I’ve been avoiding this…..

On By WendyIn Chronic Illness15 Comments

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!

 

 

Chrome and my WordPress blog are getting a divorce…or at least a separation.

On By WendyIn Chronic Illness14 Comments

**Warning before this is started….I am going to rant…most of it’s just me….some of it may be the fact that they changed my meds and I’ve been up and down A LOT for 2 days (6 vertigo attacks yesterday – much better today)  so, sit back and enjoy the ride…or just switch it off…or laugh at me…preferably all but turning me off!*

For some reason, a few weeks ago…or more, my blog has not been playing nice.  At least not when I was using Chrome.  I tried all the tricks I was advised to do…all about cookies and cacheing…and stuff…yes I will admit it I’m a  bit of a nerd but I am in no way a techie.  Well these things didn’t work.  So, Stuart and a techie reader (please feel free to take credit if you wish, I didn’t want to “out” you if you didn’t want me to), suggested I try to post from a different browser (yes, at first I looked a little dumb founded, but I’m blaming that on the medication, because I did figure that one out.  It did take a moment because Stuart said, try posting from IE….I said, “what?  You know I hate acronyms!” ‘Unless I make them up.” OK, he did have to tell me that IE is Internet Explorer…how dumb….wasn’t there some old sci-fi movie called something like that? – no that was AI – I was close. )   OK….I tried posting in Internet Explorer since it was already on my new computer.  Guess what, it worked just fine.  Well that just ticked me off.  Everything I do is Google based.  OH…then it hit me…almost everything I do is Google based!

Suddenly I felt that Big Brother had taken hold of me and I hadn’t noticed it.  Even my new phone is an Android….please can someone teach me how to use this darn thing?  I can’t even get it to sync with my Google Calendar!  Or do coupons!  Why else would I buy a phone?  I don’t talk on the phone!  I CAN’T talk on the phone!  I should get some use out of it!!  But that is another rant for another day.

Suddenly I was afraid that my readers who run Chrome weren’t able to see my blog correctly.  So I grabbed Stuart’s computer and went to my blog as if I was just a lurker, and no troubles.  Yay!  At least all you Chrome users who are reading my blog shouldn’t be having any troubles.

Another suggestion from a techie reader, try using Firefox to run my blog through.  So I am.  Right now.

Look, I can add tabs!  I can search! I can add photos!  I can do all kinds of things that I couldn’t do before.

I wrote WordPress, I didn’t get a reply…not even a reply saying, we’re sorry but the volume of email that we get means it will take a long time before we get back to you..or something like that.

Nothing.  I kind of understood..after all, I have a free account.  But for some reason I have a feeling if I had a paying account I wouldn’t have gotten much better service.  A week or so after the first email I went back to support to see if anyone else had reported a problem and to try to write them again.  I got a message that said, WordPress Support is closed until March 6th.  No reason, nothing.  Just try the forums.  It was at least a week before the 6th at the time, so I kind of wonder if I had a paid account would they have a special support team for me?  I don’t want to talk WordPress down.  They do a good job for a free service, and I personally know no one who has the paid version…or if I do we haven’t spoken of it.  I’d just like to know if they give more customer service to their paid accounts.

So for now…my WordPress Blog and Chrome will be parting company.

Firefox will be my browser for now.  I used to use Firefox all the time, then hubby suggested I use Chrome and so I did, now we’re both talking about going back to Mozilla…Firefox.

I may even put it on my phone.  However, I think my Smart Phone is smarter than me.

photo from http://www.techturning.in/2012_01_01_archive.html

 

I have much to post about.  More about my new diagnosis, my feelings, my crazy head…and just weird things about all of this.  Plus, I’ve received a couple of awards from some very generous bloggers!!!  I really need to take time to post an acknowledgement and pass them on.

I apologize if it takes me a little longer.  I’m still not feeling well.  I feel better for a little while, then awful for a while….then back again….it’s a crap shoot.  I’m trying to read as many blogs and emails as I can, and comment on some, but on any nice days where I feel nice, I’ve been taking advantage and getting out of the house, even if it’s just for 3o minutes.  But sometimes, that’s the only 3o minutes I have in a day.  (I used all my spoons)

Hope you are having a nice beginning to March!  I’m hoping to get a few little seedlings started soon…I wish I had already.  I want to at least have my herb garden again!  And the wild flowers. (maybe smaller ones this year.)

Love and Light to all!!  I do have much to talk about.  I hope we can all get a great discussion going about how we handle things when we think we’ve gotten everything handled and accepted, then something new happens.  I’m trying, but this is a rough one.

We’ll talk about it tomorrow if I can.

Please Be Aware….and Don’t take me Seriously….

On By WendyIn Chronic Illness11 Comments

The medication I’m on makes me very loopy at times.

VERY LOOPY.  Not just drunk…we are talking drunk, eating pot brownies and possibly doing ludes.   (yes i was a wild child and was not a stable bipolar chick…I did not do drugs often, but when I did I was not responsible.)

It is not the same when you choose to do these things and it happens, and when it happens out of the blue.

I have found myself acting very much unlike myself, and saying things in ways I would not say them.

PLEASE DO NOT TAKE OFFENSE!!

I sometimes do not know where I am.  I woke from a nap yesterday and thought I was drowning because in my dream I was at the beach swimming, then all of a sudden I was tangled in my covers, which I assumed was seaweed.  Then i noticed things had changed.  Stuart came in and thought I was having vertigo, when I have vertigo I get very hot, he went to take my covers off and I jerked them back…how dare he!  I didn’t know him!  It only lasted a moment, then I realized he was familiar, but I was still scared….then I realized who he was I then it really got me scared that I didn’t know who he was.

But back to how I’ve been talking to people.

I ramble….yes me…but even more than usual…and I laugh a lot. and am very sarcastic.

Oh….I wish I just wouldn’t comment….but I don’t think about it until afterward…at least not coherently.

So….I’m getting used to the meds, but we aren’t there yet.

Thank you for your understanding.

I’ve said it before, and I’ll probably say it again…what a difference a day can make.

On By WendyIn Chronic Illness6 Comments

Today was a breath-taking beautiful day.  The sun was shining, it was in the 80’s F….yes the 80’s on the first day of March!  A good friend of mine just got married!  I’m so very thrilled for her, you may remember me passing along the candle lighter award to her….Congratulations Fiona and Jeremy…I adore you!

I slept longer than I have in a long time, I woke up with a minimal headache (my normal every day type of headache).  I was still seeing double but it didn’t seem to last as long.  I lounged in bed for a while with the window open and enjoyed my breakfast.  Then I read a bit on the computer and decided to get dressed for the day.  We were refinancing out house to a better rate, and we had to sign all the papers at the lawyer’s today, so I had places to go.  I decided to start getting ready very early.  About 2 1/2 hours early.  Just in case.  I wanted to do a little then rest, do a little more, rest…eat lunch….rest….you get the idea.

You would be so proud of me…I know I was.  Darn I should have gotten a picture!!  I French braided my hair.  I’ve never been able to do that!  It has always turned out lopsided or with straggling hairs, but usually it is a “Dutch” braid.  A French braid lies flat against your head the Dutch braid is kind of backward, it looks like a braid stuck to your head….it sticks out.  It’s kind of neat, but not what I wanted.  And…imagine this, I did it on the FIRST try!!

I tried on a few things to wear, but the one’s that I don’t look like a blimp in were too hot, I admit I was getting sad and upset.  Then I thought of a white tank top with an orange cap sleeved sweater over it that has one button around the abdomen that makes me look much thinner.  I actually put on makeup!!  I got ready, got dressed, and got down stairs….all by myself.  I was beaming with pride.

Stuart and I decided if I felt well enough after our visit to the lawyer we would have a date night and go to Fishmonger’s.   I LOVE crab legs.  I know he just got them for me on Valentine’s day…but it was so nice to have a date night with my hubby.  In a restaurant right across the street from where we met.

Fishmonger’s is one of those little seafood restaurants that make you feel like you are on the Carolina Coast.

This is the type of tables they have there.

I am having a very hard time with my hearing.  Stuart needs to step up his ASL practice.  On average I have to ask someone to repeat themselves at least 3 times, and after that I just drop it.  It’s too embarrassing.  And it’s usually just some small talk.  I can’t remember if I’ve mentioned it here, and I’m too tired to look back and finish this so I’ll give you the short version.  Saw Audiologist on Monday.  She thinks I’ll need a cochlear implant soon but the requirements change with insurance companies.  We have new insurance starting this months.  (they are going to love this) The first question Stuart is going to call and ask is what

their criteria is for covering a cochlear implant? The surgery cost between $30,000 and $100,000 and our out-of-pocket will be $150 Yay!!!

So I may have told you…forgive me.

So while we were out, it came time for my medication. All of a sudden I had a sharp pain in my head, I asked what time it was, exactly time for my medication! I asked if we happened to remember….ooops, nope. So I was 2 hours late taking it. By the time I got home, I was not able to walk unaided, I was slurring my words, I had to really concentrate to understand things…..it’s kind of funny, in a way I feel like I’ve taken some drug…like a downer or something. But it’s all being caused because I missed my medication. Ahhhh!

Right now I’m running a fever again. Every night, only at night. Strange huh? I take some Tylenol it goes away.

I still have a lot fo figure out with all of this, and it will take some time. It is apparent that I’m getting better with the side effects and I’ll probably get even better when I get some potassium (Diamox is known to deplete potassium.) I have been trying to eat a banana a day, but it’s hard when that’s the cap on the amount of fruit I can eat in one day. So we went to buy some and the store was out. How rude!

I’ve been watching these cooking shows and now I’m just dying to cook. But I need to be more steady on my feet for that. Perhaps I see some slow cooker meals in the future. (much less dangerous, I can just instruct Stuart.) I bought some herbs recently, and got a free ounce of Saffron….oh….what will I do with this delectable spice?

Also, if you have never heard of or tried Pot Herb – it is a mixture of Chives, Chervil, Parsley, Thyme, Marjoram, and Bay leaves. This was delectable in Chicken Soup..and just on chicken….I can imagine so many things to do with this blend…why have I never heard of this french blend of spices before?

So…

What a difference a day can make. Do I feel this much better from all the well wishes? The joyous feelings I have for my friend? The fact that the Topamax was uped? The beautiful weather (you know I got to take the top off!!), or have I once again, simply decided enough. I can’t stand to live with you like that! Get up! Pick yourself up…even if you need help, and find something that satisfies you. even something small…and build it up again.

That’s why I say those silly expectations I had for this life…they must be fluid now, and change as I do.

Thank you all for believing in me.

 

 

Do you ever feel like just giving up?

On By WendyIn Chronic Illness13 Comments

I know I’ve talked about this topic before.  We all know I’m not going to kill myself.  But I find myself many times a day thinking….no wishing….that this would just end.  I’m simply so very tired.  I hear myself saying it all the time….I’m so tired.  I didn’t know I was fighting so hard before, but then when everything was drained from me, and I was left cold and alone with just me and my illness, I realized I had been fighting….and now I was losing.

I don’t want to die, and frankly if I did, I’m way to scared to do it myself!  The thought of the pain, the morbidity, the mess, who would find me, and my poor, poor Stuart.  Oh no, I couldn’t do that.

But I do want it to end.  Yet, I know the best I can hope for is that it will get a bit better.  It will never end…until I do.  And that’s not what I want…Really it isn’t.   This  past month has been a complete terror to me. It has worn me down, beat me, and made me into a person I often don’t know and don’t really like any more.  I never thought that my diseases might kill me until this past month.  The pain, the sickness, I got so very, very tired…I just could not see going on.  I could not understand how anyone could get this sick and not be dying.

I don’t believe I’ve explained all the details of my symptoms of those 25 days, I just gave the high-lights.  You all know about the migraines that varied in intensity on a scale of 0-10 (see my photo scale above) between a 6 and a 10 EVERY  DAY.  I had constant disequilibrium, and intermittent vertigo EVERY DAY.  I also started to have new symptoms.  For one the vertigo was not like the vertigo I get with Meniere’s (thank goodness).  Usually it was positional.  If I was lucky I could find a sweet spot and find a place where if I were very still the vertigo would stop or at least slow down so slow that I could handle it, but often I was stuck in that  position for hours.  I have also been having symptoms with my eyes.  Double vision with my left eye (always when I first wake up and when I’m very tired).  I see shimmers or movements out of the corner of my eyes.  I often think someone has walked by, but I’m alone., and the last one  I was seeing shadows and lights that didn’t match up with the lighting in the room.  I felt like a ghost was following me.

Now, I’m on the new medication, Diamox!  Things are getting better…yes on some points.  But the Side Effects are not fun.

Please know I have talked with my doctor about all of the following side-effects, she said most will subside, and if certain ones get worse to call her immediately.   With that said, these symptoms are driving me crazy.

  • tingling in the extremities.
  • drowsiness
  • excessive thirst
  • excessive urination
  • fever (this one we are watching, right now it’s low grade)
  • confusion
  • loss of appetite
  • and all of those that I’m already having….you know….things like….
  • dizziness,
  • nausea – vomiting
  • this one I just love…Headache!  (I know that’s incase that get it too low, but dang!)
  • muscle cramps
  • more bruising….well, let’s see doc, I fell down in the bathroom night before last because I was so confused from this drug, so I’ve got a lot more bruising, does that count.

Oh, my goodness, I do sound like a sourpuss don’t I?   But sometimes don’t you just feel like the cure is almost as bad as the illness.

And can you tell me why…all you very wise people out there…why is it bothering me so very much that I can’t get out and go anywhere or do anything that I want when I want?  I’ve barely driven in 3 years, but NOW I’m pissed because I can’t go somewhere when I want, and I’ll probably get sick before we get there and will have to come straignt home.  But oh…it just bites my butt.

And I’m very grateful that Chris and Penelope have been here, he’s been wonderful at cooking dinner, but even though I don’t feel like cooking..I’m beginning to feel funny about him being in my kitchen all the time.  I think I’m afraid he’s a better cook than I am and I’m jealous.  But I’m also jealous because, I want to be in my kitchen making new things, creating new dishes with the new spices I just bought.  Oh…so sad.  I miss my kitchen.

Please forgive this, but I’m having a hard time with Penelope’s complications.  They have found out she has pregnancy induced Intercranial Hypertention…Yeah, High CSF!  What are the odds.  So I have to hear all about it.  But in 2 weeks when the baby is due, her’s will most likely be gone.  Very rarely does it not go away when the baby is born.  So I think I’m a bit jealous of that.  She gets cured and gets a baby at the same time.

My lord, I’m pitiful.  I’m jealous over the stupidest stuff.  But really I’m very glad they could stay here and be comfortable here.  I’ve baredly seen them.  They seem to be doing fine.  Penelope stays lying in a dark room a lot.  I find sitting up much more beneficial to me when I have a high CSF headache, but to each his own I guess.  From what she’s told me about the guys who’ve given her LP’s I have not been impressed.

We dropped by Target on the way home today and I bought something that cost $1.07, I gave the woman $!.12.  She just hit the total button and put in the money and then had no idea how much I gave her or how much she should give me back.  You could see this complete blank look on her face as she looked at the receipt.  I said, “the change should be 5 cents, I gave you a dime and 2 pennies.”  No you just gave me a dime….oh, I was already ticked off that I had to beg to drop by Target on the way home, or normally I would have said, why don’t you just keep the change.  But no, not today.  “NO, I gave you 12 CENTS, you owe me 5 CENTS, and I don’t want pennies.)  She slammed the 3 pennies she tried to give me in the drawer and gave me my nickle.  and I didn’t feel bad about it at all , until just now.  And still I don’t really.  People do not take pride in their jobes any longer.  I used to cashier.  I was never more than 5 cents off….over years and years at different places.   People need to take pride, no you may not be getting more than minimum wage, but neither was I.  However, I still did the best job I could.  Is that so wrong?   I had a job managaging an art gallery, and worked part time at a little store making minimum wage, I worked just as hard at both.  When you are interviewed and you are asked if you are willing and would like to do this job and you say yes….then you do it!

So, this post has gone from me wanting to give up….I’ll talk more about that later.  I’m not giving up…but I am changing those expectations!!

To having a good work ethic, and I haven’t worked in 8 years.

Ironic huh?

Even The Doctor can’t fix this mess.

On By WendyIn Chronic Illness6 Comments

Even The Doctor can't fix this mess.

I’m still having a hell of a time with WordPress.  I wrote a whole post and put in this photo and the post was gone and only the photo remained.  I’m getting angry.  They better do something soon.  Or I’ll….oh I don’t know.  sic the New Dr. Who on him.  But Baker was one cool Doctor you do have to admit.

OK for all you geeks or nerds out there…who know who Dr. Who is….who is your favorite.  And you are allowed to have a favorite from the early series and one from the new series.

Now about me…I’m better but far from being fixed…but I don’t want to write it all again.

This medicine makes me loopy., it’s hard to concentrate and I’m very very tired.

so…I suggest sleep for us all.

and…for Fiona.  I love you my dear.  I may not be able to be there in life, but I will be there with all of my heart.  Tell Jeremy he’s a very lucky man…and I know he knows it!  You are so strong! You will have an amazing life as husband and wife.

Shaky Dance for All!!!

Day 23

On By WendyIn Chronic Illness, CSF, Fructose Malabsorption, Headaches, Meniere's Disease, Migraines, Pain12 Comments

*first….I’m having trouble with my blog, I’ve written WordPress but don’t know what’s going on yet.  I cannot post any images or tags.  Sorry*

Last night I started on Diamox, per doctor Gray’s instructions.  Still talking a little Topamax, I have to wean off of it.

I admit I still wasn’t feeling great in the evening, well I haven’t felt “great” for a long time, but I wasn’t feeling good.  We decided to watch some things on Netflix because I was afraid to go to sleep.  First we watched Donkey X, a silly animated movie about Don Quiote and Sancho as told by Sancho’s Donkey….OK…that’s the very short synopsis, but really that’s not why you are reading this post is it?  Then we watched a number of old Dr. Who’s – the old one’s with Baker…if you are a geek/nerd type then you know Baker is the Doctor who had the very long scarf and the curly hair.  (perhaps the most famous Doctor of all – unless you are under 20, then it would be David Tennet) – again, not why you are reading this post huh?

Finally, I decided to try to sleep.  I have found I feel a bit better if I’m not lying flat.  So I propped myself up a bit and I do believe I was asleep before my eyes were shut!  I woke up about 4 1/2 hours later with a headache in about the 4 range.  A 4!  OK, for those of you who don’t realize what I’ve been going through (here is where I really wish I could post photos), I have been in the 7-9 range for days.  Occasionally hitting a 6, and if I hit a 5 I was pretty doped up!   I was so happy.  I thought, “Yes, this is going to work!”  Then I thought, “Well, this means I definitely have high pressure.”  You see, if I didn’t have high CSF (cerebrospinal fluid pressure) this drug would have made me feel much worse, so I took a great risk taking it, but I was willing to try ANYTHING!

I decided, to try a little experiment and lower my head a bit, I woke up at about 9:30am, and my headache had climbed to about a 6, I should have taken a pain pill, but didn’t want to do that on an empty stomach.  Unfortunately, I didn’t trust myself to go downstairs to get anything, and Stuart was too exhausted to get up yet.  So I went back to sleep.  When we woke again, my head was back to an 8.  Stuart made me some breakfast.  I ate, took my morning medications.  Including the Diamox and the little bit of Topamax.  Shortly afterward the world started to spin.  Luckily, if I stayed very still on my right side it was almost still.  So I dozed.  But if I tried to move it went crazy again!  (and oh how I had to go to the bathroom! Isn’t that always the way?)  This last over 2 hours.

My headache has been around 7 -8 most of the day unless I took a Maxalt or Hydrocodone, then it would ease to a 4 or 5.  But I feel much more dopey when I take those than I used to.  I wonder if they Diamox makes them more potent, or if it’s just because I’m sleep deprived.  Unfortunately, often when I try to sleep I start to spin.  That just happened a little while ago.  I gave up and decided to update all of you.

All and all, I take last night as a good sign.  Perhaps we can get this medication worked out and I can at least get things under control enough so I can get out of bed!  It’s horrible.  I have 2 people living in my house and I haven’t seen them in days.  I’m still lonely.  It’s sad really.  But it’s hard.  People don’t want to intrude when I’m like this.  I admit I don’t like for people to see me when I’m having a vertigo attack, or in horrible pain…but I am lonely.  Thankfully, I do have Stuart, and he tries so hard to keep me entertained.  : )

I’m not crazy about being on Diamox.  The side effects aren’t fun.  Well, two in particular.  One is this tingling sensation.  Kind of like when your hand or foot starts to go to sleep, but not quite..and it’s just an icky feeling.  The other is brain fog.  Often very intense brain fog.  So we’ll have to see if I can deal with that.

I will say, either the Topamax or the Diamox  (these two drugs are in the same class) is already reducing my appetite.  Thank goodness, I needed that!  I weighed in at the doctor’s on Wednesday at 200.9 lbs.  I NEVER thought I’d ever see 200lbs.  I’m only 5′ 4 1/2″.  I do realize it was the day before I started my period, and I was fully clothed in jeans and tennis shoes, but that should only take away about 5lbs.  I was happy today to feel like my appetite was much more back to normal.  Ever since I started having trouble with this fructose intolerance I’ve been so hungry.  Having cravings I just couldn’t satisfy.  Top that off with not being able to exercise.  I gained about 55 lbs.  Now it’s time to take that off!

Anyone out there want a weight loss buddy?  As soon as I can do any exercise at all I will be easing into something slowly.  Stuart surprised me, he’s looking into getting a therapeutic pool.  I don’t think we can afford it.  But it sure would be nice.  First things first, I need to get this vertigo under control first.  Can’t be getting in water when I can’t see straight.  : )

OK, as you can tell, I am sleep deprived and just rambling.

with no photos…my posts are a bit boring huh?

I leave you with this…..

Draw the Shades Today
Migraine Pain Robs One of light
New Meds Can Give Hope

22 days…

On By WendyIn Chronic Illness13 Comments

Trying desperately to hold on to the computer and write these words.  Concentrating up close sometimes helps…today I’m not so sure.

Here’s a Haiku that probably breaks all the rules, but bear with me today….it’s been a really rough few weeks.  Last night and this morning being the worst.

Migraines,Vertigo – Bad!
Weeks full of pain and spinning,
why can’t someone help?

My symptoms have changed.  Doctors look more confused when they look at me.  That’s disconcerting.

As you know I saw Dr. Gray, my pressure was a little over 21.  That was what my closing pressure was the last time when I felt my best…confusing.  She mentioned that pressure doesn’t take into account volume and my volume was higher because of the excess fluid from the surgery..so does that mean my pressure was high or low?  She’s thinking high.  I wrote about this earlier, I think, so I won’t go into it again.  But I do feel like I’ve kind of stumped her….maybe just a little.  I do wish I was one of those patients who’s tests were more cut and dry.  Here, let’s take this blood test…oh you have this, take this and feel all better.  Or at least, you have this, here’s how we’ll treat it, but I’m sorry it won’t go away.  I can handle that.  But this.  I’m having troubles with.

I really understand now how my friends feel who have no diagnosis.  Like Allison and Maureen who know they have some vestibular issues but have no idea what it is.  I just keep thinking…why can’t they fix this?

Yes, I have Meniere’s we all know that.  But these migraines are much worse than they used to be, and the vertigo is very un-Meniere’s like.  I keep having positional vertigo.  That doesn’t go along with Meniere’s.  (and why did I have the 5 months of no symptoms last year?)

The other night I had vertigo all night long, but I was alright as long as I lied on my right side. At first I didn’t realize this, I happened to be on my right side, everything was calm and I went to turn over, I got half way there and screamed.  I actually screamed.  I scared myself, I had no idea the scream was coming out of my mouth.  So back to the right side I went, but that is the hip that is in constant pain so that was not the most comfortable position to be in, however, if I moved, I started spinning.  Finally, I fell asleep, and you can guess what happened, I turned over in my sleep and woke up spinning like crazy.  Ahhhh!  It was a long night.

I saw the neurologist who is a headache pain specialist on Wednesday.  She looks like a Pixie.  : )  She seems very intelligent and knowledgeable about my case, and migraines.  But she really didn’t look like she had knew what to add at this point since Dr. Gray had just seen me and added the Topamax we kind of needed to see if it will work first.  She said to continue the Topamax Dr. Gray prescribed but she wants me to ramp up slower until I hit 200mg.  So I went from 50 to 75mg Wednesday night.  Last night was one of the most painful nights I’ve ever had.  My headache pain was at a constant 8 or 9.  At one point it reached a 10 but I was too weak to ask Stuart to take me to the hospital.  I kept ice on my head, and kept drinking water.  I was so very thirsty.  I could not keep my eyes open.  It was a strange thing, I didn’t feel like I couldn’t’ stay awake, I felt like I couldn’t stay conscious.  I had horrible dreams, in which I would just sob and my head would pound.  I know the dreams were caused by my headaches, but they were so disturbing.  In one Sandy was bitten in half by Alligator, and was still alive and suffering.  See horrors!!

Today Stuart has called all 3 of my doctors.  If you are seeing 3 doctors, who do you call when things go so terribly wrong?  First he tried Dr. Atkins, but we didn’t get a direct line to her nurse so he had to leave a voicemail in the generic mail box for the whole practice…who knows when she will get that message.   He called Dr. Kaylie.  He said, he thinks I should get another LP (lumbar puncture).  oh joy.   He called Dr. Gray.  They had a long discussion the consensus is that I still have high pressure.  She wanted me to come in tonight but it was 4:30pm and she still has 2 patients so she didn’t think it would be wise, so she is talking about Monday.   However, she wants me to take some Diamox tonight.  She said that will tell us if this is high pressure or not.  I was in tears, my head pounding as Stuart was on the phone…I yelled, “Fine whatever, just make it stop!!”

Of course, now my fear is, it will just make it worse.

I won’t deny it.  I’m scared.

I’ve had vertigo every day for 22 days.  No not constant, but at some point during the day for varying lengths of time I’ve had vertigo every day.  The severe disequilibrium is not as debilitating, but it’s not picnic.  And I think I’ve talked enough about the headaches.

I Want It Now!…but I’m still Stinky…

On By WendyIn Chronic Illness12 Comments

I Hate it when I can’t do something for myself!!

I HATE it when I want something…like food…and I’m brushed off…oh I’ll get it in a little bit.  Then, he offers,  “how about a (insert something tasteless that I’ve had every day for a week here)?”  “NO!  I’d like some REAL FOOD.” (sometimes I’ll even suggest something…”ummm, that’s so hard, and I’m tired.”  Damn…the I’m Tired Card.  That makes me feel guilty EVERY TIME.

But today,  something tasty was discussed, pizza, or Chinese….Chris decides he’s going to make Chicken soup….hummmm…I – do – not -want –  Chicken soup.  I’ve had that a couple of times this week….  “Oh it’s just to make sure the chicken won’t go bad, we will be getting something else…something good.”  “OK.”, I said dubiously.  “What do you want?”  I said to ask Penelope, I’m good with either the Chinese or pizza….secretly I really wanted the rolls from Pei Wei…but pizza is good too. (Really, I didn’t want to be difficult.)

He comes back….much later…how about soup tonight and we do the other tomorrow.  Fine. {grumble, grumble}  (Now he remembers this whole scenario much differently than I do….but we know I’m right.  He swears I never said I didn’t want soup tonight….uumph!)

I got all flustered with him…I’m hungry…now, dangit…and I don’t remember what happened next or why but I told him to please leave.  I did some other stuff on the computer and…an hour later…I finally called out for him…”OK it has been 2 hours since I said I was hungry is there a reason I’m not eating?”

I Want It NOW! (image by horrificbeauty - Veruca Salt - click to link to artist site)

(yes, you can see the red flames coming out of my eyes at this point….I think you may have been able to see horns and a tail.)  I get sicker and dizzier when I’m hungry…and I’m already pissed that I have to ask for food like a puppy!

I hear…”the soup isn’t quite ready yet”…”Don’t care, it’s been 2 hours…I want something to eat NOW!” “I can find you something.” But he just sat there looking at me… (I actually shooed him away like, well, be off with you fetch me some food damn it! Why are you still here? …I vaguely remember him saying something about being a slave boy, but I was way past hearing reality at this point.  Really?  I did this?  Why does this man put up with me?)

He brought me grapes.  I almost threw them at him….but I took a deep breath and ate the 6 grapes I’m allowed to eat in a day…and waited.  then he brought up some chicken with some mayo/mustard type dressing on it and called it chicken salad….I looked and didn’t comment on what he brought only that it was only about 3 bite fulls.  “But the soup will be ready in 15 mins!”  I thought…that better be some damn good soup!

Luckily it was.  Oh, yes, it was some of the best Chicken Noodle Soup I’ve ever eaten.

Was it what I wanted tonight?  No.  Was it satisfying…mostly.  Would anything else have been any more satisfying?  Sadly..I doubt it.

Then came the humbling, groveling, feeling extremely guilty time….Yes by ME!

Sometimes, it just gets to me (this time of the month much more than others, unfortunately).  I hate being dependent upon someone else for everything.  I HATE to have to ask someone to do something for me that I use to be able to easily do for myself.

Soon I had another problem.

I have been smelling vomit on and off all day.

I have not thrown up today, or yesterday even.  I did wake up last night very sick, feeling like I was going to vomit and I did gag a few times but I did not, I repeat I DID NOT throw up!!  So why do I keep smelling vomit?

I smelled my clothes…no, but I washed up at the sink and changed them any way.
My pillow case, no.

My sheets, no.

Finally this evening, I asked Stuart, do I smell like vomit?  He looked at me, “I can’t imagine why you would. Everything around you is clean.”  Still, I got him to smell me, and YES, I smelled like vomit!  EWWWWW!

OK, Bath time.  I was feeling better than I had been so it was time to brave the bath.

I ran the water, added some Epsom Salts for my aches and pains and got in….and got sick!  OH…the walls started to breathe.  I ran cold water over my wrist.  Please do not make me give up my bath.  I tried and tried…but no…Stuart was holding on to me and leaned over to let the water out.  I cried.  I looked up into his eyes with the biggest saddest eyes anyone has ever seen with tears rolling down my cheeks and said, “But I’m still Stinky.”  Then I burst into uncontrollable sobs.

"But I'm Still Stinky." (Vintage Big Sad Eyed Child painting - artist unknown)

My dear husband got in the tub and helped me up, dried me off, and got me out of the tub.  I sat on the toilet, and said, “of course, now I feel better.”  Without a word, Stuart soaped up a wash cloth and gave me a sponge bath while I sat there.  Very gently, with lemon scented soap.

He helped me back to bed.  I looked at him, and said, “I’m not stinky any more.”  He just smiled and said, “No more Stinky.”

**Please note:  I started to post this last night.  I was entering the photos when suddenly I went into a full spin.  Stuart was kind enough to save the draft so I could put it out today.  This is how life has been for the past 16 days.  I may have been the bitch from hell yesterday, but I promise I’m not like that often, and he says it gives him a little bit of insight into what I’m dealing with…as long as it doesn’t happen every day.  : )  I must say, having 16 days of severe symptoms and now PMS on top of it all, I was a volcano ready to blow.

Thank you to my darling husband for not throttling me.  And by the way….that soup was damn good!!

I just haven’t felt like it.

On By WendyIn Chronic Illness11 Comments

Normally when I’m not feeling great, I turn to my blog.  When I’m happy and want to share, I turn to my blog.  When I’m mad, I turn to my blog.  Well, you get the picture.

Lately, I just haven’t felt like it.

I’ve thought of much to say, but it all sounds like a big jumble to me.  No real coherent thought.  I’ve been happy, sad, mad, confused, in pain, sick as a friggin’ dog (where did that saying come from anyway?  Or Weak as cat pee?  that person evidently never smelled cat pee!)…see what I mean…all over the place.

I do feel I owe an update.  Today is day 12 of feeling like crap.  I’ve decided to name my Slosh Head – Alvida – after a famous female pirate.  My head feels like I’m living on a very rocky boat, I’m sure the first Alvida (often spelled Alvilda) spent many days on a rocky boat, hence the namesake.

Alvida cannot seem to get her “sea” (or in our case, very rocky land) legs.  We wooble..but unlike the Weebles we can fall down.

I had a-n-o-t-h-e-r lumbar puncture (LP) on Monday.  This time it actually appears they caught the high pressure before I had a blow out!  It was the highest it’s ever been..then Dr. Gray said something that confused me (of course that’s pretty easy to do right now), she said, that the pressure doesn’t take into account volume, and my volume should be higher right now because of the excess fluid I still have after the surgery.  So, can we trust this LP at all?  She did a little testing.  She added in 3cc’s of CSF (cerebrospinal fluid pressure), and I started to get a headache.  She started to take some out, and I started to feel better, then she took out more and I felt weird.  She took out 10cc’s all together.  (I think that includes the 3cc’s she added….again, confusion).

"Hope" for Dr. Gray - Thank you for giving so many people hope.

I made Dr. Gray a piece of art.  I’d been working on it for a while, if you’ve been on my blog Create To Heal you have seen it in progress.  I still needed to color quite a bit of it, but I finished it just in time.  She loved it!  Just gushed.  Said she was going to frame it and just went on and on.  I’m glad it made her happy.  She also said, we could come by and see her anytime, I didn’t have to be getting a hole in my back.  LOL.

While in recovery I started to feel MUCH better.  I could turn my head without getting sick, I was happy.  Then I got up to leave.  Ugh…not as good.  After we got home and I ate dinner the world began to move again…Dang-it!  But Dr. Gray said it would take some time for things to level out.  She put me on a small dose of Topamax, to see if we can keep the pressure lower, we will up the dose as needed.  Hopefully, we’ll figure this out and I’ll be able to move around soon with out triggering a full blown vertigo attack.  Not feeling like I’m on a boat would be nice, but not spinning some every single day would be a miracle right now.  12 Days!  TWELVE DAYS!  But I can handle it.  I know I can.  If it ends up that this is the way it will be I’ll figure out a way.  Perhaps I’ll need to wear a neck brace so I won’t move my head to fast?  We’ll figure out a way that I can deal with it some how, some way.  Wow, I just really surprised myself!  I haven’t been feeling the most optimistic lately.

After the coldest night I think we’ve had in a very long time (it was in the 20’s F here), we went to the library the next day.   Guess what we saw out front?

This photo was taken February 12th!

That’s all for now.

Alvida is telling me that she is not going to allow any more!

Here’s to getting my sea  legs…I hope.