behind me, when I couldn’t just seconds before.  My dizziness disappeared, and I felt great.  I was so excited.  (If this hadn’t worked she would have given me a medication to lower my pressure to see if it helped, but this wasn’t necessary.)

That night, I had a horrible vertigo attack.  It lasted for hours.  After talking with Dr. Gray she felt that the fluid she had added was leaking out and that caused me to have the attack.

Photo taken my the Blood Patches.

On November 24th, she did another lumbar puncture, I was at 17.5.  She then performed a Myelogram.  During the myelogram Dr. Gray inserted a contrast dye in my spine, I then had to roll over and over and lift my butt in the air…to make sure the contrast dye was distributed evenly.  I was then given a CT scan that showed I had 6 leaks.  She then patched 4 of leaks that they found.  She didn’t patch them all because it could have caused my pressure to get too high.  She used my own blood to patch the leaks.  Immediately after the patches I could shake my head and not get dizzy.  I felt so much better…I felt normal.   (to see more photos and read more about this procedure see my post from Nov. 27, 2010)

Unfortunately, just 10 days after the blood patches, I started to have symptoms again.  Dr. Gray wasn’t sure if I had low pressure again or if I was starting to have high pressure.  So I took some of the medication that lowers your pressure.  I didn’t feel better, if anything I felt worse.  It took much longer to schedule my next lumbar puncture and patches because of the Holidays.  I had a very hard time during this wait.  I felt I had been abandoned.  The depression that consumed me was horrible.  Finally, I started to take the advice of my therapist and other Ménière’s friends, I decided to accept my disease.  I believe the Ménière’s will always be with me.  I don’t think I’ll ever be happy with this disease, but I accept that it is a part of me.  Even when I’m feeling good, I know it may come back.  This has really helped me to overcome my depression.

On January 28th 2011, Dr. Gray did another lumbar puncture and patched my leaks with something called Tisseel, a tissue glue.  Since she didn’t use the blood patches I didn’t have any extra fluid added during this patch.  It took me about 2 weeks to start feeling a lot better.  (To read more about this procedure please see my post from Jan. 28, 2011.)

I am now feeling so much better!  NO vertigo!  My hearing in my left ear is staying up and stable, my right ear’s hearing didn’t come back, and I still have tinnitus.  They think my right ear was probably just too damaged after having so many attacks.  I can deal with the symptoms I have left.  I’m leading a much more “normal” life.

Since the hearing in my right ear has stabilized, next week I will be evaluated for hearing aids.  I’ll let you know how that goes.

I’ve been asked a few questions about this procedure, I thought I’d try to answer some of them here.

  1. What caused the leaks? I don’t know.  It could have been caused by an accident, or it could be simply genetics.  Unless CSF leaks are found right after an accident, they rarely figure out what causes them.  It’s funny, until someone asked me, I didn’t even think to ask.  I was just so happy they found something tangible that could be causing my symptoms.
  2. Do my doctors think this could have been the cause of the Unilateral Ménière’s or was it something that happened later on? It’s my understanding that they are thinking this would have been the cause all along.  I know they are not just testing this on bilateral patients but also on unilateral Ménière’s patients as well.  Only one person they tested ended up not being helped by this at all.
  3. What’s next? Well, I have the evaluation to possibly get hearing aids next week.  But I don’t see Dr. Kaylie again for 6 months.  Unless something happens, then I’ll see him and/or Dr. Gray before then.  However, they feel that they know what is causing my symptoms now, and if I have a relapse they know what to do to fix it.  (Yes, I could get another leak at some point in the future.)
  4. What about people who have high pressure how do they treat them? I’ve met another of Dr. Kaylie and Dr. Gray’s patients.  She has Ramsey Hunt Syndrome and was the first person brought into this research.  She wasn’t responding to normal treatments, so they decided to try this.  She has high pressure.  She was put on medication to lower her pressure.  It worked for a few months, but it hasn’t been able to control her symptoms.  Recently, Dr. Gray gave her another lumbar puncture and lowered her pressure.  She is now on more medication.  However, she may have to have a little tube (called a shunt) put in so she can drain the excess fluid when necessary.  They only do this if a patient’s pressure is very high and they can’t control it.
  5. How can I find out more information about this procedure? Feel free to ask me anything about my experience.  Also,  Dr. Kaylie and Dr. Gray, don’t mind answering questions.  Just click on their names and it will take you to their pages on the Duke site, where you can get information to get in touch with them.  If you need to email them, just write to me and ask me their email addresses.

I’m sure I’m forgetting something, so if you have any questions, please feel free to ask.

Up Next:  Treatments for Ménière’s – Angelea’s Story

As always remember that different treatments work for different people.  I am not a doctor and I’m not suggesting to anyone that they should try this or any other treatment I’ve tried.  This series is only meant to allow people with Meniere’s to see how others have dealt with this disease.

Feeling Better and Worse

The Dance, by Wendy Holcombe

Great News, the Meniere’s is still staying calm!  Virtually no symptoms!  Yes, I feel like Dancing!!  Since I’ve been feeling better I’ve been doing much more.  On Saturday we went to the new outlet mall that recently opened not too far from us.  Actually, it was farther than I thought, but we made it.  After that long ride, we walked around for a long time.  Then we left there, got some lunch, and went to the grocery store.  Next, we stopped at the library to pick up a few books I had on hold.  Finally, we headed home.  I went upstairs to get in more comfy clothes, and saw a print out for an exercise routine that I got off of Faith, Hope, and Fighting Spirit’s Blog. I decided, to try it out.  Whew! for someone who hasn’t been exercising, it was intense.  Really, it wasn’t so bad, but it calls for many push-ups and I’m really not good at doing push-ups.  I am very proud that I got through the whole Total Core Pyramid, and I only skipped a few push-ups.  I rested for a while, then made dinner and a friend came over and we watched movies.

What a busy day!

After all of that my hip was hurting so much!  It popped and everyone heard it!  Ouch!  I guess I haven’t been having hip troubles, simply because I haven’t been doing much.  When I went to bed my shoulder was hurting so bad after all those push-ups I couldn’t get comfortable.  I finally decided to take a pain pill, and it helped.  (I took a total of 3 hydrocodone yesterday.  The first because I had a headache, the second because of my hip, and the third because of my shoulder.)  I don’t think it’s a good thing that I have to take pain pills to get through an active day.

I don’t want to have surgery on my hip again, so I’m going to try to build it up with light exercise, working out in the pool, and having massages.  I’m hoping to be able to start going to the pool next week.

My husband is starting a new job on March 16th.  He will be working as a contract employee for the first 3 months, then he will be full-time.  It’s an exciting and nervous time.  This is a much more stable company, and it has better insurance.  Of course he won’t have this insurance for the 3 months he is a contract employee, and for the first 30 days after he is full-time, but we will still be on his old company’s insurance, we just have to pay for it.  He will still be able to work at home, with great flex time.   I just hope he will end up loving what he’s doing!  It’s very hard to have a job that you hate, no matter how good the benefits.

To Sum Up:

  • Meniere’s is doing great.
  • I’m being much more active.
  • Hip is not doing so great.
  • Hubby has a new job.

Oh, by the way, I’m looking forward to my appointment with Dr. Kaylie on the 14th.  I’ll  be getting a hearing test and we’ll find out just how much better I really am.

No New Punctures for Now

image found at http://coffee-shop-dharma.blogspot.com

I just got off the phone with Dr. Gray.  I told her how much better I’m feeling, and she said she didn’t want to even test my pressure if I’m feeling this good.  She doesn’t want to mess around with things.

She is very hopeful that I will continue to feel better.  (me too!)

I am wondering if the reason I’m feeling so much better is because I stopped taking Topamax.  It can lower your pressure, so it could have been causing my pressure to be too low.  Or it could also be because I started taking B12 shots.  Tomorrow will be week 3, so I should really be starting to feel a difference there.  I have much more energy, and I just feel better.  Perhaps a combination of the two has really made the difference.  I don’t know, but I’m just grateful to be feeling so very much better!

What a difference from just a couple of months ago, huh?

Oh, I am talking on the phone again!  I had 3 conversations on the phone today and I was able to hear the people, and I didn’t get nauseous.  (often when I tried to talk on the phone before, even when I could hear, it made me so dizzy I would get sick to my stomach)

A Different Thursday

Today I don’t have anything particular to write about.

Health wise things are about the same.  I’m feeling a bit better.  Hearing has improved, but still not up to its normal standards, and I’m still nursing a headache.  However, the weather has been crazy here.  Warm one moment, cold the next, and now it’s raining.  So all in all things are pretty good there right now.  Just waiting on the next visit to see Dr. Gray on the 2nd.

Every year about this time our master bathroom gets invaded with lady bugs.  I’m not sure how they get in there, the window doesn’t open, I think they just came with the house.  : )

Lady Bugs in my Bathroom

Yesterday I took a picture of myself.  Don’t know why, I just felt kind of pretty.

That's me!

Today I had a first: I was served with a Subpoena.   Of course I’ve seen people get served on TV many times, but I got mine in the mail.  How weird is that?  It is such a strange feeling to see on a piece of paper that I am COMMANDED to appear and testify in court the week of March 28th.  I have to testify against Paul Seelig, former owner of Great Specialty Products.  He was selling bread as Gluten-Free bread and it wasn’t.  I was one of the people who bought some and got sick.  It’s a much longer story than this, and I may tell more later, but for now you can read the initial news report about it here: http://www.wral.com/news/local/story/6949028/ if you would like.

I won’t bore you with the details of how involved I got in this case.  But I feel so betrayed, and hurt.  I believed this man, and he could have killed people.  I got sick and convinced myself that I must have gotten gluten somewhere else.  I feel like I am such a bad judge of character now.

The First Signs of Spring

I went to the library today and there were daffodils blooming in front of the building.  Oh, I love the first signs of spring.  On Monday it was so nice I sat outside for a while and just soaked up the sun.  It was so beautiful.  I know we will still have some cold days, but the warm days are peaking through, and that is making me happy.  Time to start planning our garden!

I’m sorry I haven’t posted in so long.  My stupid headache lasted for days.  I literally slept for nearly 2 straight days trying to get rid of it.  I’d wake up and would still be in so much pain, I’d just take more meds and go back to sleep.  It has been much better, but I still feel like I have a nagging headache, just not one that will knock me on my butt!

On Monday, I had a good day.  I actually cleaned the kitchen, and vacuumed the kitchen/breakfast nook and living room.  It looks so much better.  Our new vacuum is so powerful, it needs a different attachment on it for the carpet, it is so powerful the suction makes it hard to get it to move along the carpet.  But, boy you really should have seen how much dirt it picked up.  I never would have guessed there was that much in there.  (Or maybe you shouldn’t see it…now should I be ashamed?  Or delighted that I was actually able to finally get it up?  I think I’ll be delighted!)  And today I’m working on the laundry.  I really hate doing laundry, but I’m so happy I am just able to do it.

I even made candy on Monday!  I was going to take a picture, but I put it in the refrigerator, and it turned a funny color, so I didn’t think it was photo worthy.  However, my husband was thrilled.  I made mint chocolate Lego Blocks for him…he is a huge Lego fan, and loves mint chocolate…no silly hearts for him on Valentine’s Day.  : )

We even made it out to dinner.  I had planned to cook, but we hadn’t made it to the grocery store, so out to dinner it was.  We got there early, so no waiting.  Then we spent the evening grocery shopping.  How romantic, right?  We did come home and have a nice quiet evening together and it was very nice.

So, how am I doing physically?

Better.  But the headaches aren’t good.  However, I think they are mostly hormonal.  I’ve been having a very light period, but it’s the first one I’ve had in months.  Also, I’m trying to go off of birth control pills.  (no I’m not trying to get pregnant, I just want my hormones to be my hormones and see where I’m at with all of that.)

I still start feeling worse in the evenings.  Dr. Gray is talking about testing my pressure to see where I’m at, I think that’s probably a good idea.

I did see my regular MD this past week.  (did I mention that before?  I should probably re-read my last post, I was in so much pain when I wrote it I really don’t remember much about it.)  Well, if I haven’t mentioned it we found out that I have a B-12 deficiency again.  I was getting shots last year, then I went to oral supplements.  It looks like I don’t absorb the oral supplements or B-12 in my diet very well.   A lot of people with celiac disease don’t.  So some of my icky feeling symptoms could very easily be caused by that.  My thyroid was also a bit low, so there we go with more of the same symptoms.  Fatigue, dizziness, GI symptoms…  It’s hard to know what is causing what.

My nutritionist started me on a diet to help regulate my blood sugar.  It is mainly just meat and veggies with very little fruit.  I am to make sure I have protein and fat every 2-3 hours.  I’m also to drink lots of broth.  I’ve been drinking the broth for a few weeks now, and it really seems to be helping my digestion.  I’ve actually had come normal bathroom habits.  I still have some diarrhea, but it is less that it was, anything that isn’t diarrhea is less that it was.  (I know icky subject.)  If I could just start losing some of this weight I would be a very happy girl.

The last couple of nights I’ve had a hard time sleeping.  I’ve read 3 books this week.  One was pretty short, but still, that is just insane considering I don’t read in the day time.  You can really tell when I have insomnia, I go through books like crazy!  I read Counterfeit Magic by Kelly Armstong, Three Bedrooms, One Corpse by Charlaine Harris and Ghost Town by Rachel Caine.  All of these books are parts of series.  Sometimes it drives me crazy that I get all caught up in a series, other times I can’t wait for the next one to come out.  I was disappointed in the first book.  The second book is a mystery, this poor girl one of those people who always seem to have people murdered around her, but it was cute.  The last book, was really good.  I was impressed that this author was able to come up with such a unique story on book 9 of this series, I felt like it was getting a bit same old same old with the last book, but this one really switched it up.

Well, that’s all for today.  I hope you are all getting your first days of spring and are enjoying them as much as I am!

Oh My Aching Head!

Oh My Aching Head!

I got my first headache since the patches yesterday.  It was a pretty bad one, but when I took some meds and a short nap, it went away.

Last night when I was trying to go to sleep I was all stuffy.  I think I’m having allergies.  I woke up this morning around 8am with a horrible headache, I went back to sleep for a little while (read 2 hours on and off here) and when I decided I would just get up I swear my head hurt even worse.

Today it’s on the left side of my head.  I feel like there has been a rod inserted in my left eye and it’s coming out the lower part of the back of my skull, and it’s rotating.  At first I didn’t take anything, I thought I’d eat something and drink a bunch of water first to see if that would help. Nope.  Then I took a Topamax, to see if I have high pressure.  Nothing.  Then I took a Maxalt (migraine reliever). Nada.  Finally, I took a Hydrocodone. I can’t really open my left eye now, and I’m sick to my stomach.  I just took a Phenergan to see if it will help with the nausea.

So what is causing this horrible headache?  Allergies?  Hormones? (I’m on my period.) or is my pressure going too high?

I just really wish it would go away!  I really need to do some house work, I can’t tell you the last time my house was vacuumed….maybe Christmas?  No wonder my allergies are bad.  : )  I got a new vacuum for Christmas, anyone want to come try it out?

Feeling Better

 

Happy as a Monkey (I did this painting for a friend's nursery.)

It’s been 12 days since the Cerebral Spinal Fluid Patches, and I am feeling better.

 

I still feel better in the mornings, and then fade in the afternoon.  By the evening I often just feel a bit icky.  Kind of off kilter.  (you know, a little off-balance, not much, a little nauseous…)  However, over all, I do feel much better as far as the Meniere’s is concerned.  Not so much with my GI stuff, and my hip pain, but that is a story for another day.

Stuart talked to Dr. Gray a couple of days ago and he told her how I felt so much better in the mornings, then as the day goes on I start to feel worse again.  She said that is a sign of low pressure.  She suggested I come in and have her patch the last leak.  They didn’t patch them all because they were afraid they would spike my pressure, and/or cause it to raise and stay too high.  We decided to wait a few more days to see how I’m doing.  I’m thinking I should probably stop taking Topamax all together (after discussing it with Dr. Gray) before I go in to have the last patch.  Topamax is used to help control migraines, and it also treats bi-polar disorder, however, it can also be used to lower your spinal fluid pressure.  Since I’m taking a small dose every day, I think it’d probably be a good idea to get off of it if I already have low pressure.   : )  Then we will see if I still need to go in for the last patch.

How much better do I feel?

  • I haven’t taken any Valium or Phenergan in days.
  • The dizziness and feeling of being off-balance (disequilibrium) is minimized.  In the mornings I don’t feel it at all.
  • No headaches.  (well, I had a little one today, but I think it’s because I didn’t sleep well last night.  No migraines though!!)
  • Hearing is staying pretty steady in my left ear, I can hear pretty good out of it, but some frequencies are dull.  My right ear is still pretty gone, but in the evenings the tinnitus is much worse in that ear.

So what do you think?  Sounding good so far?

I learned from my last experience with the blood patch that I don’t want to jump the gun and think I’m ok before I have a long while feeling that way.  I’ve been conversing with another patient of Dr. Kaylie and Dr. Gray.  She has high pressure (and she doesn’t have Meniere’s she has another vestibular disorder).  She felt “normal” for over 2 months then the meds stopped working and her symptoms started to return.  It was so hard for me after just 10 days of feeling normal to go back to having the symptoms again, I can’t imagine how she must have felt after 2 months!  She is still being treated, and there is hope she will get back to that “normal” state too.  Just as we are hoping I will.

This time I’m looking at things differently.  Before, I looked at this as a possible cure.  I don’t know if I want to think of it that way.  That would mean that it couldn’t come back, and we have seen that it can.  I have finally come to accept this disease as a part of me, that I have to live with for the rest of my life.  I will always look for the best way to deal with it, and right now I think this treatment is it, for me.  However, I know that the Meniere’s is still there.  If something gets off-balance again, it will all come back.  One of my lovely readers advised me to not fight it so hard, but walk with this disease and accept it.  I’ve taken her advice.  It will never be my friend, but it will always be a part of me, and I can deal with that (at least I’m learning to).  It has made things much easier since I started thinking this way.

Another thing I’ve been thinking about a lot lately.   Friends.   I feel like I’ve lost touch with so many of my friends since I started getting really sick.  (I say really sick, because I’ve been sick for a long time, but I was functional.  This past 2 years have been much harder.)  I was taking that very hard.  But I really needed to look at it and realize, that most of it had nothing to do with me.  Most of my friends also had children over the past 2 years.  I can’t drive, and their lives are so busy with their new families they just don’t have the time to make for me.  And that’s ok.  I’m still here.  You know, even if it is because they don’t want to be around a sick person, that’s ok too.  I’m not going to take it personally.

I decided I’ve had some really great friends in my past, and I love them and want the best for them.  We may not be in touch as much right now, that’s ok.  We may be more in touch in the future and that would be great, if not, then it wasn’t meant to be.  I will still love and cherish the time we spent together.  I know there will be new people in my life, and in theirs.  We grow, sometimes we grow apart, sometimes we grow together.   Sometimes we simply grow up.  I think I’m doing a lot of that right now.  (at 47, you would think I was all grown up….but I’m learning new things all the time, especially about myself.  And heck, I don’t think I’ll ever see myself as a “grown-up”. *shudder*)