Lesson Learned the Hard Way – #HAWMC Day 17

Today’s Prompt: Learned the Hard Way. What’s a lesson you learned the hard way? Write about it for 15 today.

When I read this prompt I knew exactly what I’d write about, but not exactly sure the story I’d tell.

photo from http://www.terrygivens.com

I think with my health, the Greatest Lesson I Learned the Hard Way was that Doctors Do NOT always know, they CAN’T always fix you, and they WILL lie.

At 10 I broke my arm, it was a silly way to break a bone, so no one really thought it was broken, until the next day.  My shoulder, and my arm down to my elbow was black and blue.   Amazing. My mother felt such guilt because couldn’t believe it could be hurt that bad.  You see, I was climbing up the side of a hill, not a big hill, I grabbed a root that was sticking out to help pull me up, and it let go.  I fell back.  My feet were only inches from the ground.  I fell on my left arm.  It was my RIGHT arm that was hurting.  No one could understand.  No one but me, you see, I heard the bone snap.

We got to the Navy clinic, and they performed x-rays of my arm.  It caused quite a stir.  At one point, I counted 8 doctors in the room trying to get a glimpse of my x-rays.  They were confused.  Was my collar-bone broken too?  What was all those lines?  We better send her to a specialist.  So my whole side was immobilized, and we were sent to the big Navy Hospital, downtown Charleston, SC.  My mother hates to drive in traffic.  She didn’t get her license until after I was born.  But my father was at sea, she had to be brave, and be the only parent.  I remember being in much more pain during and after the x-rays.  Could they not be a little more gentle with a 10-year-old child?  and maybe give her something for pain?

So we arrived at the big Hospital, to this little girl, it was the biggest building I’d ever seen.  Again, there were many doctors looking at my x-rays.  Many having no idea what they were looking at.  Finally, saying this is very rare in such a young child.  And then taking my mother out in the hall.

That should have been my FIRST lesson – Doctor’s KEEP SECRETS.

When they returned my mother looked a bit confused, stunned, and scared.  I was told I had broken my arm.  But I also had a bone cyst.  A fibrous mass in my bone instead of a solid bone.  It was “NOTHING TO WORRY ABOUT”.  However, we needed to keep an eye on it, and I’d have to have a special cast.  I couldn’t have a whole cast, just a partial cast, because the cyst “needs to breathe” – I will never forget that phrase, I was only 10, but I thought, so I have some foreign thing living in me that has to breathe on its on?  What really was happening, was the tumor would make my arm swell and go down and swell and go down…ect….so a regular cast would not work.  And this was in 1973, so those fancy hard velcroed on casts weren’t around yet.  (actually, the very first one of those was a prototype made for me! after my surgery, isn’t that cool?)

So I broke my arm 5 times.  They kept saying they were watching it, and I wasn’t supposed to be doing anything strenuous because I could break it.  Um, Someone opened a door into me while I had a cast on (was days from getting it off) and broke my arm.  I don’t think I was being strenuous!  I never learned how to play any sports, I wasn’t allowed, I am so uncoordinated and so dumb about any sport activity.  I’ll be asked to play soft ball, I’m so embarrassed, I’ve tried to play, and volley ball…ect.  I can’t do it.  I simply have no eye hand coordination and I’m like a 2 year old learning to play a game.  But I digress.

Finally, I was almost 16, I had stopped growing, it was time to operate.  The bone in my right arm had not grown at all in the past 6 years!  They took some bone from my left hip, shaved it off from around the tip of the pelvic girdle.  (I know what you are thinking, she has chronic pelvic pain, I don’t think it’s from this, most of my pain if on the other side.)  They opened the upper right humerus of my right arm and scraped out the mass, and packed it full of the hip bone pieces.  So they had to fuse together.  (yes, my father says I can literally say, I carry my ass on my shoulder!)

So then the lies start to come together.  While I’m in the hospital I started to hear things.  Like the tumor that was removed.  And the malignancy.  I was given medication via IV, that had a little radiation symbol on it.  I got very sick.  And I was in the hospital for over a month.  I was never told the whole truth.  You know I’m not even sure my mother was told the whole truth.  I do think my father was.  It was that kind of times.  Tell the father, let him decide what to tell the family.  But from the things I got a hold of in the hospital, and the questions people answered before they thought about it….it sounds like, I had a tumor.  Yes, this I do know, I did hear the doctors say that…well, over hear.   I also over heard from the nurses when they thought I was sleeping.   It was mostly benign, but had some malignant cells.  I handled the chemo and radiation treatment well.  “It’s a good thing they got it when they d

That quote still haunts me.  They waited 6 years for my bone to grow.  If they had operated earlier, I probably would have had NO CANCER.  I would not have lost so much of my childhood.  I would have had a solid bone, yes it would have been shorter, so what!  It still is!!!  And I still have pain from it!  They still didn’t fix it.

And remember I was never told this.  I heard it all second-hand.  Not long ago, I tried to get my records from the Navy Hospital.  They said I needed my father’s authorization since he’s still alive.  If he was dead, it could even be harder from what I’ve heard.  I asked him to get them for me.  “For what, you don’t need that.”  I tried to explain, I’m having a lot of medical problems now and any information from my past might help my doctors now.  “I don’t believe that, it’s too much trouble.  I don’t know why you’re always wanting to bring up the past.”  Okay????  Where did that come from?  but I guess no medical records.

So my Lesson I Learned the Hard Way…Doctors do not know everything!  Doctors can’t always fix everything. and Doctors will Lie, or in this instance, at least keep things from you.

However, I have had them lie to me at different times….that was a Lesson Revisit.

A Rat in a Pink Inflatable Cage – and remember Next month will be different.

I had to try to do a quick drawing of this rat in the inflatable cage.
It's just a rough oil pastel. But it got me to drawing!
and hopefully, gives you a smile.
by wendy holcombe 2012 copywrite

The very first thought that came to my mind when I woke this morning after 4 hours and some odd minutes of sleep was,  “I feel like a Rat in a Pink Inflatable Cage.”

The next thought I had was, “Where did that come from?”  Then I realized, that is exactly how I feel.

I’m the clinical rat being tested on and pocked and prodded, trying to find the answers.  I’m living with that, I accepted it, authorized it.  I understand doctor’s don’t know everything, and not every person reacts to everything the same way.  But why the Pink Inflatable Cage?  That was a new sensation, well kind of, it does happen now and then.  I had the feeling I was just kind of in a big bouncy house.  Everywhere I moved things moved just a bit with me.  But the vision it was so perfect.  I had to share even if I can’t quite express it in the perfect words..

Now for why I had such a short amount of sleep.  I was put on a dose of steroids yesterday to help knock out my migraines.  I started them a bit too late in the day, so my last dose was a bit too late.  I’ve taken steroids before, but I’ve never had the symptoms so many warn you of.  The increased appetite, the restlessness, the bouncing off the walls!!!  Well I did find out I don’t quite jump off the walls quite as much if I eat with the dose, but I have to eat a good amount.  Whew!  But I learned this a bit too late.  I got to sleep around 6am, around 10am, I awoke to start the next days doses a bit earlier.  I really need to make sure I finish my last dose a while before sleep time.  So today I’ll be finished about 9pm.  Yay!  Hopefully, I’ll get a whole nights sleep.  Oh, I did happen to get a 2 hour nap.  So I had a little more sleep today.

*I wanted to remind everyone that I’m participating in The Health Activist Writer’s Month Challenge hosted by WEGO Health. Starting on April 1st.  So my posts may seem a bit different.  There will be some of my normal talk in there, but I’m going to follow some of their prompts to make it something different.  I’ve already written some of the posts, and I think you will find some of them enjoyable!  I’ve enjoyed some of them.  A couple I did enjoy, but I know won’t be the style of many of my readers.  I know you are thinking….”She’s already started?”  Yes!  I wanted to make sure if I had a day that I simply couldn’t post, there would be a post ready to go out.  I also wanted to make sure if there was a day I felt good and wanted to and have a happy day, I didn’t want to be concerned that I might not get a post in.  So yes, I’ve started.  No I don’t have the whole month finished!  But the first week is ready to go, and a few more are in the works.  Aren’t you proud of me???

Remember you too can join me, if you are brave enough…or crazy enough, I’m not sure which. All you have to do to join is sign up here: http://info.wegohealth.com/HAWMC2012 and you’ll be able to start posting once April rolls around.

I hope you enjoy the month, if you don’t please let me know and I won’t participate again.  If you want to hear more of my normal rants, let me know, remember these prompts are just suggestions, I can always post my normal way.  This blog has always been a way for me to express my feelings and to help others along the way.  I never want to stray from that purpose.  Please let me know what you think.  And keep in mind, this is just for a month, so let’s play if we can stand it, we might make some new friends, and we might learn a bit.

But I’m open- let me know what you think.

I’ll probably put up a poll at the end of the month to see what everyone thought.  : )

 

 

I’ve been avoiding this…..

For some time now we’ve know that I may have a type of high Cerebrospinal Fluid Pressure, where it rises too high then blows out and goes too low.

I mentioned that they caught it in the high level this last time, and we have a name for it.  Idiopathic Intercranial Hypertention (this is a link to a Wikipedia article if you are interested).  I’m going to call it Intercranial Hypertention of IH while I’m talking today…Okay?

image courtesy of http://wn.com/intracranial_pressure

I won’t sugar coat it….I’m scared.

I’ve talked about some of my symptoms.  They don’t know if they are being caused from the IH or from the medication side effects, yes they are that similar.  Can you believe that?  I will be going back in soon for another Lumbar Puncture.

So why haven’t I felt like this before.  Some times I may have for short periods and just thought a Meniere’s attack was coming on, or any number of my problems, but remember, I’d have blow outs.  Literally, my spinal column would start to leak in weak spots and my pressure would fall, often way too low and I would have those symptoms.  If you’ve been following me for long, you know what that’s all about.

This time, not only am I having balance issues, but it’s affecting my vision.  Remember, I’m losing my hearing at a pretty rapid rate.  Now, I may be losing my sight.

I had not read much on this, I thought my pressure would have to be much higher for this to happen, then I read an article on the Intercranial Hypertention Research Foundation site last night that startled me.  The person who wrote it could have been interviewing me.  Here is excerpt from the article about visual symptoms,

“The most common visual symptoms are:

Transient Visual Obscurations (TVOs): These are often described as momentary grey spots, or a dimming or blackout of vision that occur in one or both eyes, especially after a change in position (such as standing up from a seated position). TVOs are the most frequent visual symptom but are temporary; vision generally returns to the affected eye or eyes after the TVO episode, which lasts approximately 30 seconds to a couple of minutes. They may also be accompanied by pulse synchronous tinnitus.

Blurred vision: Blurred vision may be a direct result of papilledema and swelling in the surrounding retina. It can also be the result of a retinal hemorrhage.

Double vision (diplopia): Double vision can be due to sixth nerve palsy.

Decreased contrast sensitivity: Over time, chronic IH may affect the ability to perceive changes in contrast. Some with IH report examples of this decreased ability, such as the grey or faded out appearance of black text against a white background. ”

It does mention that ” in many cases, the surgery successfully relieves optic nerve swelling and improves or restores vision.”   That was very encouraging.  I’m also very hopeful they will get this under control before things get too advanced, but I have not been feeling good for some time now.

We all know acceptance of a chronic illness is a big hunk of the battle.  Once you accept it, you can do so much more to make your life more tolerable.  But how can I accept this when I don’t understand it yet?  When I feel so confused so much of the time?  When I’m told, who knows, you may have to have a shunt.  Oh, that’s great to hear.  A shunt.  More brain surgery to put a tube in my brain to drain fluid to my abdomen do they can control how much CSF I have all the time.  So if I have a shunt, will this interfere with me getting a cochlear implant?

More questions to ask the doctors.  And the new headache specialist hasn’t returned Stuart’s calls.  Not feeling good about that!

So right now, there are so many unknowns.  I had a strange vertigo attack yesterday.  It was a positional attack, but it wasn’t really.  If I got in one position it got much better but it was still there and everything was doubled.  I was freaking out.  In full panic mode.  Sweating, and these little cries coming out of me, saying something is wrong, this isn’t right….stop, please stop….and trying to slow my breathing…but not doing a good job.  Unfortunately, we were downstairs, and Chris witnessed most of it.  I was mortified.  Finally, I calmed myself down, if I can get to the point where I can just chatter, about nothing, just talk and talk…I can let it go and even if the world is moving I’m somewhere else.

Afterward, we came upstairs.  For most of the night I was off.  The walls are wavy, the floor it tilting, I’m living in a Fun House, but I’m the only one who sees it.  For days I’ve been telling Stuart that I feel like something bad is going to happen, someone is going to die.  Truthfully, I thought it was our dog.  She’s 19, she is doing well, but in dog years she’s close to 100.  Last night I broke down and was convinced I was dying.  I told him how sorry I was, that I know I’ve talked about giving up but I promised I hadn’t given up on him that I was still fighting but I was sure I was dying. At first he tried to say no, but then he knew he just needed to talk to me.  I told him what I wanted at my funeral, or rather who I didn’t want there…I want a party instead of a normal funeral where people remember me and have fun, I told him to display a photo of me when I was skinny, not a recent picture.  I wanted a bouncer at the door, and everyone had to give their name, if someone gave their name who was on the NO list, they were to be told, “I’m sorry, you should have visited her when she was alive, you are not needed here now.”  (Yes, I’m telling him all of this with slurred speech and I couldn’t focus well, but I was sure about all of it.)

So he asked, if you were possibly dying what would you like to do before you die?  The only thing I could really think of was to renew our vows.  I told him somewhere near the water….a nice lake, or the beach, or a water fall (I bet that would make me dizzy though).  He was all for it.  He didn’t realize that I wanted to renew our vows so I could point out to him that they were until Death Do Us Part….and I wanted him to carry on without me.

Let me say right now, I DO NOT think I’m dying. (Well, no more than anyone else is.)   But sometimes lately, I feel like I must be.  My brain isn’t working quite right and that is the only thing that makes sense to me, but then again….my brain isn’t working right!!!

I have been in touch with both my psychologist and my psychiatrist….I’m making sure everyone is looking out after me through all of this because I know my brain isn’t working just right.  One shouldn’t see things, or forget things, or not know where they are….it’s kind of freaky.  I’m so grateful Stuart has the type of job he does so he can be with me all the time right now.

So I’m in a holding pattern right now…about everything

Right now, there are no good days.  I may have some decent moments, but no completely good days.  (I even told Dr. Gray that I feel like shit!) – actually Stuart was on the phone with her and she heard me in the background.  I was trying to stop cursing, my therapist said, it’s probably not a good time for that.  People under this much stress tend to feel better if they curse more.  Alright!!!  Stuart can no longer bitch at me for my language….but I am trying to tone it down..I do get a bit out of control….can you believe it?  Me?

Titty Sling Update – I got too tired again trying on bras…and they let Stuart come in and help me, I’m sorry to all of you ladies who have to do it alone!  Finally I begrudgingly picked one.  I didn’t like it but it served the purpose.  We walked out of the dressing room, and I pointed to a bra, and said, I wanted that one, but they were out of my size.  Stuart looks up on the top rack…thank goodness he’s over 6′ tall!!  and found one in my size.  Once again I said, I’m just buying it!  So we did.  And it fits like a dream!  I love it!  But it’s white.  ick.  I can’t wear white with let’s say…..white.  And it was on clearance – $9!!!!  but no more in stock *sad pouty face*.  We will be scouring other stores tomorrow to see if they have any left!

OH…when I was in the store, an employee, ran into my walker with her shopping cart TWICE!  She was picking up clothes people put in the wrong place.  She saw me, looked me in the eye, and bam!  I have been hit!  She said something I could not understand.  The next time, same thing.  I thought….I’m so glad this store will hire the mentally challenged.  (Wow!  a big difference from the $.02 that pissed me the other day huh?)  I admit she did annoy me, but I just let it pass.  The only thing that really bothered me was that she was also the lady who was in charge of the fitting room.  I asked if Stuart could help me.  Yes, but he had to leave his things outside.  (his things were, his sweatshirt, and shopping bags – not store merchandise)  He asked where, she mumbled something and pointed to a shopping cart full of stuff.  Stuart said, “I wonder if I’ll see that stuff again?”   We did, but we had to dig for it down in that shopping cart.  How bizarre.   But I really felt, mentally challenged, not just lazy like the $.02 lady…. I think that made a huge difference.

So…I’m scared, that’s normal right?  I’m a bit off, somehow I have to hope they can make it better….somehow.

Going to start talking to doctors about disability, afraid about that too.  If my doctors said they don’t think I’m disabled I think I’d fire them.  Oh, I’d be wayyyyy too angry to speak.  I know I’d have a break down right there.  Yep!  So I have an email to my therapist about how to talk to them about this before I actually do it.  I’m way too touchy right now.

The new baby should be here no later than Thursday.  (they are inducing if she doesn’t go into labor before then).  I’ve barely seen the mama.  She has been in the guest room with the door closed in the dark for most of the time.  Chris has been around.  It’s been kind of surreal.  Especially with all the new stuff going on with me, and she was diagnosed with this same thing with the pregnancy, but she seems to just have the headaches.  I deal with the headaches very well, I’ve been having migraines since I was 11.  Poor Penelope has never been sick.  This past 6 weeks has been hell on her I think.  I hope things are easier after Rowen is born.

Forgive the look of the blog….I’m working on it.  I’m still not there yet, but I’m playing.  It’s hard to read a lot because things are blurry so forgive me if I don’t make it to your blog a lot, or if I have many misspellings.  But the graphic stuff is kind of fun (if they would just tell me what size it needs to be)…I’m playing…It will turn into something we all love I hope!!

hugs to everyone who needs one today!

 

 

3 in 1 – 3 mini posts, I need to catch up!

I don’t know what happened with this post, I thought I posted it a couple of days ago.

I just realized it was never published!

A little anti-climatic after my last post…but just imagine you read this one first.  : )

1 – WEGO Health Award Winners

Be sure to check out the WEGO Health Award Winners!  You can find the winners with links on WEGO Health on Facebook or on the WEGO Health Blog Post.  Keep watching these sites for more information about the 2012 Health Awards.  This was WEGO Health’s first Health Activist Awards and they would like your input to help make them even better, you can take a quick poll here http://4159395.polldaddy.com/s/tell-us-what-you-thought-of-2011-health-activist-awards.  I am thrilled that I was chosen as a finalist for the TMI Health Activist Award.  There were many nominations for each category, I hope you took the time to nominate your favorite blogs.  Everyone who is a Health Activist should be proud of what they accomplish.  You make a difference!

Brain MRI - photo from http://www.eldr.com

2 – Monday, January 30th…a day at Duke.

On Monday I had 3 appointments at Duke Medical Center. 12:15 pm Clinic 1D have blood tests.  Since this is a mini-post I will not go into detail about how odd the technician was, and how very painful the procedure was, needless to say, it wasn’t the best experience.  (who takes blood from a person’s hand?  Without even looking for a vein elsewhere?  And fishes around under the skin for the vein?)  Yes, not a goo experience.

1:30pm Lennox Baker Center (located about 2 or 3 miles from the clinics) for Brain MRI with Contrast.  The first person we encountered there was very confusing to me.  I kept getting confused as to what I was supposed to do next, I told him I couldn’t hear, but he just seemed to get frustrated with me…glad I had Stuart with me to help (but he got a bit confused too, so it wasn’t just the hearing issue).  I got an IV for the contrast dye, I have a huge black bruise from this, but it didn’t hurt nearly as bad as the blood test I had earlier.  The MRI itself was pretty easy, much easier now that I can’t hear the extremely loud noises that it makes.  (I also took a Valium before going, so it was much less stressful!)  When the technician took me back to Stuart, he just held the door to the waiting room and left.  Stuart wasn’t there.  I didn’t have my hearing aid.  I asked the people in the waiting room if they had seen another man, and asked them just to shake their heads because I can’t hear.  Everyone said NO…yes, I began to panic a little.  I’ve never been put in that type of situation before.  I couldn’t hear what anyone was saying, and I had no on there who knew me who could help me.  I went back to where we checked in, and Stuart was in that waiting room.  They told him that’s where they would bring me back to.  It was only a bit of a panic for a moment, but once again I’m reminded of how much I must depend on my husband.

Lunch – 2:45 – 3:10 Chipotle – There was really only one faster type place we could stop on the way back to the clinics for my next appointment.  We stopped at Chipotle.  I used to love this place, and I thought I was being very cautious when I ordered.  I had the grilled chicken tacos (no onions or gluten!)  Then I got some guacamole…I love their guacamole.  I didn’t realize until I’d eaten about 2 tablespoons of it that it has red onion in it.  My stomach bloated to such an extreme my loose top was very tight around my tummy, I really looked like I was pregnant!  I had the worst heart burn.  I was not a happy girl…but lunch tasted really good!

3:30 Duke Clinics – Dr. Kaylie’s office – As expected, my MRI was clear.  No brain tumor, a little fluid still around the surgery site, but that was to be expected, it will dissipate over time.  The greatest adventure we had at his office was with the Blood Pressure machine.  First they couldn’t get it to read my BP, then the BP cuff actually blew off!  She fixed it up, and then she took my BP again…it was 175/113!  They told me I couldn’t leave.  The nurse started asking me questions, was I light headed, did I have a headache….I mentioned I had heart burn, she started to look worried and asked if I had pain in my jaw.  I thought…oh great they think I’m having a heart attack!  I explained I had heartburn because I’d just accidentally eaten onions.   She decided to try a different machine, again, after numerous tries it wouldn’t take my BP.  We decided to rest for a bit and try again.  Third machine, finally read my BP 145/92 – yes still a bit high, but after what I’d just been through it was understandable, and Dr. Kaylie said I was OK to leave.  Whew!  I hope my blood pressure is normal next time I go to the doctor, I don’t want to go through that again.

This is a close example of what my new glasses look like.

3- New Glasses

After my appointments at Duke we went and picked up my new glasses.  I was so excited, looking forward to seeing clearer, the frames that would fit better with my hearing aid, the lighter material, and the new look.  I put them on and looked in the mirror and didn’t really like the look.  I’ll get used to it.  (I think most of it has to do with my face being so much rounder.  I’m just not fond of that look!)  In the office I thought I could see fine.  On the ride home I realized I couldn’t read the street signs.  Then yesterday while at class I realized I was having a very hard time going from distance seeing to seeing close up.  Oh great!  My optometrist and I discussed what I do and how I need to see.  She told me that the glasses I have now are single vision lenses., not bifocals.  So I decided to get two pair of glasses, one that is just single vision, and one that are called “computer progressives”.  They will help my vision seeing the computer and reading up close.   After examining the glasses I have now, I realized that they are in fact bifocals.  I’m not sure I would have added the extra expense of the second pair if I’d know this.  I’m usually very frugal about how much money I spend on glasses, but I was so unhappy with the last pair we decided to get the “perfect pair”.  Now for the beginning of trying to get these glasses fixed.  *sigh*

So there we go, 3 short versions of things I wanted to say….unfortunately, I still have much I want to post about.  Receiving the Candle Lighter Award and passing it on…a link to a post about being positive featuring me, and my day yesterday….so much I want to share, you may get tired of hearing from me.

Round and Round we go, when it stops, no body knows

Yes, after writing such a positive post about all the things I’ve been doing lately, I’ve spent the last two days in bed.

Oh my aching ear! image courtesy of dreamtime.com

I have an ear infections, AGAIN!  At least I’m pretty darn sure I do.  The left ear, the one that I recently had surgery on, started draining more (it has been draining since surgery, this is normal, but it was clear and getting to be less and less.  It drains out of my ear because I have a tube in that ear.)   It started hurting, and the consistency of the stuff draining out looks like puss.   I’ve been running a low-grade fever, mostly at night.  And I feel very icky!!  Ugh!  So the world is very off-balance.

Please, don’t think ill of me, but I have about half a bottle of the Cipro Ear Drops my doc gave me last time, so I am treating myself.  (I would normally never do this, but I’ve had so many ear infections, I pretty much know that’s what it is.  I know…I’m recovering from surgery and should get it checked, if it’s not better Dr. Kaylie will see it on the 30th.)  I just didn’t want to deal with making an appointment, and going to Duke, ect ….ect….just days before I have to go in for blood tests, an MRI, and visit Dr. Kaylie.   Also, I didn’t want to suffer all weekend when I could get the medicine started.

Human Gyroscope (image courtesy of http://www.schriever.af.mil)

Yesterday and today have been a bit rough.  I feel like a human gyroscope.  My head feels like my brain is lose and moving around.  I was sitting on the toilet last night and the tile on the floor wouldn’t keep still.  They kept going round and round in a clockwise spin.  Ahhhh!  I hate this, but at least I’m not throwing up for hours on end.

The weather has also changed, so that is a contributing factor and I’m fighting migraines.  To top it all off, I’m just about to start my period.  That always throws a wrench in things.  Not a happy girl right now, but I know it will get better, so hope is always on the horizon.

Does anyone else have a really hard time going to sleep because of spinning?  Even when I’m not feeling off, when I close my eyes and try to go to sleep I will start to feel like I’m moving.  I jerk, and have to calm myself.  Over an over…I’m actually afraid to try to sleep now.  Many nights, I don’t get to sleep until absolute exhaustion overcomes me.  Normally between 3am and 6am.  Last night was a 6am day.

However, another obstacle to my sleep is pain.  Headaches, muscle aches, hips…ect.  It’s all worse now that the weather is colder and it’s raining.  But I can’t live on pain pills.  What to do, what to do?  We know sleep aids just don’t work for me….I’d really like a good nights sleep, preferably on a regular basis.  Exercise would probably help, but that’s just not possible right now.

Whew…a lot of whining today huh?

Don’t worry, this is just a little bump in the road, one step at a time, one day at a time….the sun is right over the horizon…I can feel it…and know I’ll be back to my normal positive self in no time.

**Please note, I have been reading all my friend’s blog entries, thanks to my new phone, I can read your blog entries anywhere.   I really need to acknowledge a couple of posts here, but I haven’t been feeling up to par, and simply haven’t been on the computer as much.  I’ll try to catch up on everything soon.  But I may miss commenting, please don’t be offended.  I’m still reading, and thinking of each and every one of you.

Gratitude

image courtesy of sodahead.com

This post is for the Chronic Babe Blog Carnival all about Gratitude.

I’ve been thinking a lot about this lately.  Everyone here knows the people I’m grateful for…my dear blogging friends, the friends who have stuck by me…and most of all my precious husband.

I could write an entire blog post on how grateful I am to my husband for all he does, but I think I gush about him enough.

One of the biggest things I’m grateful for is this blog!  Picnic with Ants…gives me a place to get out my emotions, to know I’m not alone, to work out problems, to make other’s aware of what my Ant’s are…especially Meniere’s Disease.  When I started this blog I was fighting my illnesses tooth and nail.  Thanks to my friends on here, I’ve learned to accept them as a part of me.  No they don’t define me, but they are a part of me, and I will learn to walk with them.  That in no way means I’ve given up, it simply means I accept this time in my life.

This is a safe place for me.  A place where I can be myself, and if people don’t like it they don’t have to read it, however, I’ve very grateful for those of you who do.

At times I realize I’m grateful to be in this place I am right now.  In a way, yes, I’m grateful for this disease, we call Meniere’s…and my list of other conditions.

I have learned so much during my struggles with chronic illnesses.  I’ve always been a compassionate person, but I think I’m more compassionate.

I notice things I didn’t really see before.  I’m grateful to my doctors who are trying everything to give me some relief.  To the staff at Duke for all the things they do that I don’t even see.  I’m grateful for the orderly who was so kind to me while wheeling me to the recovery room, and stopped by later just to make sure I was alright.  I’m grateful to the guy at my grocery store who knows I’m hearing impaired and will make sure he looks straight at me when he talks and enunciates his words so I can read his lips if I can’t hear what he’s saying.  I’m grateful for the technology that is available today,my computer, my hearing aid…and possibly in the future a cochlear implant.  All different technologies, but all help me communicate so much better than I could without them.

I’m also grateful

  • I can still appreciate the seasons
  • I can still read and escape in a book.
  • I can research doctors, illnesses, treatments…just think a few years ago we couldn’t do that as easily as we can now.
  • I have doctors who don’t mind questions I have, are thrilled that I’ve researched my condition, and who genuinely care.
  • I have health insurance…and that bothers me, it just shouldn’t matter…but it does.
  • that things continue to change.  One day I may be very depressed and blue, but the next day I may see the sun and find the clouds that were so thick over my head are clearing.
  • For my dog and cat…especially my dog.  She has been with me for 18 years, she’s now 19.  A year and 4 months ago we were told she had a very aggressive form of bladder cancer, they couldn’t operate, and she would last at most another year, probably much less.  She doesn’t show any signs of slowing down.  I guess no one told her she was sick.  : )
There is so much in my life I could whine and bitch about…and I do from time to time (more times than I want to admit), but there is so much I’m grateful for…much more than I could list here.
Thanks to Chronic Babe for making me think about all the things I’m grateful for.

More patches to come.

Just a short note.

I’m already feeling icky again.  Dr. Gray wants to try to get me in next week for more patches.  Hopefully, it will work out, but we all know how, her wanting to get me in next week has turned into a month later before.  That’s the bad side of having such a good doctor, she is in high demand.

I know many people are thinking…Dang, can’t they get this right?  Why so many patches?  ect.

From everything bit of research I can find on Cerebrospinal Fluid Leaks and Patching them, it often takes a number of times.  This is a tricky thing they are doing.  Sometimes the patches simply do not adhere to the entire leak, sometimes, they end up being too thin and it breaks through….there are many variables.  Sometimes they just don’t work, and some people end up having to have surgery.  (luckily the patches normally work…eventually.)

So we’re not giving up yet!

 

She’s Low – Again…

Hope you don’t mind, but so I don’t have to tell the story over and over….you know how it gets.

Here’s a copy of the mass email I sent out to friends and family last night:

I had a lumbar puncture today. (as you know I haven’t been doing well for the last few months.)

The doctor expect to find that I had high Cerebrospinal Fluid (CSF) pressure.  She said I had “high symptoms”, so we go in expecting my CSF to be high.  Surprise, it was low.  Lower than it has ever been.  (this was my 6th LP).  She decided, since I had so many symptoms of high pressure, she was going to take some CSF out to see if I felt better.  The more she removed, the worse I felt.  my head started to hurt so bad I couldn’t stand the light in the room and I was getting nauseous.  So she put back in all the fluid she removed, and started adding more.  5cc’s at a time.  She ended up adding 15cc’s extra.  (they said that’s a lot)

My pressure went from 15 to 21.5.  Now they have a number that I feel my best at. if they check me again, they know something is amiss if I’m under or over 21.5.

So right now, I have been taken off all meds that might lower my pressure.  I have to drink a lot.  (I think I already do, but she said more!)  Trying to keep my pressure up without having to do more patches.

I’m hoping that we can at least keep it up long enough that I can attend Stuart’s dad’s wedding.  If it drops after that, I’ll be seeing Dr. Gray again.  She compared the two myelograms (CT scans done with contrast that shows leaks) that I’ve had.  One from November 24th, 2010, the other from August 22nd, 2011.  She said there were no real new leaks, the leaks came from the same places.  I was just breaking through the patch matterial a little on some, or perhaps the patch didn’t cover all of the leak.  Also, from what I understand they didn’t patch them all for fear of making my pressure spike too high.  She said she saw 2 spots she knows she would want to patch if my pressure drops again.

Unfortunately, she said I’d probably notice the results in a week or so, then I could just come in and get patched…but it often takes a month to get in to see her.  That would put a bit of a kink in a trip to Tucson.

So I will drink many fluids, and stop avoiding caffeine so much.  (caffeine can raise your pressure)

Thanks for all the healing thoughts today, I felt them all.  Really, I did!  I think it’s amazing that so many people were thinking of me at the exact same time!  How Awesome!

One last thing  Other than my back hurting a little, I feel great!

That’s how the email ended…then later that night…

The tinnitus started getting loud again, and my hearing kept cutting in and out. (well, the hearing in my right ear, how would I notice in my left ear…unless of course if it came back.)  It was so strange, I’d be listening to Stuart and all of a sudden I couldn’t hear him, then I could, then I couldn’t…We put a new battery in my hearing aid, and Stuart even listened through it for a while to see if it would cut on and off…nope, it was me.

Now today, I still have a buzzing tinnitus that’s a bit louder than I’d like, but I can hear again…not off and on.

Strangeness.

Found a cool article about it…it starts out “A decrease in cerebrospinal fluid pressure may result in an endolymphatic hydrops ….”  Well, that’s interesting.  The case study isn’t like my case, but it’s interesting just the same.

Now, let’s move back to my first arrival at the hospital…

When we arrived to check in we were told I had an appointment on the 17th, but not the 11th.  Stuart explained, that he spoke with Dr. Gray and she had a cancellation on that day, and said she could see me sooner.  The person at the check-in desk got on the phone, and we stood there and waited.  I started to cry, but think I hid it well.  She asked us to wait in the waiting room while she tried to find something out.

I broke down.  I told Stuart that if I didn’t see Dr. Gray that day, I wasn’t coming back.  I’d call Dr. Kaylie and tell him, I was finished with all of this, and we’d have to find something else.  I wasn’t going to continue to wait months and months to see this doctor for a glimmer of hope.  (yes, I know, probably a bit extreme, but if you’ve been reading this blog, you know I have been scared and my emotions have been raw and on edge.)

Finally, they said I did have an appointment, but Dr. Gray was running late.  Very late.  My appointment was at 3pm, and they didn’t get started until after 5pm.  (I think they messed up the scheduling and I didn’t have an appointment, but Dr. Gray decided to see me as the last patient.)  But at least I got in there, and I know something now!

I’ll share with you the first doodle I did in the waiting room:

Little Miss Sad Mad
As you can tell this little lady (my inner self) was very mad!  Gnashing her teeth, sparks flying from her head…I wouldn’t want to be in her way!!  On the other hand, look at the eyes, they are very sad…poor thing so conflicted.
My next doodle was much more…well, just a doodle, but Dr. Gray saw it and just went on and on about how I was hiding being an artist…and how much she loved it…so I gave it to her.  She hugged and kissed me.  (maybe if I need another appointment, I will use a drawing as a bribe to get in sooner!) hehehe
I’ll keep you posted as my symptoms change.  (headache is barely there today!!!! and I’m not dizzy!  Woo Hoo!)
I’m sorry I haven’t been keeping up with my reading and commenting on other’s blogs.  I will try to catch up soon, I promise!  Hope it’s all good news.
Thank you all again, for the caring comments, thoughts, notes…ect.  It means more than I could ever express.

Why am I so nervous?

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

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

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

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

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

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

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

That’s where my head is tonight.

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

Window of the phases of my life.

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

Time to say something again…but what?

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