Tag: Headaches

It’s been a very rough week.

On By WendyIn Chronic Illness, Meniere's Disease10 Comments

It has been a very hard week.  I won’t go into details as it concerns people in my family, and I won’t talk about my family on my blog again.  I’ve been contemplating all week simply closing my blog and disappearing, or making it private.  But that’s stress talking, I’ve found so much support here and I want to think I’ve given a lot of support and information here too.  Plus I need a place to go and just get it out.  Even when I can’t talk about all of it.  Let’s just say, it’s settled for now….maybe.

Photo by Vincent Morrison – Manipulated by Wendy Holcombe
If photos could show feelings…

On the 15th, I got hit with a huge stessor!   I was under extreme stress and confusion for hours.  Finally, things were calming down.  I was relaxing in bed, tying to breathe in the ill feelings I felt towards me, and breathe out happiness and goodness to all.  I decided to have a little pineapple Greek yogurt, with a banana and nuts for desert.  It is delicious.  Well, what I got to eat of it.  Right when Stuart brought me my decadence, I had that Wonky feeling in my head…so I took my pills and hoped it was just a blip on the radar.  (Yes I know, how could I think of eating if I was feeling Wonky, but I’ve been having a lot of Wonky spells that just turn into nothing lately.) Unfortunately, before I was even finished with my treat the world was in full spin!  This was one of the longest attacks I’ve ever had….and one of the strangest.  It was Meniere’s, not vertigo caused by a migraine.  I went through all the stages…and all the grossness. (some how while throwing up I bashed my elbow on something, and it has had a knot on it since then.  It’s getting better, but I was afraid I had broken it the next day.)  Again, all the throwing up and losing all bodily functions.  Not being able to lift my head, except to put it in a bucket.  (I even threw up on our brand new carpet….not much, thank goodness, but Yuck!)

So the vertigo kept changing speeds, it would be wild, so fast I couldn’t recognize the things spinning by, then it would slow down to the point I thought it was going to stop any second….I even dozed off a few times, just to be jerked awake by vicious spinning again!  This went on for over 16 hours.  Luckily I didn’t throw up the whole time, I did keep heaving though.  Even before I threw up the first time, I would have the worst muscle spasms and just heave, like I had dry heaves, but nothing had started yet.  This often happens to me when I have an attack, at he beginning at least, I can’t figure out why.  Why does it have to hurt so bad??

Even after the spinning stopped for the next day I kept feeling like they would start back up, I couldn’t walk straight.  It was a very rough 2 days.

On Friday I had an appointment with my headache pain specialist (neurologist).  I was supposed to get Botox shots for my migraines.  Many people have had good results from this procedure.  I was a bit nervous, they do 31 shots in your head and neck/shoulder area.  Alas, I did not get it done.  Once again our insurance did not send a pre-approval, they didn’t deny it, but they didn’t approve it either.  Just like with the Cochlear Implant.  What a pain in the butt that was.  Luckily, they did pay for most of it.  They didn’t cover a procedure that cost about $500, testing the device after they hooked it up to me to make sure everything worked right.  Can you believe?  What if they hadn’t tested it, and later found out part of it wasn’t working?  I’d have to go through another surgery to replace it.  How bizarre.  Stuart called the insurance company on Monday, I have been approved for the procedure, it just seems no one knew it.  So now I have to get another appointment with this doctor…..hope it’s soon.

Sunday I had another scare. but not with vertigo.  Really I wasn’t scared, it’s happened before, and I’ve been checked out, still it’s uncomfortable and yeah, it’s a bit scary.  I had heart palpitations.  I figured out why, but it lasted a long time.  I wasn’t as careful Sunday about what I ate or drank.  I do not drink caffeine very often, and if I do, it’s just a little bit.  I also don’t eat much sugar.  Well…I wasn’t so bright on Sunday.  We were out and I had Mandarin Orange Green Tea, not thinking that Green Tea has caffeine.  That would have been fine, but later in the day we were at a store and I started feeling funny, and very thirsty, we couldn’t find anything that didn’t have either caffeine or sugar.  I decided to take the caffeine since I wasn’t sure if the sugared drinks had fructose.  I only drank about half of the soda.  After dinner I decided to have some ice cream we bought, it is Fat Free, and I was thinking Sugar Free too.  Not bright.  I only had about half a cup, but it was enough.  I started feeling strange.  I thought my blood sugar had dropped, so I ate some protein. But it didn’t work.  I was sitting on the couch watching TV with my hubby and I felt like my heart was going to beat out of my chest.  The doctor told me to massage one side of my neck, and it should help, she also said to put something cold on my wrist.  Well I did both, for a long time.  This lasted longer than I was comfortable with.  Finally, things slowed down….and all was alright.

I hate how much I have to watch everything I put in my mouth.  It would be difficult enough if that was all I had to deal with, but dealing with all my food issues and my other health issues is hard!  I’m dealing with it, and I’m lucky I can eat as much as I can…right?  I just need to be more diligent.

 

Well that’s all for this past week.

I promise my next post will be on a happier note.

What to say, when you don’t feel like talking?

On By WendyIn Chronic Illness13 Comments
Depression by ninykinin via DeviantArt.com

I’m sorry to my followers, my friends, that I have not been around much.  I am a bit overwhelmed by so much that has been going on that I haven’t told you about, and I’ve been sucked into a depressive state.  I keep trying to pull out of it, I even have a new medication, but I’m still just blah.  I wake up in the morning, and often feel awful for the first hour or two, it takes me a while to feel like a real person, then when I actually feel alright, I think what reason do I have to get out of bed?

I don’t find pleasure in the things I used to be so passionate about, like art, cooking, blogging….ect.  I do still find pleasure in reading, perhaps it is an escape?  I also still find pleasure with my husband, just being next to him makes me feel better.

I will be seeing my psych. tomorrow, I’ll discuss this with him, and we’ll see if I should increase the antidepressant I’m on, or try something else.   I’m sure he can help pull me out of this.

If you have been reading my blog for a while, you know that I’m normally very positive.  This turn of emotions has hit me like a wall, I don’t feel like myself.  I need to get my positive outlook back.

The ironic thing about this, I’m actually much better.  I have the weird feelings when I first wake up, but I think that’s because I’ve been horizontal for so long that my cerebrospinal fluid raises a bit, and I have to sit up for a while, and take my medicine before I feel better.

I’m still having migraines, but they aren’t as intense.  I’m still having Migraine Associated Vertigo (MAV), but not as often, and when I do it doesn’t last as long.  Maybe I’m just getting the medication in faster, all I know is it’s better.  I’m still having chronic migraines though, yes they are better, but they still knock me out of commission for a while, so my doctor is starting a new treatment plan.  We want to get it where I’m having much fewer migraines, not just less intense.

No Meniere’s vertigo!

My surgery has FINALLY been scheduled!  July 19th, I will receive my bionic ear!  (my implant is from Advanced Bionics…so I can literally say I will have a bionic ear!)  Two weeks after surgery they will turn on the cochlear implant.  (I wrote a post telling all about the processors I chose, but that’s the one WordPress deleted half of, so I need to finish it again…I will try to do that soon, so you can see what will be hooked to the side of my head.  I’m sure you are all eager to see that!  : )  Just wait until you see it actually on my head!

Other things that have been happening:  We got new carpet.  We replaced our worn out couch.  We had our mattress replaced under warranty…it wouldn’t bounce back.   So the house is full of chemical smells, and I’m so sick!  I keep trying to stay in rooms with less chemical smells, but I’m still coughing so much my throat is sore, my head hurts, I’m so tired all the time….ect.  I’ll be so happy when I can breathe in my own house again!

Tell me is it normal to feel down when you start feeling better?  Yes, I’m feeling better but not to the point that I can do everything I want.  Since I feel better, I’ve begun to resent that I can’t drive, I can’t have that independence.  I hate that Stuart has to be with me for me to leave the house.  I know with the uncertainty of vertigo it’s even dangerous for me to walk around the block by my self.  I resent that I have to be careful of all the food that I eat.  We took a little trip this weekend, and it was so very hard to find food that I could eat.  I felt horrible, every time we wanted to eat it was such an ordeal.  It’s not so bad locally, we know places that are safe, but I didn’t think about not being able to find safe food on the road.   We tried so hard to make sure everything I ate was safe for me, but still I got sick.  On the way home we had to stop numerous times so I could run to the bathroom.  I was so embarrassed to have that happen in a public restroom.  eww.

I used to find it a challenge and a pleasure to cook even with my restrictions.  I thought it was interesting to figure out how to change a recipe so I could eat it.  Now I resent that I can’t eat some things.  That I can’t cook whatever I want.  I don’t like this feeling.

Oh, I almost forgot, I had a birthday.  July 2nd!  My husband is a dear man, he celebrated my birthday for 4 days, and I’m getting my main present today!  So, still celebrating… he’s done something sweet for me every day since Friday!  He really made up for the one time he forgot my birthday!  haha  Funny thing, I thought I was turning 50 this year.  Stuart and I were walking along one day last month and mentioned my birthday, I said that this one was a big one, he asked why 49 was big for me, I said, “No, I’ll be 50!”  He looked at me, and said “No Wendy you will just be 49”.  I was sure I was going to be 50!  He said, “What year is it?”  I said, 2012….Ooooh!  I guess I’ll be 50 next year.”  How silly was that?  Here I’d been telling people for months that I was turning 50 this year!  hahaha

Well, I think that’s all I can purge out of myself at the moment.

I will try my best to blog more often, I really want to become passionate about it again.  I’ve missed my friends.

Wonky, Sloshy Head

On By WendyIn Chronic Illness, Cochlear Implant, Meniere's Disease11 Comments
Image from deviantArt. “loose” by pehdtsckjmba

If you have Meniere’s, I know you know what this title means.  For the past few days, (actually I think it’s only been two, but it feels like a week!), I’ve had the wonky, slosh head feeling.  I dare not move my head too fast or I’ll fall down, really, I did this yesterday!  I haven’t felt like this in a few months, I wonder what has started it now?

Could it be….

  1. Hormonal Changes?  It’s that week, but it hasn’t started yet.
  2. Missing one of my meds for a day and a half?  (that’s 3 doses)  This is what Stuart thinks it is, but I’m wondering if part of that isn’t just him feeling guilty because he forgot to go and pick it up.   (it was Buspar for anxiety and panic attacks – these started in January, I haven’t felt more anxious the past couple of days, just wonky!)
  3. The weather?  We have had some big weather changes almost every day.  We’ll have beautiful clear skies, with a lot of heat…and then we’ll have a lot of rain all of a sudden!  But this has been happening for weeks, so why bother me now?  (it has been increasing my headaches, but I haven’t noticed the disequilibrium before.)
  4. It’s just that time?  We all know Meniere’s is NOT predictable.  So maybe this is just the monster saying hello.

I’m still so grateful that I haven’t felt like this in a while, actually I’m not sure the last time.  Not much since the surgery in December.  I have to say, I’m thrilled with the results of that surgery.  I have only had one mini vertigo attack caused by Meniere’s since my recovery.  Yay!  The Endolymphatic Sac Surgery was a big success for me.

(I’m still waiting on our insurance company to send the right type of letter to Duke, so I can get my Cochlear Implant surgery scheduled.  They have been so evasive about this, how hard is it to say that this is covered under our plan as of this date with an in-network doctor.  As long as our plan doesn’t change everything should be the same.  NO, they send a letter saying they can’t give a predetermination, because the plan may be canceled or changed, the doctor may not be in-network…ect.   They never even say if it’s covered by our plan at the present time!  What a pain!  So I won’t be getting my CI activated before my birthday….I’m so disappointed.)

I promise to write a post about this whole journey, and show which processors I chose, as soon as I feel a bit less wonky.

 

Sleeping

On By WendyIn Chronic Illness9 Comments

There is so much I wanted to accomplish during my little hiatus.  Paying more attention to the spiritual side of me, painting, working on some things in the house….

What have I been doing?  Sleeping.  A lot.

First I’ve been having much more Migraine Associated Vertigo (MAV), one day I had 2 attacks in one day!  That’s never happened before.  On those days I understand why I’m so whipped out, but there are many days where nothing has happened, but I feel like I can’t keep my eyes open.  I’m wondering if one of my medications is bothering me, but nothing has really changed recently.  I was taken off one drug, but nothing was added when this started.

On the 12th I had the Pneumovax -23 vaccine.  It’s a vaccine for 23 different strains of pneumonia.  Including one that causes meningitis.  This vaccine is required for anyone who is getting a cochlear implant.

Unfortunately, I’m one of the people who had side effects to the vaccine.  Including extreme soreness of the injection site, and my whole arm, fever, swelling of injection site, redness of injection site, diarrhea, and extreme fatigue.  Normally, all of the side effects subside within about 5 days, but some people feel some of them (especially the fatigue and malaise for 14 days or more.)  I think I’m in the more category.

This has been an experience.  Most of the symptoms did disappear after the first few days.  The injection site is still a little pink and warm to the touch, but I can lift my arm, not fever, the extremely gross diarrhea didn’t last long, I’m grateful to say.  (too much information following) – One day I was having loose stools, nothing serious, but I felt so exhausted, so I decided to take a nap.  While I was asleep the diarrhea struck, it didn’t even wake me up!  What a mess.  That was a scary thing indeed, for a long time I was afraid to go to sleep, but I was so tired.  We decided to put a pad under me on the bed so I knew if something happened I wouldn’t ruin the bed, then I was finally able to go to sleep.  But I had 3 times where I had to RUSH to the bathroom before sleep finally came…and I’m happy to say the extreme diarrhea stopped.

Still I’m tired.  It’s been 19 days.  I don’t think this is just the vaccination.  I think it’s a combination of MAV (yes I’m having it almost daily, luckily this vertigo isn’t as intense as my vertigo from the Meniere’s.  It is easier to get through.), some medication, and probably just some of the stress from everything.   Plus, maybe some of the medication.

I am putting together a post about my journey on my way to getting a Cochlear Implant (CI), mostly it’s a lot of waiting.  Next week I tell them which processor I’ve chosen, and I find out where we are with the insurance.  I’m really hoping this will happen soon.  I’d like to have it turned on by my birthday…what a present that would be!

In the next post, I’ll explain more about what is going to happen, which processor I’ve chose, and a bit more about the process I had to go through to get qualified for the CI.

Until then, I think I’ll take a nap.  After all I only slept 12 hours last night.  : )

Word Cloud – #HAWMC 30

On By WendyIn Chronic Illness2 Comments

Today’s Prompt:  Word Cloud. Make a word cloud or tree with a list of words that come to mind when you think about your blog, health, or interests. Use a thesaurus to make the branches of your “tree” extend further. http://www.wordle.net/

I did a little bit of a different take on this prompt.  I hope you like it.

Word Cloud Collage by W. Holcombe 2012, April

Pinboard – #HAWMC Day 16

On By WendyIn Chronic Illness5 Comments

Today’s Prompt: Pinboard. Create a pinterest board for your health focus. Pin 3 things. What did you
pin? Share the images in a post and explain why you chose them.

I chose to pin a few more than 3 things, and probably could have done more.  However, I only pinned photos and artwork I created.  I chose these images because I felt they were closer to me and expressed what I wanted to say many times.

Here are the photo’s I shared on my Pinterest Board, titled, My Illnesses….pluses and minuses.

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10 Things I could not live without – #HAWMC Day 13

On By WendyIn Chronic Illness4 Comments

This has always been a bad list for me.

Do I assume my necessities are taken care of, like food, water, shelter…ect?  Do I assume I have my husband and my pets?  Because if I need all of that, then there goes the 10 things right there!

I was once asked, “You were stranded on a desert island, you were allowed to take all your necessities, you forgot one important item, what would you freak out about?”   My first thought….”I hope it wasn’t my toothbrush!”   Strange thing, if I’m stuck and could only brush or floss, I’d floss.  so what was I thinking?  Take care of those gums!  Silly girl!  I guess I should have said, drinkable water, or something smart like that, but I kind of assume you could find that somewhere.  Am I naive?

So for this question, I’m going to assume I have everything that is necessary for life….I mean to sustain life.  And all my medications and such, including my hearing aid, and glasses. But only list those things I feel I couldn’t live without, even though technically I could.  (and I’m not including my loved ones, or my dental hygiene products, we know how I feel about that, I’m going to assume those are all included, this wouldn’t be much fun if all you read was a bunch of list about, oh I’d take my husband, my cat, my son……)….So let’s have more fun than that.  Yes I think I’ll be listing more, what semi-luxuries could I not live without!    (Please Note!  The Main thing in my life I could not LIVE without is my HUSBAND!  But anyone who knows anything about me, knows that!!)

In no particular order:

massage - photo image by http://www.laurawardmassage.com/
  • I said no particular order…but this one is NUMBER ONE!!   Massages from Kelly!  She has literally save me in many ways!  I honestly believe I would have had hip surgery again if it wasn’t for her, and I think my headaches, and neck pain would be much, much worse.  When we moved to Durham, I had to give up a wonderful massage therapist I was seeing because the drive was just too hard on me.  I went for a long time with no massages.  Then I decided to surprise my husband with a massage as a thank you gift for the amazing things he does for me.  We randomly found this place and randomly found Kelly.  She has researched my conditions, has worked with me, and come when I’ve needed.  She has gone way beyond what is expected of a massage therapist, and their prices are very reasonable.  I could not live without Kelly.
  • Hot Baths – often with Epsom Salts.
  • Ice Packs – for those really bad headaches
  • My emergency pack for when I have a Meniere’s Vertigo attack.- (filled with bottles of water, wash cloths, plastic bags, emergency meds, a card explaining what is happening….)
  • My cell phone for emergencies. – (we must be in a place where I have reception, and I can charge my phone, and I have the charger…no loop holes here OK?) I can’t talk on the phone any longer, but if I need help, it has an emergency button, or I can push one button and call my husband.
  • My computer, and a way to power it and hook it up to a network, and anything it needs with high-speed internet. (yes, I’m being thorough there, I’ve seen too many movies where people make a wish like, I want a computer, then have no way to run it.) – I must have access to the internet.  all my friends are in my computer.  : )
  • Monkey, Monkey, Monkey – or just Monkey to his friends.  Yes I have a stuffed animal who calms me when the Intracranial Hypertension or Meniere’s or pain from any of my chronic conditions – migraines, pelvic pain, GI issues….ect….   When any of this gets too much. Monkey is there to dry my tears to hold my head. to be a neck pillow, to just be my Monkey.
  • Peppermint Lotion. – OK, yes we are getting in to my luxuries now.  At night my hands and feet get very hot.  So I use peppermint lotion to cool them off, it helps me go to sleep.
  • Burt’s Bees Lip Balm….or possibly a different lip balm that has peppermint, I don’t really like that Burt’s Bees sold out to Clorox…ewww, but they are still made here in Durham, but they aren’t guaranteed gluten free any longer. However, I had a stock pile, so I think mine are still from the old manufacturing practices….anyone know of a good peppermint lip balm that is all natural and gluten free?  Oh but back to why this is a necessity…..I use it every night before I sleep, my lips are hot and dry, and I cannot fall asleep with them feeling like that, I just can’t…so I must have a peppermint lip balm.
  • Vick’s Mentholatum Vapor Rub – oh, yes I know this is an odd one.  But again, in my go to sleep routine.  I have a hard time with post nasal drip.  I will start coughing in my sleep, and making little hacking noises.  If I put a little of this under my nose, it usually takes care of it.  It opens my nasal passages and no more drip.  If I still have it, I take a Benedryl, and it’s all gone. But it’s wonderful that this makes it so I don’t have to take another pill a lot of the time.

You know I thought I’d have trouble with 10….but I could go on….however, I think I’d be going into the territory I said I wouldn’t.

Oh NO!  I didn’t mention any of my art supplies.  I could go NO WHERE without a drawing pad and pens!!! NO WHERE!!!  What to leave off????   Or do I assume that were in with the necessities of life?  They would be for me you know?

Now that will take some serious thought.

Taking Control…even a little bit.

On By WendyIn Chronic Illness9 Comments
I did not do this piece of art work! However I really admire the piece and thought it was perfect for this piece. Please check out the artist other works.
"Taking Control" by http://katelynalainstudio.com

So…Yesterday I was having another icky headache day.

I hadn’t been able to hear well for days.  The day before I had vertigo for hours.  Not bad, throw up for hours vertigo, just a slow spin that made me nauseous and was most annoying, but was better if I focused up close.  I could not find a position I was not having vertigo, I also had the other things that often go along with my Meniere’s attacks.  Diarrhea, and those wonderful hot moments, and the complete exhaustion.  So I’m thinking possibly it was a Meniere’s attack, not Intracranial Hypertension.  Especially after what I realized next:

I was lying in bed and realized I can hear today.  Not tinny sounds, no strange warp. just hearing! Clear sounds!  I decided to take control! (and I have been feeling completely out of control of everything in my life, so this was a major thing!)  I decided to dope myself up.  I hate to take too much migraine medication or pain medication because I do not want to get dependent on it, or have rebound headaches.  But yesterday, I decided to take a rescue medication, and a pain pill, and carried a second pain pill with me in case I needed it.  I also carried emergency Meniere’s med’s so I was prepared, to venture outside.

Yes, I wanted to go outside to possibly hear a bird.  After all, who knows how long this hearing will last?  Unfortunately, it was the wrong time of day to really hear a bird. Some people were just starting to come home from work and things like that.  It was such a pretty day.  I sat on the porch, I’d told Stuart I’d bring my phone outside with me in case I needed him, he said “I’ll do better than that”  and out he comes with me.  I was a bit sad, all I heard were cars, and sirens.  Human made sounds.  Stuart said, “I think I may have heard a bird.”  BIG MISTAKE!  I said, in a much nicer tone than I was thinking…because I was feeling kind of raw about my hearing…”Ummm. Please don’t do that.”  “What?”  “Don’t point out to me things you can hear that I can’t.  That’s not helping the moment, do you understand that?”  He said he did, and we went on to do some other things.  I will talk about…but may I say, he later did point out another sound he heard.  I know at that time it wasn’t, ‘I know you are trying to hear this thing so I’ll point it out so you can listen and maybe hear it.  It was more…Oh, I’m excited I’m hearing this, I grew up in a place where we didn’t hear sounds like this.  So I over looked it. And I did hear it, but if I hadn’t, it would have hurt.  Even if I have excepted it, there are little things that I’m feeling sad about.  Just not knowing.  Will I ever hear you again?

However, as I said, we did a little more.  Stuart planned to sit out on the porch and work while I enjoyed the day.  I asked if he could hand me my pots of herbs.  I have 12 -14 pots.  I can’t remember how many exactly.  I know I grew 11 different herbs last year, but I had a couple duplicates, and one died.  So I’m thinking somewhere between 12 and 14.  He brought them to me one by one.  Many had started to come back.  Some I didn’t think were annuals.  I guess we had such a mild winter they just didn’t die all the way.  The Bee Balm (not technically an herb, but I grow it in with them, the bees like it.) is already 6 inches high and very, very full.  It never bloomed last year, I think we’ll see some flowers this year.  The mints are doing well.  I cleaned out the dead branches in their pots and aerated the roots.  So more peppermint, spearmint, and lemon balm (yes in the mint family) this year.  The Lemon Balm has also taken off.  There is a full pot of it already!  YAY!  It keeps the mosquitoes and other bugs at bay.  I need to make sure it’s beside my Basil so the Japanese Beetles will leave it alone.  I really hate those things.  They aren’t very smart though.  If they do find the basil, I just move it, and it takes them a while before they find it again, so I move it again.  Stupid bugs, but they can strip a plant….oh they don’t like oregano either.  so I put the Basil between the Lemon Balm and Oregano. Great deterrents!   The Thyme came back!  And of course the Rosemary never left. The lavender kind of went all gray and looked dead, now it’s looking like it’s turning green.  I think I should have cut it back.  I had a lavender plant before that stayed green all winter, this must be a different variety.  So I have a few things to replace…like the Basil, and marjoram, think we may try Chocolate Mint this year, just because it sounds so decadent, not sure what else I may put in.

I may not be able to keep a garden, but my herb garden.  I just have to do it.  I have to feel that much in control.  Just a little.  (and please oh please, let me be able to start cooking again soon!!)

Stuart did take a break from working, and cleaned out the little flower bed, got the day lilies ready to bloom, and got the bed ready to add some compost.  So he will add a little compost and some flower seeds this weekend, and we will have our little wild flower garden surrounding our herb garden pots.  Minimal fuss, and muss, it just has to be watered.  (and I’m thinking about paying the next door neighbors boys to do it when we are having a rough time.  They should be 12 -14 now, I think they can be responsible, and she’d like it.  One is her nephew/ adopted son, and one is her foster son.  A great family.  She was one of our sponsors when we were going to foster.)

OH….I did hear some insects making those noises they do.  And a very big BUMBLE BEE thought I was very interesting, and buzzed me!  REALLY!  Oh Goodness Gracious, I had a Bumble Bee talk to me.  I have an upcoming post about it.

So control.  I’m working on feeling like I have a little bit more back.

I tried to start dinner today.  I was feeling pretty good, and almost fell out in the kitchen.  This bitch is weak!  So how much is the head crap…granted I did start feeling like I had a very SMOOSHY HEAD, but how much is me just being so weak? We went by the grocery store on the way home from the doctor today, we left and Stuart asked if I could carry these two light bags, no problem…after a very short distance.  BIG PROBLEM.  I was soon swearing at Stuart, “I don’t know why you can’t ever roll the ($*%ing cart out to the car anyway!”  He keeps telling me to give them to him.  NO, he had enough, and I had them.  I’m dying, the muscles in my shoulders are screaming.  Then I think, well if I have to lift these thing put them to use, and start using them as weights to tighten muscles I need tightening.

And now it is about 8 hours or so later, and I am so sore I can barely move.  From carrying LIGHT grocery bags, and cutting up a chicken!!  what has my body been reduced to?

But I am determined to take more control over more of my life.  I don’t like feeling like I’m not in control of anything!

Today I saw the headache pain specialist (neurologist specializing in headaches).  She is changing up a bunch of medications.  Taking me off 2, adding 1, and putting me on a round of steroids to see if we can’t knock this headache OUT, and give me a fresh start!    I’m feeling good about the changes. Unfortunately, it’s going to take a while to ramp off the meds I’m on, ramp up on the new meds, and get it all sorted out.

Dr. Gray wants to do another Lumbar Puncture.  I’ve decided not to go that route.  I’ve decided to wait and see what this medication does first.

A little Control.

it feels good.

My new friend Mary, will be proud of me.  (I know my many other friends will also be proud of me, but Mary and I were just talking about this yesterday.)

My Afternoon….

On By WendyIn Chronic Illness6 Comments

This whole brain thing is interesting.  One moment I’m doing pretty good, then, like today, I started feeling a bit woozy, not unusual.  I ask Stuart to help me move upstairs.  He got my computer and stuff said he’d be back to help me.  I thought, I’m not that bad yet, I can go upstairs.  So I start.  I get to the top of the stairs, and my head pounds…this seems to happen a lot, my pressure must raise when I climb stairs.  Then I walk a few steps and start to lose control over my legs.  I just kind of flop like a rag doll.  My head flops, my arms flop, my legs don’t want to listen to me….My body just doesn’t want to listen.  I think I almost killed Stuart, he did not expect to hold all of my weight all of a sudden, he expected to just guide me because I was staggering.  We got me to the bed, I decided I have to pee now.  Of course, I am headstrong, and I have more control over my head now, and little more control over the rest, and I knew if I laid down, I wouldn’t be getting back up.  So I’m determined with minimal help, I’m going to pee.  He holds me, “No. I DO IT!”  He lets go…I slide down…he grabs me, I grab for the sink….”I DO it!  OK….I inch my way there….and grab the wall and can’t pull my pants down.  Uhhhhh….*little bitty voice now*  can you help?  He does, and I pee.  Yay!!!   I kick my jeans off (we’d had an appointment earlier), we get me back to bed.  A little easier, my control is coming back, and get me into a t-shirt.  I lie down, and he says, I’m taking blahbla *yeah not hearing well* down stairs I’ll be back *at least that’s what I got*  OK.   So a little latter, I call out.  “You upstairs?”
He comes in.  I say in a very calm voice.  “I’m having vertigo, I thought you should know, just in case.”

So that was my afternoon.

Yes, it’s still my blog here….it has many personalities…or something. Plus update on symptoms, and Spring.

On By WendyIn Chronic Illness8 Comments

You may read my blog from your email, and haven’t even seen it….but if you have, you may have said…”she’s at it again!”

and yes I am….I just didn’t like it.  Too busy, and I didn’t like the page color.

So many things I can’t change on Word Press.

And I don’t have Photoshop right now, I’ve been trying to use Gimp…but I’m so lost with that program it were a real book I would have torn it to shreds by now.  Ugh!!!

This looks like me, trying to use Gimp.
(image source free clip art.)

I miss Photoshop, I need to buy it, but I need to buy a teacher or student version…I really can’t afford the off the rack price.  whew.  That’s like the difference between designer clothes and thrift store, for the same goods!  I just don’t get it!

So for now I wait.

Did you know on WordPress you have Pay to change the CSS on your blog?  You have to pay to change your font….yes thank you can get around that one by writing in Word then copying over, but not all fonts copy over right.  And I’m lazy.  I’m just shocked at all the things that are now considered “upgrades” that used to be free.  I know this is a commerce driven world, but it makes me sad when you start with something because it offers certain features free, then it changes.  And I’m sorry, I’m not paying $30 a year to be able to customize my blog.  Heck I can’t even do it, I’d have to get my hubby or my friend Vincent to do it.  And I’d only do it about once a year, tops. If I found the perfect look, I’d probably change very few things ever again!

OK….So, I hope you won’t think ill of me during this transition time.  I like the retro look.  I’m going to try to put little ants in the header, and that will probably be it for a while.  If I can get that done.

Symptom Update: My headaches, had decreased, but recently every time I go to sleep when I wake up I have a blinding headache, like a white light pierces my brain, the intensity doesn’t last for long…but the headache doesn’t go less than a category 6.  So I’m a bit icky most of the day.  But it’s better than it was!

Visual problems are better.  The one that has really stuck around is the…oh I don’t know how to describe it…not only can I not see white on black very well, the white looks gray, but black doesn’t look black-black.  It has this variable tone.  Everything looks a little off in tonal values.  Which is very odd for me.  But I can still tell what color is what, I’m not color blind!!  Yay!  I just can’t tell if they have white  or black added to them.

Very tired.  But not sure if it’s the disorder or the meds, both can cause it.

The Meniere’s has been staying away.  I think the surgery in December worked for that.  The hearing in my left ear, is still gone.  Right is more sloshy.  Had that hearing aid adjusted and I keep asking Stuart, “what’s that noise?”  and telling him to stop yelling at me.  Funny huh?  Now, which will come first, the cochlear implant of the shunt?  Each are inevitable, it’s just which one makes its requirement known first.  Of course, the shunt could be much more important for health reasons, but who knows how long the medication may work.  So much to consider, so much out of my hands.  (don’t you hate that?)

That’s all for today.  Hope everyone is enjoying the First Day of Spring.  (I don’t feel like we had a Winter.)  Everything is blooming at once, my allergies have gone mad!!

I should be saving these for next month.  : )