Tag: tinnitus

What Makes the World Go Round???

On By WendyIn Meniere's Disease8 Comments

What makes the world go round, and round, and round…I don’t really care I just want it to stop!  Please…oh please!  (I’m asking very nicely…please.)

Spinning world. Photo Manipulation by W. Holcombe

Since Wednesday I’ve had almost constant vertigo.  On Wednesday, I had two vertigo attacks.  On Thursday morning, I woke up about 6:30am spinning.  I was dreaming, and in my dream things started to spin, I woke up and it was still spinning, not a good way to start the day!  On Friday, I had a very severe headache with vertigo for most of the day.  Today, I woke up around 8:30am, again, spinning.

This has been a turbulent week.  Luckily, most of these attacks weren’t the gut retching kind.  Most of the time, I’ve just had to keep my head very still, and things were bearable,  but if I move, even fractionally, the world spins.  Today, it has lasted all day.  For the first 5 hours of the day, the only relief I had was when I laid on my side, with my head very still.  If I moved slightly the world spun out of control.  While lying down it was just a bit wobbly.  Unfortunately, I also had some GI issues today, and those 10 feet from my bed to the toilet were a harrowing experience.  Finally, things have calmed down a bit, but still if I move my head, the world spins.

I see Dr. Kaylie, my Otolaryngologist and Vestibular Specialist,  on Tuesday.  We have to discuss different treatments, including having the endolymphatic enhancement surgery on my left ear, or streptomycin injections (to kill the balance nerve)  I can’t stay like this.  My husband is looking for a new job, he can’t be afraid to leave me alone.  I can’t be terrified to be left alone.  However, it will be hard to undergo an expensive treatment right now.  umm..hubby unemployed, COBRA for insurance.  Not only are the COBRA premiums outrageous, but we still have to pay 30% of any procedure.  I hate that healthcare is so unfair.  When we get our bills from the hospital or doctor, it has the cost, then the deduction because we have Blue Cross, then the amount the insurance covers, then what we pay.  (often just the co-pay, unless it’s something special, like surgery.)  If we were charged the deductible amount, like Blue Cross is, we could pay for it without insurance, the premiums from COBRA are so high, it would cost less if we could pay that way.   Our healthcare system sucks!

A little story about why Stuart and I got married when we did….  Stuart and I were engaged, but we hadn’t set a date.  His mother had breast cancer, she had been in remission, but unfortunately, it returned.  We didn’t want the stress of our wedding making things harder for her.  We wanted to wait until she felt well enough to enjoy it.  Unfortunately, the cancer spread, and she died before feeling better.  (yes, if we had known this was a possibility, we would have gotten married sooner, so she could be there….hind sight.)  The week she died, I found out I’d be losing my health insurance in 3 months.  So we planned a wedding, fast.  We got married on Stuart’s parent’s anniversary.  In a way it was nice that we had something so joyful to plan and think about right after Stuart’s mother’s passing, but in an ideal world, we would have put more time between the two events.

Yes, you could technically say, that Stuart and I got married so that I could have health insurance.   That’s just not right.   We should not have been forced to choose our wedding date based on health insurance.   (It is a big joke in the family though that we are the only people they know who can plan a wedding in less than 3 months for less than $2000!  And it was a nice wedding too.  Small, but very beautiful, and very, very special.)  Perhaps I’ll tell that whole story at some point.  My point right now is that NO ONE should have to do without health care because they don’t have health insurance.  I wonder how many people get married so their spouse can have insurance?  Or how many people stay in a job they hate so they or their family will have health insurance?  The priorities of our government is just so skewed.

*Jumping off of my soapbox now*

I have a big request for any of you who have to go through these attacks alone:  Please give me any tips you have on how you do it?  I’ve done it in the past, but I used to have clues that an attack was coming, so I could get prepared.  Wet cloth, empty buckets (or at least to the toilet)….  Now it happens very suddenly, no warning!  Bam, I’m spinning.  Today I had the hardest time just reaching in my night stand to get my medicine.  So, any advice?  How do you do this alone?

I’m not alone….d*$& it!

On By WendyIn Chronic Illness5 Comments
I Am Not Alone. by Wendy Holcombe Nov. 2011

After posting about my attack on Wednesday, I had an outpouring of people who either commented on the post or emailed me personally to tell me I’m not alone.  As comforting as it is to know someone else understands, it’s heartbreaking that there are others who have to go through this too.

I really wish that no one could empathize with me.

One thing about my attacks recently, they don’t last as long as they used to….but it feels like they do.  I’ve had attacks last over 12 hours, the last one lasted over 3, the one before that was less than an hour, yet each felt as if they lasted for an eternity.

Angelea from A Day in the Life with Meniere’s said, “The only thing that keeps me hanging on through an attack is that, at least so far, they eventually end within 8-12 hours.”  I’m the opposite, every time I have an attack, I’m terrified it won’t end.  I know it always has…but what if this time it doesn’t….it’s unimaginable, yet…it fills me with terror.  I’ve read of people having vertigo for extended periods of time.  Weeks, months, years… indefinitely.  Do they always feel like I do during an attack?  How do they live?  Or are they using the word vertigo loosely?  I know it varies in intensity, but all I can think of is the terrifying sensations I get.

Most people who write about their attacks, don’t go into the detail I have.   We all know they are horrible, but somehow I wished for my friends that it wasn’t as bad for them.   I was even a bit surprised when I heard how much so many of you could relate to everything that was happening to me.  (I really wish you couldn’t).  We hear each other say, I had a bad attack complete with throwing up for hours….but we normally don’t talk about the rest.  Thank you all for sharing your stories with me.  People (especially our doctors) really need to understand the torture we go through.  I keep wondering if these specialist we see have ever seen an attack.   Do they just know what they’ve read, or have they ever experienced anything like it?  Or seen a loved one go through it?  (I plan to ask my doctor the next time I see him.)

I emailed my doctors.  I heard from Dr. Gray already, and unfortunately she is also thinks that although I’ve had some good results with the patching, the results to not stay sustained, and this does not look to be a long-term solution.  That was hard to hear, even though I already knew it in my heart.  We’re waiting to see what Dr. Kaylie thinks my next move should be.  I had good success from the endolymphatic sac surgery on my right ear.  I’m almost positive that the majority, if not all, of my attacks since I had the surgery have been from my left ear.  So that is a consideration.  It’s a rough surgery, and recovery is hard.  From what I’ve heard from two other friends their recovery was much worse than mine.  So I do know there is a chance that it could be worse next time.   However, I haven’t talked to Dr. Kaylie yet, we’ll discuss my options and see what happens.

I’m so confused by all of this though.  I’m not sure if we’ll discontinue trying to keep my cerebrospinal fluid regulated.  I would think that we’d need to do this.  So many questions.

Again, I’m going into this bad time just as the holidays approach.  Last year, I had to wait from early November to late January before I had my second set of patches.  That was some of my darkest time.

I say so often, that I accept this illness, it is a part of me.  But I think a lot of that is what I want to believe.  Today, I broke down and just screamed…”I DON’T WANT THIS TO BE HAPPENING TO ME ANY MORE!”  I thought it was better.  If I could have seen this future in January, I would have spent those months symptom free so differently.  I tried to get my life back, to start a future.  I spent 30 class hours plus many, many hours outside of class, working to become a foster parent.  I started a garden.  I bought a car.  I bought hearing aids.  My life was all falling into place….then it came crashing down.

Now I look back.  If I had known all that I was doing was wasting time.  We won’t be able to foster.  The garden died.  I now have a car I may never be able to drive, and I have a hearing aid that sits in a box because my hearing has deteriorated so much in that ear it’s useless.  ($2000 for 3 months of use, I don’t think that’s a very good bargain.)

So if I could have peeked into the future, I would have told myself to live every symptom free day to the fullest.  Travel.  Spend as much time with friends as possible.  Go, and do the things you can!  Don’t waste a day!  And most of all, don’t plan for the future!

So yeah, I guess today I’m having a pity party.

I keep thinking in January, before the patches, I was contemplating suicide.  I can’t go back to that.  I just can’t.  But if I get to the point where I’m having the horrific attacks multiple times a week…often every day…I can’t say that I won’t fall back into that deep dark hole.

No this disease is not me, I do accept that it is part of me….but when it takes over my life and becomes all of me, that, I can’t accept.

I know, I’m jumping the gun a bit, and have some major issues with regrets right now.  I haven’t given up, and I’ll keep fighting for me.  I’m not fighting the illness (as in not accepting it), but I am fighting for my life.  For some balance.  For some relief.

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J, and NaBloPoMo.

A MUCH better day!

On By WendyIn Meniere's Disease7 Comments
Lucky Lucy

After feeling so sorry for myself, and having such a down week…today I felt…as close to normal as I remember!

My hearing is still off. (Down, Distorted) However, no headaches, no spins…I’ve had a great day!!

Went to Weaver Street, my favorite grocery store (Co-Op) that’s about a 30 min. drive from my house.  Stuart and I had a fun afternoon, I even cooked steaks on the grill for dinner.  And scrubbed the bathroom shower door!  No more water and soap scum stains.  (I know the whole bathroom needs it, but one little bit at a time.)

One bad thing, every night I’ve been running a slight fever (actually it’s pretty high for me because my normal temp is way below normal.  Around 97.4F, tonight it was 98.8F)  And I’m achy all over.  Took some Tylenol, it’s better, but not gone.  Dr. Gray said that the fibrin glue they used for the patches can sometimes cause an inflammatory reaction, and cause this, but it should go away soon.

I heard from my Psych.  He was very upset that he upset me in our last session.  He said he would be happy to be my provider as long as I wanted and felt he was helping.  Plus, we are going to try another drug, Effexor, hopefully, I won’t have the side-effects.  It’s also supposed to help with vertigo!  Woo Hoo!  If I can tolerate it.  Some drugs I have all the side effects, especially the obscure ones, and other drugs I have no side effects at all.  Hope this falls in the later.

I was in a whimsical mood today, so I drew Lucky Lucy.  Nothing like what I’ve been doing lately, but she was fun!

Here’s hoping all of you have as normal a day as possible.

 

 

Quick update…well, perhaps not so quick..

On By WendyIn Chronic Illness, CSF, Health, Life, Meniere's Disease9 Comments
Thought I'd share a sketch from my journal I drew last week. She looks a little sad doesn't she?

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

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

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

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

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

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

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

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

Once again, I’ve bared my soul.

thank you all for listening.

Emotions from A-Z

On By WendyIn Chronic Illness, Pain, stress5 Comments

I feel like my emotions are all over the place lately.  The stress I’ve been under is starting to wear on me.  Funny, I wasn’t even aware it was there, I thought I was handling thing pretty well.  For the past few days, I’ve found myself just crying.  Crying and crying.  My thoughts are all over the place, and I just feel…I can’t think of a good word that will fit…so I sat down last night and listed the letters A – Z and beside each letter, I wrote the first thing that came to mind.

  • A – Abandoned
  • B – Blame / Blue / Bad /Brave
  • C – Confused / Condemned /Caring
  • D – Desperate / Disabled
  • E – Effort / Easier
  • F – Fear
  • G – Grouchy / Groggy / Guilt /Grateful
  • H – Helpless /Hopeful
  • I – Internalized
  • J- Jumbled
  • K – Kicked
  • L – Loved / Lacking / Loathed /Loud
  • M – Mixed Up /Migraines
  • N – Nuisance / Nauseous
  • O – Overwhelmed
  • P – Put Out / Placated / Period / Pain
  • Q – Quizzical /qi’  (ch’i)
  • R – Rough /Roar
  • S – Sedated /Strong / Stressed
  • T – Tearful
  • U – Unexplainable
  • V – Vexed / Valium / Vertigo
  • W – WHY? WHAT?
  • X – X-irradiation (X-Ray, but doesn’t X-irradiation sound cooler?)
  • Y – Yanked
  • Z – Zero
During this exercise, when I’d think of certain letters, a ton of words would pop in my head.  Other letters, produced little…but they all said something.  Yes, much is negative, but there is some positive in there too.  On a different day, perhaps the positive would out weigh the negative…but today…well…
There is so much going on inside me right now, that just will not come out.  (perhaps, I’m afraid for some of it to come out.)
Having my psych tell me that he felt I needed to fire him, really caused a downward spiral for me.  Not that he would say that, I respect the fact that a doctor would say that if they feel they can’t help you…but the timing sucked.   Not only did I feel abandoned, I felt untreatable.  If he can’t figure it out, why should any other psych be able to.  I’ve always been impressed by D’s knowledge, and willing to learn more and more.  I can’t imagine having a better psych.  I’ve had a few…I know there are some real losers out there…I don’t want to go through that again.
I’ve had some other things happen lately.  This camel doesn’t have many more straws in can carry.
One day at a time…that’s all I can do.

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.

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.