Month: February 2011

Feeling Better

On By WendyIn Medical Tests, Meniere's Disease6 Comments

 

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*)

8 Days after…still waiting…

On By WendyIn Medical Tests, Meniere's Disease3 Comments
image courtesy of http://www.artbywicks.com

I know I haven’t been posting as much as I usually do, and I haven’t been talking about my progress after my Cerebral Spinal Fluid patches, but I just haven’t felt all that different.

I wake up in the morning, and most mornings I feel pretty good.  (that’s not unusual)  I continue to feel a bit off balanced all the time.  As the day goes on I seem to start feeling a bit worse.  I don’t really know how to explain it.  It’s kind of like I’ve always felt, but different.  My head feels full, and I feel like if I moved my head too much I’d barf.  I feel slightly nauseous most of the time.  If I get hot, it gets so much worse.  I’m just not sure what it all means.  Stuart tells Dr. Gray and she seems content.  She says it’s good that I’m not having headaches.  I’m happy about that too.   I sure do wish I would see more improvement.

I do feel like my hearing is a bit better in my left ear, but I still have trouble hearing certain frequencies.  I don’t realize just how much I rely on closed captioning until I don’t have it.

So, my progress so far…not too much.  But I haven’t had any full blown Vertigo attacks!!  That says a lot.  One time I felt like I might start having one, I took a pill to reduce my pressure (like Dr. Gray advised) I was still having symptoms 30 mins later, so I took another one…and shortly afterward I couldn’t stand it any longer and took a Valium and Phenergan.  I started feeling better, but I’m not sure what caused it.

I had a Gastrointestinal CT scan on Thursday.  It was not a fun experience, but it wasn’t the worst I’ve had.  I think I had a reaction to the Contrast they had me drink before the scan.  I had horrible diarrhea starting before I started the 3rd cup.  (you have to drink 3 cups of this stuff, they tell you that, but they don’t tell you the cups are 20 oz.).  Well, they almost had a mess to clean off of their expensive machine.

The other bad thing about the test.  They were also supposed to put in an intravenous dye.  I told the nurse on the phone the day before that it is very hard to find my veins.   So she took me back in the very cold CT room and tried to start and IV, she looked at my arms and said, “Oh, yeah, you told me this would be a challenge.”  I said, “Yeah, I don’t know why people never seem to take me seriously.”  She said she did, she just forgot.  She then said she could see any veins, and she couldn’t even feel anything.  I said, well, it’s very cold in here, they had to use a hot pack last week to help out.  Well they didn’t have that.

So after 5 times of her trying to find a vein, and each time she would say something like, “I don’t feel confident about this, but I’m going to try.”  I felt that was not the thing to say to a patient.  She was very concerned for my comfort, but she was not confident in her job.  One time when she said that and was about to stick me (try number 4 I believe) I turned to her and said, “Honey, You need to get some confidence, you have to believe you are going to do this or you will never be able to do it.  Take control, tell that vein who is boss!  And just do it!  Don’t worry so much about hurting me, I’ve had much worse.”  She just said, “You are so funny.”

OK, well, I do believe, if you believe you are going to fail, you will fail.  It was obvious she believed she was not going to be able to do this and she never did.  Finally, she had to call the radiologist and tell him that she couldn’t do it, he said fine.  We just wouldn’t have that part, if they needed it later, they’d try again.  I said, “with someone else giving me the IV.”  : )

Luckily, it doesn’t seem to be a need for them to do that part of the scan.  Yay!

The results?  I have a Kidney stone!  Well, that was a surprise.  It’s small and not in a place where it’s causing any harm right now, but still, A Kidney Stone…crap.  I just wouldn’t think it possible with as much water as I drink.  Oh well.

The doctor also told me that I have a fatty liver, I don’t have liver disease though because my enzymes aren’t high.  So it’s just fat there because I’m over weight.  I told her, “Well that doesn’t surprise me since I gained 40 pounds in about 2 months, that is one of the reasons I came to see you.”  She said, “A low-fat diet….yadda, yadda….”  I told her that is what I was doing before all this started…she said I still needed to do the breath test to determine if I’m lactose or fructose intolerant.  And then come in for another office visit to reassess.   I told her I’m working with a nutritionist.  She was great!  (I thought, then why didn’t you suggest it?)  Can you tell, I’m not impressed by this digestive health office?

She just keeps telling me to take fiber.  Well, that didn’t work.  I tried.

I’m glad my nutritionist doesn’t believe in a one size fits all philosophy.  She is working with me to figure out the best diet for me, and how to get me healthier.  One step at a time.   Already working with her, my diarrhea has gotten better.  I’m still having it sometimes, but not every day!  Isn’t that exciting??

I’m still hopeful that the patches will work.  Again, one step at a time.

Tomorrow is my hubby’s birthday.  I gave him a gift certificate for a 90 minute massage.  He had it yesterday.  It was so nice to be able to pamper him for a change.  And I’m going to watch the Super Bowl with him.  (I’m not a sports person)  We’ll have fun.  Gluten Free pizza.  Possibly wings. Oh, and Ice Cream from a local Dairy.  (I won’t be having the ice cream, I’m not eating sugar right now, but it’s a great treat for Stuart. Perhaps I’ll put a candle in it.)

ABC’s of Disability – “D”

On By WendyIn Meniere's Disease5 Comments

Todays post is Sponsored by the letter D.

I always have a difficult time picking just one word to focus on when doing these post.

So I’ve decided to not focus on just one word.  I like lots of words and I liked the post about B where we used a lot of different words.  Today, we’ll do that again.

The first natural word to think of is:

Disabled – Yes, we are disabled. But what does that word really mean to you?  Does it mean you can’t work?  that you are crippled? can’t do what you used to? are a different person?  (for me I had to admit I wasn’t as independent as I used to be – I was not able to do for myself everything that I needed.)

Dependent – We are more dependent on others and on things to help us do our necessities.   We are also more dependent on our wits, to figure out how to do more things a little differently so we can be a little more independent.  : )

Dare – We are daring individuals.  We have to do daring feats just to live day-to-day.  With my disease (and I know many of you have Meniere’s too)  we dare to just walk around some days.  We could have a drop attack at any moment…but we dare to live the life that was given us, and not worry about what may happen (most of the time, we try hard).  We dare to survive.

Denial – Sometimes the first part of having a disability is denial.  This can often make it much harder on the person who has the illness.  Especially, if it is progressive, if the person is in denial it can end up in disaster.  For me, I go back and forth with denial.  I want to believe I can do anything if I set my mind to it, I will get on my high horse and start to do this and that…and then I pay for it.  And unfortunately I usually hurt my husband at the same time, because he just wants to help and I push him away.  Denial can come in cycles.  I have to work on acceptance.

Different – So many people I know with a disability are afraid of being different.  That has never been a problem with me.  I think I’ve always been a little different, so this is just fine with me.  So I’m different.  People can accept that or not.  I think it’s harder for people to understand your disability if you try to act normal and you aren’t, then they think something is wrong and they just don’t know what.  I’d rather be up front.  “I’m hearing impaired.”, “I have bouts of vertigo.”  People may not understand, but they know something is wrong, and I’m not just rude and ignoring what they say, or drunk.

Daffy – Well you knew I had to put a funny in here, and no I don’t mean the duck.  You know we all feel a little Daffy some times.  We feel like we are going crazy.  We have all these weird symptoms.  We have doctors trying all sorts of things on us.  We think one thing is working…then it isn’t.  We don’t know who to believe.  And with Meniere’s feeling a little daffy (or crazy) sometimes is actually a symptom!  Don’t worry, you aren’t crazy. (Well, you may be, but I’m not the one to diagnose that.)  Just know that it is normal to feel that way sometimes.

Demon – Ever feel like you are possessed?  Like this isn’t your body any more?  Please, don’t tell me that I’m the only one that feels like my body has been taken over by some demon and it is attacking itself.  OK…maybe I shouldn’t have mentioned that one.

Dreams – With vestibular disorders it is not unusual for people to have very vivid dreams that wake them up many times during the night.  Do you have more dreams now than before?  Do you wake up more often?  Do you sometimes feel like your whole life is just a dream now and you really wish you would wake up?

Do – We are a bunch of people who do stuff.  We still do for other people,  we research our illness to find out as much as we can to help ourselves and others. You may feel like you aren’t doing much, if you actually look at what you do, I think you will be surprised at how much you get done.  And how much you do for others!  We do a lot, but remember, trying counts. So Just try to Do It!

Don’t – Don’t despair.  Don’t feel alone.  A disability is not a death sentence. Disabled people can be strong people who are DETERMINED to live a full and rich life, with our disability, not despite of it.

Please Don’t Judge Me

On By WendyIn Disability, Meniere's Disease6 Comments

This is something I read a long time ago that I have shared with friends and it seemed to help some understand this illness.  I don’t know who wrote it, I wish I did, I’d love to thank her or him.   (I recently found out…see comments, 9-5-2012….that Tina McDonald is the author of this essay….Thank you Tina for speaking for us!)

Please Don’t Judge Me

Author Unknown

Life with Meniere’s Disease : Before you judge me on one of my good days, you need to understand what one of my bad days is like.

Tinnitus – imagine having a headache caused by a fire alarm ringing or a bee buzzing in your ear continually for a long period of time. You can’t hear anything but that fire alarm or bee – It drowns everything else out.

Vertigo – Now imagine yourself as really drunk or with the flu at the same time as the fire alarm is going off. Now imagine that with these two things, you’d be dumb enough to get on one of the super roller coasters that does loop-de-loops or the amusement park rides that spin in two different directions at the same time. I’m not that dumb, but unfortunately I have no choice in feeling these sensations.

During one of these vertigo attacks that can last from several minutes to several hours if not days. I can’t keep food or water down, I can’t walk, and in order to get out of bed to go to the bathroom, I have to crawl like a baby on my hands and knees. The movement makes me so ill, if I’m able to crawl back to bed, I’m covered in sweat from exhaustion. Otherwise, I keep a pillow and a blanket at the bottom of a linen closet in the bathroom so that I can pass out lying across the bathroom floor. I end up sleeping for days after one of these attacks, only getting out of bed to go to the bathroom or to get something to drink, if I think I can keep it down. I have to call my family to see what day it is when I wake up. That is, if I can hear.

You see, this disease while playing havoc with your balance and equilibrium, also reeks havoc with your hearing. It wouldn’t be so bad if the hearing loss was constant and predictable. But no, one day I can hear conversation fairly OK, and the next I can be virtually deaf, then the next day I can hear again. The hearing loss can fluctuate, but is usually progressive, and many with the disease end up severely hard-of-hearing or deaf.

Even on a daily basis, your mind is so confused by the signals it’s getting from your ears that your balance sucks. You run into things constantly because you can’t balance well enough to avoid walking into things, or your mind is telling you the object is a couple of inches from where it really is. I don’t know whether to laugh or cry when someone teases me about being such a klutz. I could make the Keystone Cops look graceful.

I also have days that my coordination just doesn’t seem to be together. I’m carrying something, and all of a sudden I drop it because my brain seems confused as to whether my hand is really attached to my body. I sometimes miss a step and fall because of the feeling that my legs are not quite part of me and I have to focus on them to realize they are there. Apparently this happens because the part of your brain that recognizes parts of your body as belonging to you is the parietal brain lobe and it sits right above your ear, so if the nerves around your ear are inflamed, it can press on this part of the brain, or send the wrong signals to it (I’m not quite sure which), and you can lose coordination.

Ironically, the few high frequencies I don’t seem to have a hearing loss in can sound extremely loud, unbearably so. When a baby cries, an alarm goes off, or a microphone gives off feedback, I’d be willing to climb up a wall to get away if I thought I could make it. This symptom is called recruitment.

The disease also plays tricks on your vision. For some strange reason, the nerve that goes from your inner ear to your brain also controls some of your eye movement. Your eyes can twitch or bounce constantly, making focusing on objects, much less print, extremely difficult at times. Your eyes tend not to be able to “track” movement at the same speed, giving you double vision, and a bad headache.

You can get confused easily and your memory and concentration aren’t reliable. It’s what some people with the disease refer to as “brain fog”. Many of them originally were afraid that they may have a brain tumor or Alzheimer’s because it can sometimes gets so bad. Finally they find either a doctor whose very knowledgeable regarding the symptoms, or they happen to ask someone else with the disease, and find that this too is a symptom of this blasted disease.

Now try to imagine living with this disease never knowing when one of these periods of tinnitus, vertigo, hearing loss, double vision, lack of coordination, recruitment, disequilibrium, or “brain fog” is going to hit, or how bad it will be. At least with being drunk or riding an amusement park ride, you know what’s causing it, and you can make the choice not to do it again. With this disease, there’s very little warning if any for these attacks, you don’t know what’s causing it, and there’s no cure – only devices, surgeries, and some medications that can somewhat help alleviate the symptoms. And some of the surgeries are so radical, you think they came from a horror movie about a mad doctor. My ENT surgeon won’t even perform any more surgery on my left side, since I have the disease in both ears. He’s concerned about what would happen if my right side became worse than what my left side is now.

Understandably, anxiety and depression seem to go hand-in-hand with Meniere’s for many sufferers. We often ask how much worse can this disease get? For some strange reason, doctors aren’t very willing to give out worst case scenarios.

Now decide if you think I’d be able to do the same things you do on as punctual and regular schedule. For me, there’s no way. I’m being up front about my limitations. I try the best I can at living up to my full potential. Could you if you were in my shoes? They think now that Van Gogh suffered from this disease, and he cut off his own ear trying to escape it.

Yet on my not-so-bad days I may look like a totally healthy, able-bodied person. You ask me “why can’t you bend down – pick it up – lift it – drive – get a job – walk without a cane” It’s because I know these things can either bring on an attack – I couldn’t do them on a regular schedule because of the symptoms – or if I did do them, I could put myself and others in jeopardy if I should have an attack. You have to realize that with my friendship, love, dedication, and loyalty comes the fact that I can’t decide when I’m going to have a bad day, and the more stress I’m under, the more likely I will have a bad day.

So, please don’t judge me unless you’ve been in my shoes.”

(Of course, part of this is personal to this person’s situation, but it hits pretty darn close to mine.  I don’t walk with a cane, because I don’t feel like it helps.  I do find that a walker helps when I get dizzy.  It stays steady.  A cane just falls with me.  And of course, you all know that I do have some hope that things are going to get better because of fixing the CSF imbalance.  However,  It doesn’t look as if my right ear will regain it’s hearing and it looks like I will always have tinnitus in that ear too.  I’ll be very lucky if that’s the only symptoms that remain.)

I hope this little essay helps you in some way.  If you are a friend or family member of mine, perhaps it will help you understand me a little more.  If you are a fellow sufferer, perhaps it will help you in explaining things to others.