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

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.

Hard to Get Started Again…

I miss blogging, I miss my blogging friends….but it’s hard to get started again.

Now I think of things that have happened since I’ve been away that you don’t know about, and things that are going to happen….so much to talk about I’m overwhelmed.   Eh….maybe not so much.  My life really isn’t that exciting.

I went through a bout of depression, that knocked me off my feet.  By that I mean, I didn’t want to get out of bed.  I’d wake up and think, what reason to I have to get up?  I couldn’t think of a reason, and the sleeping side effect was not helping!

Vancouver Sunrise by Lauazee from DeviantART http://fav.me/d32s7vm

I know part of the depression started when Sandy died.  But the biggest problem is a bit strange….at least to me, my therapist says it’s normal.  I’ve been feeling better.  The Meniere’s isn’t bothering much at all since the surgery in December.  The Intracranial Hypertension (High CSF), is minor and under control with medication.  My migraines are not as painful, but they are causing vertigo often!  So much so that there is no way I’ll ever be able to drive again.  The Migraine Associated Vertigo (MAV) gives me NO warning.  I wouldn’t even be able to pull over to the side of the road, the world just goes crazy immediately.  I can’t even walk around the block by myself, or do things in the yard.  I tried one day, and it did not end up good.  So I’m stuck in our house, unless I have someone with me (meaning Stuart).  I know there is plenty I could do in the house, but when you can’t do things you want….well everything else kind of falls flat.

But I’m better.  Really.  It’s kind of funny.  I was watching Sponge Bob Square Pants and he was singing, “I’ve got an attitude of gratitude….”  And I realized I used to every day think about things I’m grateful for, and I hadn’t been lately.  So I started thinking about it, and I felt better.  Also we’ve been talking about fostering a dog, or perhaps adopting.  Sandy was a rescue dog, and we’ve been thinking that taking care of another dog who needs rescuing would honor her.  This has made me feel better about things, I really miss Sandy, and do NOT want to replace her, but the thought of honoring her by helping another dog….that makes me feel better inside.

Now that the sleeping has gotten back to normal, I’m feeling better about other things too.

We went to see the audiologist on Wednesday.  I picked out all the options for the Cochlear Implant (CI) that I want!  We expected to have heard from the insurance by now, but it’s seems to be a big old pain in the butt.  And all I can do is, wait patiently.   I’m not the most patient person!

Now, I’m started… let’s see if I can’t make a habit of this!

Sleeping

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.  : )

Personify Your Health – #HAWMC Day 28

Prompt for today….Personify your health. If your health focus were a person – what would they be like? Describe them. Visually, emotionally, physically, and personality-wise. What kind of person are they?

I’m again using one of the Bonus Prompts.  I liked this one more than the original prompt.  However, once again, I took a different take on it.  Recently I made a mask showing what I looked like on the outside to most people, and then on the inside I showed my true self.  I felt this answered all the questions put forth in this prompt, but with a little creative flair.

Some of you have already seen this, but I think it’s worth repeating, and for those who haven’t, I hope you enjoy!

Outside of Maxk. by W. Holcombe
Inside if Mask
by W. Holcombe
Mask Inside Top
W. Holcombe
Mask Inside Bottom

5 challenges, 5 small victories #HAWMC Day 27

Prompt for today:  5 Challenges. 5 Small Victories. Make a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small victories) that keep you going.

I think this is a very good prompt, and normally I’d be able to write it very easily, but the depression I’m feeling right now will make this more difficult.  (yes depression, but it’s deserved, I’m not clinically depressed at the moment.  I’ve had a lot to deal with, and the loss of a loved one, so I’m depressed.  Please no worries about my sanity. *smiles*)

A Difficult Challenge - Deciding on treatments.

5 Challenges – 5 Most Difficult Parts of My Health Focus

  1. The constant changing.  Things seem to be settling down, and wham I either get new symptoms or a whole new diagnosis.
  2. Making hard decisions.  Do I get the surgery that may help?  Do I try to live in the deaf world?  Do I take this drug even though it has some harsh side effects?  Do I get another opinion…..
  3. Keeping Positive.  OK, I’m not doing this very well right now, but it will get better.  I know it will.  (there see still positive! I just think it will take longer this time.)
  4. Risking leaving home.   This sounds like I’m afraid to leave home, and sometimes I am.  I have vertigo attacks with no warning.  If I’m more than 30 minutes from home and have an attack start, it terrifies me.
  5. How to keep my caregiver from burning out – How to keep my marriage strong through all of this.
A small victory, a night when I can cook.

 

5 Small Victories – 5 list for the little, good things that keep you going.

  1. For dealing with the constant changes.  I decided long ago that life isn’t going to be as I expected, so I decided to change my expectations.  I’m usually pretty flexible now at thinking, well this will change some things…what will it do, and how can I change to keep myself going.   (I will admit here, I’ve had a new diagnosis that has thrown me for a bit of a loop, the treatments are hard, the decisions are hard.  I haven’t quite gotten to the point where I feel I can think about my new expectations, I simply don’t know what to expect…but when I do, things will fall in order I’m sure.)
  2. Making hard decisions is still difficult, but I feel better about it because I know how to look up many resources, I know other people (on-line) who have the same issues I have so I can ask them what their experiences have been, and I’m very lucky to have a husband who helps me weigh the pros and cons and is able to look at things objectively.  However, he always leaves the final decisions up to me.
  3. Keeping Positive.  –  This hasn’t been a hard thing for me until recently.  I get a bit upset about things when things change…I’ll have a pity party.   Then I say “Enough!”  And start thinking of how I can stay positive.  I think of things I can still do.  I think of others who are going through the same thing, and know many of them help me see that it can be alright, and I want to help others know that too.   Yes, again, recently this has been hard.  I’ve had a lot dumped on me in a relatively short period of time.  I’ve lost a lot.  But I have no doubt that I will get back to the positive me.   I still believe in living every day you feel well enough to the fullest.  Even if that means just sitting out in the backyard.  Do not take things for granted.  And try to think of something you are grateful for every day.  Sometimes I write the same thing every day for a few days because that’s all I’m feeling grateful for that I can think of….but other days I can list many things.   (Toni Bernhard’s book How to be Sick, has helped me keep positive thoughts, and helped me to look at things a bit differently…I highly recommend it!)
  4. I risk going out of the house much more than I used to.  I’m still afraid of having an attack, but I carry an emergency kit with me all the time.  It contains emergency meds, water, wash cloths, small trash bags to throw up in, some Zip-Loc bags to put cloths in after being sick…..things like that.   I’m still a bit leery about going more than 30 minutes from home.   When I have an attack it is not pretty.  I feel humiliated and degraded.  I can’t stop throwing up, I can’t walk, I often have diarrhea, and cannot control my urine.  So I recently decided if I’m going on a longer trip, I will need to wear disposable adult incontinent panties….just in case.  If I have an attack in public, I do not want to be mortified by strangers seeing me defecate and wet myself.  I also always carry emergency medication for migraines.    These measures may seem a bit drastic to some, but it has made it so I can go out and not be terrified that if I have an attack I will be left with no help.  I also carry my phone with me all the time and it has an emergency button if I need to call 911.  I won’t be able to hear them, but I can tell when they pick up and tell them what is happening, and where I am.
  5. Making sure my caregiver takes care of himself, and keeping our marriage strong.  This has been a bit difficult.  My husband will not admit that caring for me wears on him.  He will say sometimes he feels weary then he thinks about what I’m going through and it goes away.  He also says it is an honor to care for me.  He loves me so much, he feels honored that I trust him so much with so much that he has to see.  He never gets grossed out, and always makes me feel loved, even during the most degrading moments.   We keep our marriage strong ….in many ways.  I thank him every day for the things he does, and when I can do things, I do.  I try to do little things he really likes, for example when I can cook, I try to make things I know he loves, and that is healthy.   In many ways my being sick has brought our marriage closer.  One BIG thing we do, we see a counselor together.  Sometimes we individually go in, but normally we are together.  We can say things there and it’s safe, and if we thought it might hurt the other, she can defuse it and make us understand where it’s coming from.  This has made a HUGE difference in how we treat each other.

We also take advantage of my good days. We even try hard on the bad days.  We always show each other that we care.  We curl up together, we massage each other (I admit I get more than I  give here), we go for drives together….and on special nights when I’m really feeling good, we go on a date.

 

This was easier than I thought it would be.  I do still have some positive outlooks still in me.  Yes, I’m depressed, but I should be, as I said before.  I think the only reason I haven’t been able to deal with the latest diagnosis (Intracranial Hypertension) is that I’m getting conflicting news from different doctors in my team.  And I just don’t know what’s going on with this….my migraine specialist thinks most of my symptoms are caused by migraines.  So the IH, may not be a big deal right now.  But the medication for it is still helping, so that says I should have it….but I’m confused.  So confused.  But I’m positive, it will get better.

So yes, this was a good prompt.  It made me think about my health issues, and it made me look deeper about things than I had been.  I’ve only been dealing with the overwhelming emotions, not the thought process behind them.

So thanks WEGO HAWMC team for this prompt!

Daily Schedule #HAWMC Day 25

Today I’m using a prompt from the Extra prompts they sent us.

Daily Schedule. Write a list of your daily routine from the moment you wake up until the moment you go to bed. Be honest!

photo courtesy of istockphoto.com

Honestly, I don’t have a set schedule for any day. My days are ruled by my conditions. If I’m having a day filled with vertigo, or migraines I spend the day in bed. If my hearing is way down, I spend the day as alone as possible. I often have doctor’s appointments.  My days change from one to the next, a lot.  If I’m feeling a bit better, I do more….

Here’s a recent weekend day.

After a restless nights sleep I awake around 9am with a blinding headache. I’m seeing double, with shadow spots on the walls. I take the medication that should lower my CSF pressure(cerebrospinal fluid pressure), and wait to see if it will relieve the pain. My husband brings me some breakfast in bed, along with the rest of my morning medications. The headache has not eased. Finally, I decide I should take some migraine and pain medication also. I try to sleep some more, this time sitting up, hoping my CSF pressure will lessen.

Noon – The headache is still there but much better, I’m hungry, but not sure I’m steady enough to go down the stairs. My husband brings me lunch. I decide to check my email, and do some things on the computer. Focusing up close is much easier than focusing at a distance.

2pm – Time for my next CSF pressure pill. I’m feeling much better, and steadier. We decide to take advantage of this time feeling a bit better. I want to go to the local Co-Op to pick up vegetables and meat for dinners for the week. We had a good trip to the store, and a nice ride home.

4pm – Home. I’m tired just from the little bit of shopping we did, and the ride. I help put the groceries away, and start to plan dinner. I turn and feel the world move. Oh no.

5pm – 9:30pm I have vertigo. This vertigo is caused by the Intracranial Hypertension, not the Meniere’s. I can tell because if I keep my head in one position and concentrate on something still close to me I will stop spinning, but if I move, the vertigo returns. If I was having a vertigo attack from Meniere’s I would not be able to stop it, no matter what.

9:30pm I am completely exhausted from the vertigo attack. Finally, I can move. I eat a little something, and head to bed….with a lot of help from my husband.  Take my nightly medications, and try to sleep.

This is a somewhat normal day. I don’t always have vertigo. I do normally wake up with a blinding headache that often takes hours to get under control. And we always try to take advantage of any time that I’m feeling well enough to do something. (I know going grocery shopping doesn’t sound exciting to most, but I love to cook, so shopping for food is exciting to me.)

Don’t Forget!! #HAWMC Day 22

Today’s Prompt:   The Things We Forget. Visit http://thingsweforget.blogspot.com/ and make your own version of a short memo reminder. Where would you post it?

Instead of creating a reminder on list on-line, I posted notes through-out my house.  Things we need to remember.

How many times have I forgotten to take my medication? Too many! Now I keep them all sorted by day and time to take, and have them where I won't miss them. Must remember to take my meds!
2 Things I have to remember before I can take a shower.
1 - Take my hearing aid out. Yes I have gotten in the shower and started to wet my hair and realized...Oh NO! I have my hearing aid in! Luckily no damage done, but this I must remember!
2. Because of the vertigo and disequilibrium, I cannot take a shower without someone near to hear me if I need help. I've fallen a few times, or ended up sitting on the shower floor just trembling in fear. I need to swallow my pride and ask my husband for help.
My hubby needs noise to sleep, so he leaves the bathroom fan on at night. This doesn't bother me because I take my hearing aid out. However, in the morning the first sound I want to hear when I put my hearing aid in is not a wind tunnel!!!! Since my hearing is distorted, the fan doesn't just sound like a little fan, it sounds like I'm in a huge wind storm. So honey, please remember to turn the fan off.

The 2 notes are on our front door, things we don't want to forger when going outside.
1 - I have an emergency kit made up in case I have an attack when I am out. This item we should never leave home without. Also I need to drink a lot of water with the medication I'm on, and I also need to have water close in case I have to take emergency pills. A Must that we Cannot Forget when leaving the house!
2 - I'm often spent by the evening, so Hubby needs to water the plant in the front. We have a small area with herbs, and some flowers. He often forgets to water. This has made for an unhappy wife. So Watering the Plants out front...Important not to forget!
Very Important, Every Day, a note to myself "Remember You are Loved!"

Health Haiku – #HAWMC Day 6

“Quick Send Money Now!”

Yes, I have brain disorder,

But, I’m not Stupid!

image from seemehearme.biz

Cannot Hear the Voice

Startled by the man behind

He assumes I’m rude

image from http://juick.com/ellma/1346507

Living in Fun House

Is a scary place to live

Not knowing what’s real

The previous Haiku’s all represent health issues I deal with.  The first, a little joke about having a brain disorder, Intracranial Hypertension.  The second, a challenge about losing my hearing late in life.  Of course, anyone who is hearing impaired may have the same struggle, I do not know.  And lastly. this haiku talks a bit about living with both Intracranial Hypertension, and Meniere’s. Each cause me to have vertigo and other visual disturbances.

I hope you have enjoyed.

Taking Control…even a little bit.

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.)

Under Pressure

http://blog.spacetec.org/2011/03/18/under-pressure/

A friend of mine, who is also going through having Idiopathic Intracranial Hypertention,because of her pregnancy.  (Hopefully, her’s will go away after the baby is delivered.) posted this on Facebook for me…..I thought you might like to see it, but truthfully, I had no idea how add a video to my blog.

Hhahahaha

So I asked one of my blogging buddies who puts videos on her WordPress blog all the time and is going to school for IT stuff.  (Thanks Fiona) I hope it worked!

(I must confess, I thought I’d already posted this before I got her instructions and you would have just gotten a link to the video.  Then I looked today, and there it still is, unpublished!  Ha!  How lucky!  Now you can see the video embedded in the blog.  It is very well done, and not terribly long, I hope you enjoy it.

I read something about Idiopathic Intracranial Hypertention last night, and I had a light bulb moment.  They used to call this, a pseudo tumor.  Because it acts like a tumor.  I heard that but it didn’t really sink in as to what it meant.  Then the doctor, who I was reading explained, it causes the same symptoms as a brain tumor.  I thought, “Oh Shit!”  This really isn’t good.  A friend of mine had a brain tumor, she really only had horrible headaches then they took it out through her nose!  She’s doing great now!  I thought….I’d rather have that.  (then I felt kind of guilty.  But…ummm, if her’s never comes back, she got off a bit easier don’t ya think?  I’m sure she’d agree, I know she would actually.)  I am such a bitch lately.  But I do love this friend, she has been a good friend to me through all of this and I didn’t mean I’d switch with her, I’d just like to have something easier to cure.  Or be able to cure at all!

But there are options, I’m in good hands.  Called Dr. Kaylie’s office today, well Stuart did. and he said if I needed a shunt I’d be getting an LP shunt.  Meaning it would be attached at the Lumbar Puncture site, not to my brain, so it would not interfere with the cochlear implant.  So I will never be completely deaf!  Whew!  One thing less to worry about.

Stuart also asked about disability, Dr. Kaylie said to just send him the paperwork.  My psych. said the same thing.  I think I might have a chance at this.  A vestibular specialist, a psychiatrist, a neruoradiologist, and a neurologist…and possibly an orthopedist all saying I can’t work.  Someone should listen.  But I was just looking at the paperwork, and it asked, what date I could no longer work.  Heck, I don’t know.  When I finally completely stopped working, it was because Stuart got a job in California.  I had gone from full-time to a part-time job where I only worked 15 -20 hours a week, and made my own hours.  I also went from being a Custom Picture Frame Shop Manager to merchandising greeting cards.  Because that was all I could do…and it hurt like hell.  I was already having trouble with my hip, and had to quit my framing job because of the Meniere’s.  So when we moved to CA, we decided I’d just pay attention to my health.  Then I was never able to go back to work.  I tried one Christmas to work in a retail store a couple of days a week.  I lasted 3 days and couldn’t stand after that for over a week.  I had surgery shortly after that.  So what date do I put down?  When could I no longer work….what magical date?  I kept trying and trying damn it!  Hell, just last year I worked for 1 week answering the phones for Stuart’s job, but I couldn’t even do that now.

Stuart’s ready to ask a lawyer to handle the whole thing, but that can get expensive can’t it?  I don’t even care about the money.  I just want to have the label.  That sounds kind of sick.  But there are advantages through the ADA and other organizations if I am officially declared disabled.  Plus, I need to accept it.  The money would be helpful. don’t get me wrong, but right now, there are more important reasons I need to have this done.

I have really begun to hate WordPress.

There is a button at the top of my screen, “Congratulations, you win the prize! The chance to take our 5 second survey : )”  so I clicked it….It asked if I would reccommend WordPress to my friends and family, I said 0 – Not on your life…it comes back saying I’m not an authorized user for this Dashboard.  What?  I’m using the Dashboard!  You )%(%*^&$.  I went to the Users tab, and I’m the only authorized user? What do they want?  That’s just strange.

I can’t get any Theme to look like I want.

They want me to PAY to change the size of my Font!  I didn’t realize this before, but now that I’m visually impaired, it makes a difference.  (and it’s killer to read white on black now, I see gray on Black and it’s very hard, I had to change my other blog.)  I feel horrible, some blogs I’ve been reading a long time, now, it’s so hard.  There are some I can still read, but I can’t read their side bars.  I guess that’s OK.  I used to love a black background.  Heck, my Create To Heal blog still has one.  But since the font is so big and a bit yellow I can still read it, but I may have to change it.

I want to say right now!!  IF ANYONE HAS ANY TROUBLE READING MY BLOGS, PLEASE LET ME KNOW.  I WILL GLADLY CHANGE THE COLOR AND (IF I CAN) THE FONT OR FONT SIZE)  I am writing to WordPress today about my concerns about the font sizes.  I do not like that I have to hit Control + to make my screen bigger so I can read my own blog!

I’m not happy with the look of my blog right now.

Not cute enough.

Not Wendy enough.

But I don’t want to change from Word Press, I’m afraid I will lose my followers…and those who are just now finding me through the WEGO Health Activist thingy.

what to do.

WordPress, really wants me to pay for everything.  I can’t do that.

*sad face*

I’ll figure out something.  I’m sure I will, I’ve come up with some kind of cute looks.  We’ll see.

Hope to surprise you with a new look soon!