Tag: CSF

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.

4 days on a Merry-Go-Round and counting

On By WendyIn Chronic Illness7 Comments

The title sounds like I’m going for a world record or something huh?  How many days can you stay on a Merry-Go-Round.   Hopefully, I’ll be getting off soon!

Funny, I used to love riding a carousel! I'm on the left, my friend Jenn is on the right.

Today is day 4 of slosh head and vertigo attacks.  I was awakened again this morning with the sensation that I was moving.  I took my mediation, and headed to the bathroom, hoping I could at least pee before the spinning started.  As I was leaving the bathroom I called out to Stuart, he woke up and I said in a sing-song voice, “It’s Back!”   He jumped out of bed, boy that man can move fast when he needs to.  I’d made my way to the bed with my walker, when I let go of the walker and started to sit on the bed it felt like someone pushed me down!  If I’m going to have a drop attack I’m glad I was already falling toward the bed!

I was in full spin at this point.  Phenergan suppository time.  I noticed the day before that staring at a fixed spot on the wall was not working, it just started moving and my eyes followed.  This morning I started staring at something on my night stand, about 1 foot away, and closed one eye…this really helped.  But I was so sick, the heat was engulfing me.  The diarrhea started first.  Then the vomiting.  Luckily neither lasted long, but I feel like crap.  My head hurts, I do not feel steady enough to walk unassisted.  I’m so very tired, but can’t seem to sleep more than one hour at a time.

I weighed myself our of curiosity.  I’ve lost over 5 pounds in the past few days.  I promise I am staying hydrated and I am eating.

I emailed Dr. Kaylie just to let him know how different things are since I saw him just one week ago.  Just a FYI, so he is aware.  He wrote back, thanked me for the update and so sorry I am feeling bad.  I know he wishes he could do more.

Stuart has a theory…and I’m wondering if he’s right.  He thinks perhaps my pressure has built up again, and I just had a “blow out”.  That would definitely cause these symptoms.   But right now I don’t know what they could do about it.

Stuart talked to the ASL teacher and he said she sounded very apologetic and concerned.  She understands my frustration but doesn’t know how to fix the situation.  She said later the class does go to non-speaking, but I think by that time I’d be so far behind I would be lost.  She admitted this class is set up more like a foreign language class and not a class for the deaf.  We are going to look into a refund tomorrow.

Someone sent me links to a few on-line tutors who she worked with, and we think we will check them out.  (thank you Antonia)

So that’s if for today.

Not a great way to celebrate Stuart’s Birthday!  Him taking care of me….once again wiping my ass, holding my head as I throw up, cleaning every thing up, helping me to and from the bathroom, feeding me…..and he’s been working today and did some laundry.  This Superman deserved a nice birthday.  Luckily I gave him his gifts early.  One I had to because he was about to buy it!  The other, he got a massage at home yesterday…it was supposed to be a surprise, but he decided he was going to give that to himself…after I’d already had it set up for over a month!  Going out to dinner is on hold.  No cake.  I wish I could have doted on him or a change.  I’ll make it up to him. *wink*

Quick update – The little family is doing fine.

On By WendyIn Pregnancy Complications8 Comments
Penelope and Chris on New Year's Day

My friend and her husband have arrived.  Not as much to worry about as I thought.  (Yes, insomnia played a big part in all of that.)

Turns out she doesn’t have preeclampsia, so all the rules have changed.  She had a lumbar puncture and found out her cerebrospinal fluid pressure was way too high!  I sure can relate to that huh?  So they drained some of the fluid, and they are hoping to keep that under control.  She may actually make it to term!!  (yes, that means they will be here longer, but that’s ok.)  They don’t know if they can keep the intracranial hypertension (the fancy name for high CSF) under control, or if it will turn into preeclampsia also, so they have to keep a close watch on her.  Of course, we are hoping she can carry to term, and will not have to spend any more time in the hospital before delivery.

She can’t do the stairs much just yet, but that’s mostly because she’s so sore from the lumbar puncture.  She’s still having headaches, they drained a lot of fluid, perhaps too much too fast (IMHO) so it’s taking a little while for her body to regulate the pressure.  Hopefully the headaches will ease soon.  Right now she’s sleeping.

Penelope is such a lovely person, and her husband Chris is so gracious, I don’t think this is going to be very stressful on me at all.  Actually, it could be very helpful in many ways.

I was feeling a bit anxious about Stuart having to go to Alabama for a week, probably the week of the 13th, if they are here I will feel so much better.   I didn’t want  to miss our sign language class, so I plan to drive to class that night, I think I’ll be fine, but just needed to know if I got into trouble there would be someone I could call for help.  I’ve already mentioned it to Chris, and he was happy he could help.

It completely slipped my mine last night that Chris is a cook!  He’s already thinking of creative things he can make that are meat all our dietary restrictions.  He even assured us that he knows how to be careful with gluten products.  He’s offered to clean house, cook…anything.  I think he just needs to relax a bit.  After a while, he can worry about doing more things around here, but for a little while, I think they just need the peace and quiet that is our home.

They have both been gushing about how wonderful it is to have a peaceful place to stay.  They are so worried about wearing out their welcome, but I told them, that we’d just treat them as if they were roommates.  Their room is theirs, our room is ours, the rest of the house is community space, and as long as they don’t expect us to wait on them hand and foot, they shouldn’t be any trouble at all.  I don’t get to see Penelope nearly enough, I haven’t seen her in a couple of years at least.  I’m happy they are here, and so glad we get a chance to renew our friendship.  (not that we haven’t been friends even though we have been apart, but this is a great chance to get close again.)

We may move the little TV in their room for a little while, when Penelope feels more like moving around we’ll hook the cable box back up to the big TV down stairs.  Stuart and I rarely watch TV, we’ve actually been thinking about getting rid of cable.  When we watch shows we normally watch them from the computer.  It’s easier to watch what we want when we want, and not have to rely on the DVR to record the shows we want. (it often screws things up).  The only thing I really watch on TV live, is cartoons.  But I can always pull those up on Netflix.  (yes, I am love cartoons.  Just like a kid, I can watch them over and over and not get tired of them.)

I love that we are able to offer our home to our friends.  They are special people.   It also makes me feel less isolated, and needed.

I will admit, my husband actually made me a bit more nervous about things last night.  When he said he didn’t know if he could handle people being in the house for so long, I got worried.  Then that jumped to wondering all about what they may need, how we could work things out…ect.  But now that they are here, I think everything will be just fine.  (just liken you all said…I should have known.  Thank you my friends for the reassurance, and guidance.)

About my sleep.  Once again I didn’t get to sleep until about 6am. I woke up at 1pm, right before they arrived.  Again, I had the terrors while falling asleep feeling like everything is spinning around.  Again, I had bad dreams, not nightmares, just troubling dreams.  and Again, I woke up with a headache. Not severe, thank goodness, though it soon turned into a full-blown migraine.  I have to figure out a way to make these things stop.  I know I don’t have much control over the migraine issue, I’ll have to see the neurologist if this continues after my recovery period is over.  But you would think something could be done about the spinning and dreams.  Sometimes I’ll take a Valium a little before bed, and that helps with the spinning sensation, but it makes my dreams a bit freaky sometimes.  And I’m not too sure if the doctor would approve of me taking a Valium every night.  I’ll ask him on Monday.

And about dinner.  I just tasted the sauce and meatballs, oh my goodness, I will have to post this recipe.  How delicious!  And so easy.  Stuart loves meatballs but I always hated making them.  Now, with this recipe, I can make them much more often.

Turns out Penelope can’t eat the sauce at all.  She can’t eat beef either, or tomato products.  (I think the tomato products may just be because of the pregnancy and heartburn, but I’m not sure.)  Chris, is going to make her some pasta with a little chicken, spinach, pesto….  Yes, as I said he can cook!  She won’t know what she’s missing though, these meatballs are wonderful.

What is Between Love and Hate?

On By WendyIn Chronic Illness2 Comments
photo courtesy of ilovemydesktop.com

This was actually a prompt on NaBloPoMo in October, I saw it on another’s blog and started to think about it…and realized the answer…Me.

To be more specific, how I feel about me and the things that have been happening to me.

I still love me….but at times I really hate my life.  I know that sounds negative, and I don’t mean that I always feel this way…but sometimes…when I get overwhelmed by the losses, the pain, the vertigo….I hate it.

Such a dichotomy.  Sometimes I feel there are two of me.  There is the person who hates all of this, who just wants everything to return to normal, to be like it used to be.  Then, there is the person, who is grateful (yes, grateful) for all that I have learned, the friends I’ve made, the life I have now.

Yes, I have chronic illnesses, I often wish I didn’t.  However, they don’t define who I am.  I’ve found that some people only think of me in terms of my illnesses now.  That’s sad.  They can’t see the person I still am, or the better person I’ve become.  I do feel I’m a better person now.  Don’t get me wrong, I wasn’t a bad person before, but I feel better about myself now.  I actually have more confidence, feel like I can make a difference in a person’s life, and I’m more appreciative of what I have.

Do I hate my life…sometimes.  But most of the time, no.  My illnesses are a part of me.  It isn’t all bad.  Yes, I have some very bad days.  However, I feel closer to my husband than ever.  I have a great support system.  There is much to be grateful for.

What is between love and hate?  Perhaps, acceptance.  Accepting that the things I hate and the things I love about me can live together in harmony.

This post was written as part if NHBPM – 30 health post in 30 days: http://bit.ly/vU0g93, and is also a part of NaBloPoMo.

P.S. – Update 2 weeks after the last patches.  I think they are working.  The spinning is better.  I have a bit more energy.  Some days are better than others, but over all, I think I’m better.  I have been having migraines, but I really think they are more weather related.  My hearing hasn’t returned, but to live without the spinning, I’ll learn to live with the loss of hearing.

A MUCH better day!

On By WendyIn Meniere's Disease7 Comments
Lucky Lucy

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

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

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

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

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

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

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

 

 

Quick update…well, perhaps not so quick..

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

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

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

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

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

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

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

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

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

Once again, I’ve bared my soul.

thank you all for listening.

How my life has changed….and the straw that made the camel’s back snap.

On By WendyIn Chronic Illness, CSF, Hip pain, Life, Meniere's Disease, Pain13 Comments

First, I’m feeling a bit better physically today.  Not as much pain, and not having that weird feeling you get after being sedated.

This is the first time after having this procedure that I do feel like I had surgery.  (I may have mentioned that yesterday.  Forgive me if I did.)

Over the past couple of years my life had changed A LOT!

My biggest health problem went from being my hip, to the Meniere’s.

Almost everything in my life has changed dramatically starting in the winter of 2009.  That’s when the Meniere’s came back full force, and I went bi-lateral.  By April of 2010, I was getting the Endolymphatic Shunt Surgery in my worst ear to stop the attacks from happening every day.

It worked, for a while.  By October of 2010, I was ready to talk about the surgery for my left ear, the attacks had returned, happening many days per week.  That’s when I was asked if I’d be interested in the research study.

And if you’ve been following this blog you know the rest.

But just how has all of this changed my life?

  • I wasn’t working when this started because of my hip, but planned to go back to work at least part time.  That isn’t going to happen.
  • I had a little reprieve from my symptoms earlier this year.  For 4 months.  I was almost normal.  I took it for granted, and keep looking for the magic button they pushed to make it better again.
  • I’ve lost a good part of my hearing.  I can’t hear in my left ear, and even with my hearing aid it’s a bit off on the right side.
  • I don’t know how to be a friend to my old friends any longer.  We did things, went places, … you know things you do with friends.  I can’t do most of these things now.  Even when I am feeling better, my hearing is so off, I find it very difficult to spend time with people unless it’s one on one.  Restaurants are horrible, Malls…no way, parties are often torture.  Even just having one person, if they aren’t in front of me talking straight at me, it’s hard.
  • A friend recently told me that she was hurt that I didn’t put more effort into our friendship especially during my good period.  I look back and realize, I didn’t do much with any of my friends, I tried a couple of times, but my hearing was still such an issue.   And people were very busy because, life went on without me, and I was crazy busy, because, life was restarting for me.  It was difficult to get back in the swing of things, by the time I finally felt I was finding my footing….it all came crashing down again.  I look back and think…if I had known this would happen, I would have spent that 4 months much differently.  (certainly not spending most of it trying to become foster parents!  That’s not going to happen now…but I didn’t expect to only feel better for 4 months.  So most of that time, we spent wrapped up in trying to be parents.)
  • So I realized, I don’t know how to be a real friend to the people who were my friends prior to my illness.  I try hard not to have my illness be my life, but in a big way it is.  I have to think about everything I do….how will it affect me, and my illness.  How much will it take out of me.
  • When I do see my friends I try to look better.  I get out of bed, if they come over, put on something decent (even a bra!) and at least make it to the couch.  Lately, that’s a very big deal.
  • When I was feeling better and driving, and would try to meet my friends, I was scared.  I hadn’t been spending time with most people for a while, and I was uncomfortable, talking with them, trying not to talk too much about me.  But my life was changing so much, that was hard.  And now, my life is static, and it’s even harder.
  • Many of my friends don’t like to email, text, or IM…and right now that’s the only way I can communicate.  So it’s hard.
  • I can’t keep my house as clean as I’d like.  We decided to get cleaners to come in, but that might not happen again….(more about that later).
  • I feel like I really needed some time away from here..away from this house…..just a change of scenery.  I was scared about seeing my friends in Tucson, how they might react to my hearing, and health issues.  But we’ve been emailing and texting…so I don’t think it would that big of a deal.  My best friend there is Japanese, so she has a hard time communicating too, I think that makes her more understanding about my communication issues.  But, the trip isn’t going to happen.  (again, more of that later.)

I’ve been feeling like I couldn’t post a lot of things lately.  Things that have really been weighing heavily on me. (like not knowing how to be a friend….I don’t want to be just the “sick friend” people tolerate.  If I’m your friend, I want to be more than that.  And right now, I don’t know how.  I can still listen and try to give advice (if you are willing to “talk” with me by writing.)  But it does seem to take a lot of the personalization out of the situation and I know that’s hard.  I realize how hard these things are for my friends, but I wonder how many know how hard it is for me.

They have their busy lives…I get to watch the world go by without really being able to join in…they can work, exercise, have children, go to dinner parties, go shopping….things normal people do.  I can’t.  And it hurts…down deep inside…that I just can’t.  I don’t fit in.  And I don’t want to be pitied.

Oh, and our house is only 4 years old, and we have to get a new toilet.  For the master bathroom.  They said it would be cheaper than fixing it.  It broke where the tank and the seat are connected.  So one night I went downstairs, and found water everywhere.  So I’m worried about possible mold problems.  I’m being shrugged off about it.  Just put a little Kilz on it….on the ceiling downstairs, yes…but what about between the upstairs floor and the ceiling downstairs?  We had to move from a rented house once because of mold…I don’t want that to happen with this house.

Another straw landed on this Camel’s back today….I think I heard it snap!

Stuart was told his job will end in one month.  They’ve decided they can’t afford him.  *sigh*

He has an interview tomorrow.  But this breaks my heart.  I feel like he will feel he has to take the first thing he finds that pays anywhere near enough, just so we can survive.  I can’t help.  I can’t do anything to bring in some income.  I really want to do something.

This sucks.

But surely, it will get better from here.

Things have to go up from here.

I feel like I’m one of those old cartoons that have been flattened by an anvil…..now just peel me up and pop me out…and things will be better!!

Oh heck, we’ve been through a lot, we’ll get through this.

Life is changing again.

Perhaps it’ll be fun.

More Patches Finished; and 10 Tips by Toni Bernhard.

On By WendyIn Chronic Illness, CSF, Medical Tests, Meniere's Disease, Pain4 Comments

I’m home from the hospital…again.  We got home around 2:30pm.

The procedure went well.  As you may recall, last week when my pressure was tested it was at 15 (very low for me….can be normal for others.)  Dr. Gray added some Cerebrospinal Fluid (CSF) to find out what level I feel my best at, it was 20.5 (this is high for some people.)

We were hoping that by taking me off all diuretics, and having me drink a lot of fluids, my pressure might remain at my optimal level.  Unfortunately, this was not the case.  By the second day after the last Lumbar Puncture (LP), I was feeling bad again.

Today, I went in for another LP, and probably patches (depending on what my CSF pressure ended up being.)  My opening pressure was 16.5, pretty big drop from the 21.5 I had just one week ago.

So they patched me up.  They used a new form of the Tisseel (adhesive for tissues), that is supposed to be much easier to work with and is less likely to set up before it completely covers the leak..  (a problem they had before.)

From what I understand I had 8 patches, but on 6 punctures.  Meaning, 2 of the times they put the needle in they were able to reach 2 leaks instead of just one.

I’m still forever grateful to Dr. Gray for adding me on today.  She was supposed to be off today, going on vacation.  However, she really wanted to get me in before she left, so I will have a good chance of going to Tucson for my father-in-law’s wedding.  First, it was supposed to be just one patient today, then it turned in to 3.  I feel so lucky to have a doctor who is so dedicated to her patients.

I am extremely sore!  Perhaps, sore isn’t the right word…I am in pain!!  My lower back…OUCH!  I’m sure part of it is because I was still sore from the last LP.  I think it’s going to take a little bit longer for my back to feel better, but I DO NOT have a headache!  I’m a tad dizzy, but I think it’s the pain medication, not my normal spinning.

Let’s all hope, I NEVER have to do this again!

 

I saw this wonderful list, 10 Tips from 10 Years Sick.,written by Toni Bernhard ( author of How to Be Sick: A Buddhist Inspired Guide for the Chronically Ill and Their Caregivers.):   You can read her post in its entirety at KevinMD.com, but I thought I’d give you a run down of the 10 Tips.  However, you really should go to the article, and read her explanations – all comments written after the tips here are my own, unless other wise noted.

1. Take Time to Grieve your Old Life, the Create a New One.  – I have found that this comes in stages, or waves, like normal Grief does.  You will feel like you’ve gotten through the grief, then all of a sudden it hits you again.  You all know I’m a firm believer in…well, this isn’t the life I was expecting, so I’ll expect something new.  I have to look at things differently….  If you are a steady reader of my blog, you have seen the many times that my grief is still there.  Just yesterday, I got a bit choked up while practicing sign language thinking of the things I may never hear again.  But I have the wonderful opportunity to learn a new language and meet all sorts of new people.  Oh the things this could lead to!

2. Friendships are affected by illness, often dramatically.  – Have I learned this the hard way or what?  It’s very hard for me to accept this, but all of my friendships I had before my illness changed.  Some have ended, some have continued but it had to change, I’m not the same, and can’t do the same things.  (and that’s hard on both me and the friend.)

I like this statement that Toni makes, “As for friends who haven’t stuck around, our friendship may have faltered for any number of reasons—their discomfort about illness, my unreliability as a companion. I know they wish the best for me, and I wish the best for them.”  I’d like to add, I realize now that some of these friendships would have faltered even if I had remained well.  Everyone has friendships that falter, not just the chronically ill.

3. Illness is the great equalizer.  Anyone can get an illness.  There are not boundaries it will not cross.

4. Trust your judgment regarding what you can and cannot do.  (and give yourself a break!  If you can’t do something, don’t feel obligated to do it anyway, don’t feel guilty…trust in yourself, and know your limits.  Take care of YOU.)

5. Find beauty in small things.  I don’t think I need to add to this.

6. Cultivate gratitude.  This may be hard to do… especially on rough days.  (read part of Toni’s list, I thought…yeah! I’m grateful for that too!)  I suggest you sit down and think of things you are grateful for about being ill.  The list may be short in the beginning, but keep adding on to it as you think of something, or when something happens.  Some of the things on my list (that I’m just beginning) is: 1- how wonderfully my husband has handled my illness and all the help he gives me. 2 – that I don’t have to cook every night (yes, I love to cook and miss it sometimes, but it’s nice that dinner isn’t always my responsibility any more. 3 – the opportunity to “meet” so many wonderful people through my blog, and other’s who understand and “get it” 4 – If I have insomnia, I don’t have to worry about getting up in the morning…..  I’ll keep adding to it, and think I’ll try to re-read what I’ve written when ever I feel like my illness has caused nothing by trouble in my life (perhaps I should read it more often than that, to try to keep those feelings at bay.

7. Some days you’ll just plain feel weary of being sick.   Isn’t that the truth!  But normally, I can, eventually, push the weariness aside, and get on with my new life…or simply be grateful I have a life.

8. A loving caregiver is to be treasured.   This is very important to me!  I try very hard not to take advantage of my husband/ my caregiver.  I hope he knows how much I treasure him.  I wish everyone who was ill, had a loving caregiver, I know I’m very lucky to have mine, and honestly don’t know how I would get along without him.

9. We’re fortunate to live in the Internet Age.  This I am very grateful for.  I have more support from my cyber friends than I ever thought would be possible.  I never thought I could have such touching relationships with people I’ve never met in person.  Also, imagine what it would be like if we couldn’t look up things about our illness?  How could we possibly be a good advocate for ourselves, if we couldn’t find out this information?

10. This is just my life.  I try to say this when I say, so my life isn’t what I expected…I’ll change my expectations.  However, I do feel Toni, says it better by quoting Zen teacher, Joko Beck: “Our life is always all right. There’s nothing wrong with it. Even if we have horrendous problems, it’s just our life.”  She adds,  I find great solace in these words. Not everything can be fixed—perhaps not even my health.  (I agree, and have found that once I accepted this, life got much easier.)

I hope you enjoyed this list as much as I did.