Category: Pain

I Didn’t Expect

On By WendyIn Avascular Necrosis, Chronic Illness, Hip Replacement, Pain, stress5 Comments

expectationI didn’t expect the depression I’m feeling….

I saw the signs, I have so much going on, there are so many outside reasons….but I’m struggling….this is why I’ve been away so long, why my blog has been suffering, why I simply haven’t.

Today, I’m going to write, I have too much to write about, I am overwhelmed by how much I have to write about, but I need to…..

I didn’t expect to have vertigo almost all day the day before surgery.

I didn’t expect to have vertigo in the waiting room right before surgery.

adapted from Teen Titans cartoon
adapted from Teen Titans cartoon

I didn’t expect the intense pain after my surgery.  During surgery the back injury that just got better was aggravated.  I was not just dealing with surgery pain, the pain I expected, I was dealing with the back pain and severe sciatic pain.  To make it worse, I couldn’t move to make the back and sciatic any better.  I was stuck, in so much pain.  We could not get this pain under control.  I have issues with pain medication.  Everything makes me hypersensitive, I feel like things are on me, it makes me itchy.  So I was only prescribed Tylenol and Tramadol.  This didn’t do it.  They tried to put me on my side to help, this caused me so much pain I swear I wasn’t even in the room it was just pain.  Luckily, it didn’t last long.  I decided I’d rather itch.  They tried Hydrocodone.  nothing.  I don’t know what all was tried.  at 2am they tried Toradol, this is a NSAID given by IV or injection.  I’ve had it for my migraines before.  This finally worked.  Probably in conjunction with everything else.  I finally fell asleep.  Only to be awoken at 4am to have my blood drawn.  Then at 6am for something and at 7am because shifts changed….it was an exhausting.  But I have to say, the night nurse who was trying to help me was absolutely wonderful, I couldn’t have asked for better care.

I didn’t expect to have low blood pressure, a magnesium deficiency, and have to stay another night.

I did get out of bed the first day and walk a little, I was told I did great.  (the intense pain hadn’t started yet)  I had my morning Physical Therapy on the second day and did well, even though I was a little dizzy.  I didn’t expect to have a vertigo that afternoon.  During my vertigo attack I had 3 different people come to work with me, including my Physical Therapist.  No afternoon PT, no going home.  They also had to make sure my pain was under control before I went home.  It was better that night…but I had to sleep in a recliner, glad we bought one for me the right before I had my surgery.  (ugly thing)  I didn’t expect to HAVE to sleep in a chair for many nights after I got home.  I didn’t expect to cry from the pain so much, after my surgery.

I didn’t expect my sister to come and help.  I am very grateful.  I didn’t expect it to be so hard for Stuart to stand back and allow someone to help.  He said he’s just used to doing it, it’s hard to ask someone else to do things.  Yep, I know that feeling.  It’s very hard to ask others to do things.  Especially, for me to ask for the little things.  It’s hard to ask for things like something to drink, or a snack, to reach something for me, to get me a blanket if I’m cold….ect.  Yep, I’m having a hard time asking for things too.  I’ll ask for someone to go to the store, or do some laundry, things like that…..but it’s the little things that get me.  It makes me feel so helpless.  Eh…I guess I am.   (I feel pretty weird having anyone other than Stuart do private things for me too…that is one of the hardest things I’ve had to deal with…one of the hardest)

I didn’t expect to have vertigo every day since my surgery.

I didn’t expect for Stuart to have to take off a second week from work.  (I think he got in a little bit of work the second week…but not much.)

-Rachel Wolchin thegoodvibe.co

I didn’t expect…..

I didn’t expect to have a death in the family two days after my surgery.  It was my extended family by marriage (my cousin’s daughter’s husband), I didn’t know him personally, but the circumstances of his death were hard….so very sad.  He was young, in his late thirties.  He was EMT on his way to work and pulled off and parked at a gas station, they found him slumped across the steering wheel dead.  The autopsy has been inconclusive.  There are still test out, but they don’t expect to find anything.  They will probably have no idea why he died.   They also found out a lot about him that his wife had no idea about, it is very, very sad.  It also makes you think…..and think….

I didn’t expect for one of my father’s friends to die the next day.  I knew him growing up.  He worked with my father, they used to Barbeque (or barbecue in some parts) together.  When I say Barbeque, I mean Southern Barbeque; a huge hog in a pit, slow roasted all night long….oh my it is good.  We used to have picnics and things over at his farm.  He let me touch my first cow, it was much softer than I thought it would be.  He was 12 years younger than my father.  As you get older you see more and more friends die, I wonder if my father is having a hard time with this?  I’ve noticed he goes to a lot of funerals.  That’s a subject that would be hard for me to broach with him.

I didn’t expect my friend Laurie from Hibernationnow’s Blog to die on April, 21st.  She caught the flu in February and that just snowballed into more and more, she just got sicker and finally her body couldn’t take it any more and she died.   I’m in complete in shock about her death.  I keep looking for updates to her blog in my email.  I look for her to chat with me on Facebook.  I heard from her in some way nearly every day.  It may not have been personally, but I always knew she was there.  Now she’s not.  Just like that….suddenly her voice is gone.  Her thoughts are not in my life any more.  Laurie fought fibromyalgia, she was quirky in ways and loved the color yellow, she loved the ocean, writing, and most of all her family.  We were both foodies, and we both lost a dogs who left huge holes in our hearts, and later we both adopted rescue dogs who took over a new place in our hearts.  The one thing we disagreed the most about was our feelings about the chef Alton Brown.  She hated him, I love him…..it was quite a debate on one of her post!  I will miss you Laurie.  All the support and love you gave me, and our friendly banter.  May you be pain-free in a nice warm place near the ocean taking a walk with your father.

I didn’t expect my dearest friend’s mother to die this week.  She has been battling Amyotrophy Lateral Sclerosis (ALS, otherwise known as Lou Gehrig’s disease) for the past 9 months.  I’m actually relieved she didn’t have to live in her body with her mind fully aware without being able to communicate with anyone for very long.  I loved Kathy very much.  I wanted so much to be there to help care for her.  I wanted to be there for my friend and help her through this difficult time.  Now I can’t be there for her again.  The death of her mother is going to devastate my friend.  She was closer to her than anyone.  They talked daily.  They were best friends.  Her mother’s illness took a toll on the family.  Yes, she will have a lot of people around her, but I know she needs her best friend.  It is extremely hard not to be able to go.  I am so tired of feeling useless.  But this should not be about me, it should be about Kathy.  She was such a strong woman.  A single mother, raising 3 children mostly by herself.  She was so generous and kind.  She worked so hard and hard and hard….and she gave and gave and gave.  This probably gave her more joy, but from my view I wish she had been able to take more time for her.  She was just about to retire when she got sick.  I know Kathy did have a good life, and celebrated life, but I also know she was looking forward to slowing down and just enjoying her grand children.  Please don’t put off living until tomorrow.  Kathy was one of the best people I knew.  That sums it up pretty well.

I didn’t expect writing this post would make me feel better.

tonibernhard.comquote

I got lost!

On By WendyIn Chronic Illness, Pain9 Comments
Flying Brain by Pixelnase
Flying Brain – photo from deviantArt.com created by Pixelnase

Throughout my journey having chronic illnesses I’ve fought hard to not allow my illnesses to define me.  Yes they are a part of me, but they aren’t all of me.  I worked hard to keep some sense of normalcy in my life…and to try my best to keep true to me.

I feel after everything that happened this past year….and not all of them had to do with my illnesses…I lost myself.  I became the sick person.  I stopped trying to be me.  I stopped posting regularly, I stopped doing my art, I stopped cooking (partially because I had a dizzy spell while cooking and almost hurt myself, but I’ve been to scared to start back)….I’ve been living in fear and self loathing.

2012 was one of the hardest years I’ve lived through, (topped only by 1993, the year my mother died).  I had 2 new chronic diagnoses, my dearest friend and constant companion of 19 years died (yes I am talking about Sandy), I had contact from someone I’ve loved unconditionally who I haven’t heard from in years and the correspondence was filled with hatred….just true and deep rooted hatred.  It would be hard enough for me to deal with anyone hating me, but this person….well the wound cut deep.  It’s so hard to explain.  I don’t remember a lot of my life before I got my bipolar stable, and I’ve changed so much since I met and married my husband, and since I’ve been sick.  I love me…me as a person.

But me as a person was lost.  I didn’t realize it until we came to Tucson and I got so sick.  Not just my normal chronic illnesses, but more and more.  I had a cough that wouldn’t go away…I’m still coughing some.  I finally saw the doctor, and I had bronchitis and Asthma.  I was born with Asthma, so I’ve known it was there, but supposedly I’d “grown out of it”.  I would have an attack if I got around someone with perfume on, or someone smoking, or around things I’m allergic to.  But now, I’m dealing with it every day.  And unfortunately, I had more vertigo attacks in November than I had the entire year combined.  I’ve also been having a huge problem with my GI system.  I know my food issues and I’m careful, but things sneak in….and I had no idea….still I’m having bowel issues.  And I’m gaining weight.  I’m back to being 5 pounds from my largest weight.  And that’s way too much for my short body.

It has just been too much.  More illnesses.  More conflicts to deal with.  More being stuck in bed.  I got lost and didn’t even know it.

I was lying in bed recently and realized how much I hate me.  No, I don’t hate me as a person, I actually like the person I’ve become.  Adversity really does create good people.  (and I think I am a good person)  But, me…my body….I hate it.  I’m larger than I want to be, or should be.  I have no energy, I’m sick ALL THE TIME!  I feel my body betrayed me. And I don’t want anyone to see me when I’m ill.  When I do actually get to see someone, I try my best to look my best.  I know this probably causes a bit of confusion for people, I don’t look sick when they see me, so how can I be so very sick.  I remember one day when  friend came to visit with her 2 children.  I loved seeing them, but I started to feel very worn out and dizzy before they left.  I tried so hard not to let them see.  Soon it was time for them to leave, Stuart and I walked them to the door, arm in arm….and when the door was closed, I collapsed.  But I couldn’t let her see.  I think I’m afraid if people see how sick I am they will shun me, and I will lose all my friends.  But really, I think I’ve lost most of them anyway.  I’ve hidden away.  And I don’t think I could stand for someone to see me really sick.  I’d rather be with just Stuart than for others to feel uncomfortable because I’m sick.  Gaining weight hasn’t helped.  People expect sick people to be underweight.  Instead I’ve gained about  60 pounds.

So, now that I know what has been happening to me, I am determined to get me back.  The inner me.   My blog was very important to me, but I allowed someone to scare me away from it.  I can’t do that.  I have to write and reach out to those who can help me and those whom I may be able to help.  This is such an important part of me.  My art has been an important part.  I wanted to have something I did consistently….but I’ve failed…I need to get that back.  I need to do something that is productive and useful.  I’ve felt like a useless burden for too long.  I found out about a few charities in my area who knit or crochet blankets, scarves….ect….for needy.  One charity that really spoke to me is one that donates to foster children, so they will have something special that was made just for them.  (as many of you may know, Stuart and I had planned to be foster parents but ended up not being able to because my illness got so much worse).  Foster children hold a special place in our hearts.  The charity I found makes items for foster children in a neighboring county, at some point I would like to see the same type of charity started for the county we live in.

So here’s the beginnings of a plan for me.  Begin doing something that will make me feel more like I’m a contributing member of society, learn to love my body no matter what size it is or how sick it is, stop listening to old ghost from the past and hope they can move past their hate and find a happy life, learn more about dealing with my new diagnoses, and learn American sign language.

I didn’t mention, I haven’t been able to hear out of my right ear…with my hearing aid…for about a month.  So we really need to learn ASL.  We will be starting a class here in Tucson next week.  It is a beginning conversation ASL class.  We will miss the last couple of classes, but feel it will be worth while.  This is through a Hard of Hearing and Deaf group, many of the members are deaf or severely hard of hearing, so I shouldn’t have a problem with not being able to hear in class.  (Stuart talked to the teacher and she assured him it wouldn’t be a problem, and many people who have Cochlear Implants are members there too.

 

Migraines, Vertigo, Disequilibrium, Pain – mix and repeat often

On By WendyIn Chronic Illness, CSF, Meniere's Disease, Pain12 Comments

Where have I been you ask?  Or perhaps you haven’t noticed (don’t tell me, I want to think I was missed) I haven’t been commenting as much on other blogs, or chatting away on mine (I know for a while I’ve been a little silent here so you probably didn’t notice), I haven’t even been able to answer emails in a timely manner.  I logged on today and I had over 230+ emails in my inbox.  Normally there are about 30…so how many days has it been??

I’ve been much sicker, if that’s the word to use, lately.  I’m not really sick, it’s my chronic stuff, plus a little oops added in. First I’ll tell about my oops.

I know in my last post 30 things you may not know….. I mentioned how hard it is for me to wash my hair.  It’s normally easier in the bathtub than the shower (I’ve fallen too many times in the shower), but I’ve decided that my bathtub is evil.  I’ve had heart palpitations in the tub and nearly passed out, I’ve slipped a few times trying to get out, once I smacked my head against the wall.  My latest fight with the tub?  I pulled the tendons in my left ankle, and knocked everything out of whack on that side from my foot to my lower back, while I was lying in the tub.  Yes, I said, LYING IN THE TUB!  Only me right?  Ok, it was a little more than just lying still.  I had scooted down in the tub to rinse my hair, then I pushed with my feet to scoot up – my left foot slipped and went in a direction it shouldn’t have.  But I must say, it really didn’t hurt. When I got out of the tub I could stand fine as long as I didn’t go up on my toes.  So I’m thinking, no big deal.  Then Stuart looked at my ankle and said, “Oh My!”.   My ankle was very swollen!!  My lower back hurt, but my ankle really didn’t.  If you touched the swollen area it hurt, but not much.  This happened last Friday night.  On Wednesday the swelling was down and I had a massage, she helped the leg and back, but last night my ankle was swollen again.   (not that I’ve been on it, I had vertigo all day yesterday so I was in the bed.)  So now you know.  I am afraid of my tub and shower….makes it pretty hard to keep up personal hygiene, but I manage….thanks to that darling man of mine.

What else had been causing me frustration and just plan fear lately?  I was supposed to have the Botox shots for my migraines on the 18th, my doctor was sick and they had to reschedule….they wanted to make the appointment in November!  We are leaving for Tucson, AZ the last week on October, we won’t be here in November.  So they scheduled it for October 20th…I cried.  I had the worst time with migraines this past month.  Right before my period started the pain started…they gave me special medication for that time of the month, it didn’t work.  I had 15 days out of 20 were spent in a dark room, often without any hearing device on because the light and sound would make me throw up.  Throw in some vertigo, and we have a great party going on.  Luckily, the appointment has just been changed to October 3rd.  This should be during my period, so it will be a real test.  Big problem now?  If it works I need to have another shot regimen in 3 months, we won’t be here.  I’m not sure I can find a neurologist in Tucson who would be willing to see me just once to give me Botox injections.  Actually, I doubt I will be able to, so it will be more like 5 months between injections.

Recently I’ve been having more vertigo, and constant disequilibrium.  Frankly, it scares me.  I’m pretty sure some of this is Cerebrospinal Fluid Pressure.  We changed my medication that controls the high pressure to a times released form instead of the kind I have to take numerous times a day (I kept missing one).  Since I’ve been on this new version of this medication I’ve been having symptoms like I did when my pressure was too low.  I started back on the regular form of the medication yesterday, I hope this really is what’s wrong.  Because the vertigo is scary.  I’m proud of myself about how much better I’m dealing with it.  I don’t panic as much, I’m sure I would if it was a severe attack.  My biggest fear I have is that when a severe attack hits it will never end.   I’ll give you an example of my days…Yesterday I woke up to the word spinning, slowly, but still spinning…this went on all day.  Luckily, I was able to sleep through some of it.  Then when it actually got to be bedtime, I couldn’t sleep.  So many things going through my head.  I kept thinking, something doesn’t add up….but I’m not sure what…at least I finished Uncle Tom’s Cabin…and still laid awake until 5am.  Today, I’m not spinning, but I can’t walk straight.  I can’t move my head at a normal speed or I will fall down from the disequilibrium.  In the past 48 hours, I’ve been to the bathroom once unaided.

OK…I know this is another venting post.  But I’m scared.  What if the change in medication doesn’t work?  Then why is this happening?  We’ll figure it out, or I’ll learn to live with it!  Right?

The other night I was talking to Stuart and told him that sometimes I envy people who don’t have to feel like I do.  Of course, he said that’s natural, part of self-preservation and all that….  I then told him, I would gladly be the only person in the world who had to feel this way if no one else ever did.  And I mean it.  The thought that others go through this is heart breaking to me.

The Lorax
photo from smh.com.au

I do have some good news about my hearing!  (unfortunately I had to cancel the last 3 appointments I’ve had with my audiologist because I was too ill to go, so I can’t tell you what she has to say, but I have some Wow! news.)  Stuart got The Lorax DVD from Netflix and we curled up in bed and watched it on the computer.   I used the direct link cable and linked the computer sound up to my processor.  I didn’t expect to hear any better than I hear the TV, I thought I’d mostly read the movie, as usual (thank goodness for closed captioning!), but this was different!  I heard the movie!!  I heard the characters the way they were supposed to sound!  I really heard it all, just right!  Isn’t that amazing?  That gives me hope that one day my CI will give me sounds that are normal.  Right now, I hear better with it than my hearing aid, but sounds are a bit off, however, I understand things more.  It’s coming along!  And The Lorax is my new best friend!

 

Day 23

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

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

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

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

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

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

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

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

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

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

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

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

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

I leave you with this…..

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

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.

 

Emotions from A-Z

On By WendyIn Chronic Illness, Pain, stress5 Comments

I feel like my emotions are all over the place lately.  The stress I’ve been under is starting to wear on me.  Funny, I wasn’t even aware it was there, I thought I was handling thing pretty well.  For the past few days, I’ve found myself just crying.  Crying and crying.  My thoughts are all over the place, and I just feel…I can’t think of a good word that will fit…so I sat down last night and listed the letters A – Z and beside each letter, I wrote the first thing that came to mind.

  • A – Abandoned
  • B – Blame / Blue / Bad /Brave
  • C – Confused / Condemned /Caring
  • D – Desperate / Disabled
  • E – Effort / Easier
  • F – Fear
  • G – Grouchy / Groggy / Guilt /Grateful
  • H – Helpless /Hopeful
  • I – Internalized
  • J- Jumbled
  • K – Kicked
  • L – Loved / Lacking / Loathed /Loud
  • M – Mixed Up /Migraines
  • N – Nuisance / Nauseous
  • O – Overwhelmed
  • P – Put Out / Placated / Period / Pain
  • Q – Quizzical /qi’  (ch’i)
  • R – Rough /Roar
  • S – Sedated /Strong / Stressed
  • T – Tearful
  • U – Unexplainable
  • V – Vexed / Valium / Vertigo
  • W – WHY? WHAT?
  • X – X-irradiation (X-Ray, but doesn’t X-irradiation sound cooler?)
  • Y – Yanked
  • Z – Zero
During this exercise, when I’d think of certain letters, a ton of words would pop in my head.  Other letters, produced little…but they all said something.  Yes, much is negative, but there is some positive in there too.  On a different day, perhaps the positive would out weigh the negative…but today…well…
There is so much going on inside me right now, that just will not come out.  (perhaps, I’m afraid for some of it to come out.)
Having my psych tell me that he felt I needed to fire him, really caused a downward spiral for me.  Not that he would say that, I respect the fact that a doctor would say that if they feel they can’t help you…but the timing sucked.   Not only did I feel abandoned, I felt untreatable.  If he can’t figure it out, why should any other psych be able to.  I’ve always been impressed by D’s knowledge, and willing to learn more and more.  I can’t imagine having a better psych.  I’ve had a few…I know there are some real losers out there…I don’t want to go through that again.
I’ve had some other things happen lately.  This camel doesn’t have many more straws in can carry.
One day at a time…that’s all I can do.

She’s Low – Again…

On By WendyIn Chronic Illness, CSF, Medical Tests, Meniere's Disease, Pain6 Comments

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Strangeness.

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

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

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

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

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

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

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

Why am I so nervous?

On By WendyIn Medical Tests, Meniere's Disease, Pain10 Comments

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

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

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

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

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

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

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

That’s where my head is tonight.

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

Window of the phases of my life.

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

Time to say something again…but what?

On By WendyIn Chronic Illness, CSF, Meniere's Disease, Pain6 Comments
My Headache Guide, showing manipulated photos of me to help the doctors understand my pain. I shared this with Dr.D today and he asked to keep a copy. I'm glad he understood it, and thinks it works. My therapist saw most of it on my other blog, and she loved it, so I decided to print some out.

**I’m sure I should proofread this, and fix many things…but you are getting my stream of consciousness, as it came out, at the wee hours of the morning, when I can’t sleep….if it’s too crazy, just let me know…and I’ll do something with it.

Let’s see, what has been happening since my last post, what do I want to share?  (other than the headache pain scale)

I know!

I had an appointment with my psychiatrist a couple of weeks ago, he feels I need more of an antidepressant.  Given everything that’s going on, he’s concerned the depressive side of my bi-polar disorder will rear its ugly head.  Trouble is, I’ve tried just about everything.  I usually have side effects, or some drugs don’t work with others I have to take, and some just didn’t do much.  So he put me on a brand new antidepressant on the market…Viibryd.  (I think I may have mentioned this.)  I took it for 4-5 days and had the most violent diarrhea ever!  As I told my doc today, “I had to have an ice pack between my cheeks.”  He looked so sad.

This is another doctor I love.  I’ve been seeing him for 8 or 9 years.  Today he looked at me and said, “I think you need to fire me.”  Uh, NO!  I asked what could someone else do that you haven’t done, and you know my history.  I told him, I think all my emotions right now are valid, he agreed.  I said that I believe you really have a problem when you are having in appropriate emotions to things.  He shook his head yes.  I also mentioned that he told me once that I’m so in tuned to my body and my bi-polar illness I can tell immediately if I’m going to have trouble, if I’m the slightest off, and I call on him.  He again, agreed and said no one else he sees will do that.

Then he looked at me, and said, but I care so much for you, I want to take the edge off of some of this pain, and don’t want you to end up in the deep end.  He said, how about a second opinion…I hesitated.  (I’ve really had some horrible experiences with psychs in the past, and am very afraid to go see anyone else.  I’ve known Dr. D for so long, I call him by his first name, I know his wife, I’ve met his child….I was with him when he had to deal with his brother’s suicide.  (they do think it was accidental.  He was very sick and on a lot of medication…and simply took too much.)  But that takes a toll on someone.  And he didn’t have to tell me.  He’s open and honest with me.  (I don’t think he’s like this with everyone, but we’ve been together a LONG time, and have a very special relationship.  He understands with me, that I’m better with a professional psych person if they share some of them with me.  If they trust me with that, then I can trust them.)  I don’t want to see anyone else!

So we compromised.  He got my permission to share my file with another doctor there in his office and ask if they have any suggestions.

(during all of this, I actually had to lie on his couch because I was so dizzy, had a headache, and my ear was roaring….I actually thought it amusing that I actually lied on the psychiatrist couch…how Freudian.

Oh, I did tell him, if we find out I have high pressure he could put me back on Topamax, I might be stupid for a while, but at least I’d lose weight!  He mentioned when I got there that I’d gained weight…I said “that’s not nice.”  He looked taken aback, then I laughed.  yeah I know..but not really, it’s just moving around since I’m so sedentary..losing muscle mass so the scales are so bad, but the look…is not pleasant.  (I looked in the mirror today and thought, “are you really sure you aren’t pregnant?”….oh, I remember you must have sex for that..so guess not!)

Dr. D decided to raise the dose of the Lamictal I’m taking.  It may knock the edge off.

So what do you do when a doctor that you love and trust, says they are stuck with you?

I feel certain we’ll work out something.  But I can’t imagine leaving Dr. D.  When we moved to California for a couple of years and I had to see someone there…Oh My Goodness…that woman was a quack.  She saw people in a group.  Uh, not ok.  And she prescribed Seroquel for me, just took me off of things that were working….Here this is better, it works for both the ups and downs of bi-polar disorder.  Yeah, it made me sleep ALL THE TIME…so no I wasn’t manic or depressed, I was doped out of my brain!  And she didn’t want to take me off of it!  Not cool.  I asked to see someone else in that group..he was better, but not D.

I have much more to talk about.

Like, how I’m not dealing that well with being bed bound!  How my headaches are worse.  How I hate being such a burden.  How I don’t like my marriage like this.  How to keep a caregiver from burning out, or letting you become their everything?

Let me share the name of my new possible diagnosis….This is not definite, but it’s a mouth full….Intercranial Hypertension with Spontaneous Cerbrospinal Fluid Leaks.  Ummm, yeah, what they said.

Still seeing Dr. Gray on the 17th, have asked for something more to help with my headaches for the next 10 days!

Still drawing, and creating something every day.

need to scan some things and put a post on my other blog.  (think you’ll like my NeoPopRealism style self portrait…I think she’s a hoot)

I’m not sleeping well.  Look, it’s 5am! Still haven’t been to sleep.  I have to wait until I’m so exhausted, nothing could keep me from falling asleep, then I can sleep.  Why?  I’m scared to go to sleep.  I’m afraid I’ll wake up feeling even worse.  Or that I’ll die in my sleep.  (this fear started after I had the drainage from my ear recently because of the infection.  I was so afraid it was CSF fluid.)  I’m really hoping this will get better after the next appointment.  Even if they can’t fix everything at once, I just want to feel better….just a little.  I’m not asking for a lot really.  It’s ok, if I never can drive again, or work, or get a foster child, or have a garden…yes I want time, but I can deal without them.  Just let me be able to do something out of bed, and not be in intense pain the whole time, or feeling like I’m going to fall down with every step.

(I actually used my walker in a store the other day, I’ve never used it out of the house before.  (I just used Stuart or the cart to help.) I was proud of myself for using it, but it was difficult, and it’s nearly impossible to back up!  Think I might try to use the store’s little scooter next time…but that will probably make me too dizzy.

So we have a few things to talk about.

I think I’ll talk about caregivers next time.  How they feel, how to help them, and how we as patients feel because we have to use them.  (I’m trying to get Stuart to write a guest post about this, and would love is anyone else would be interested.  If it would help, I could come up with a list of questions.)  Perhaps, this will need to be a series, not just the next post.

 

OK, I’ve stopped my ramble for tonight/this morning.  Feel free to tell me to never post while being this sleep deprived again!

My health and kindness be with you always.

wendy