Tag: Meniere’s Disease

I was wrong…A Meniere’s Attack.

On By WendyIn Chronic Illness17 Comments
Vertigo - http://www.comicvine.com/vertigo/29-3561/

I stated at the end of my last post that I thought the patches worked this time, and I was better.  Yes, my hearing is still down, and I’ve been having headaches, but I hadn’t been having vertigo.

That all changed Wednesday.

I woke up feeling like I was catching a cold.  My ears and nose were all stuffy, my throat was scratchy, the tinnitus was a bit loud, and well,  I just didn’t feel good.

I went down stairs and had some breakfast, took my morning meds, and still, just didn’t feel good.  Kind of icky.

I decided to jump on the computer, answer some emails, do a post….  I was in the middle of answering an email when it hit me…the world started to move.  (Sorry Susanna, I promise I’ll finish my email to you soon.)

I’ve described one of my Meniere’s attacks before, however, since this is the month for National Health Bloggers Posting Month, and NaBloPoMo, I thought I’d go over it for anyone who might be reading for the first time.

The last time I told about an attack, someone said it was the most terrifying thing they’d ever read….this attack was worse…much worse.  (fortunately, this time Stuart was close by, so I didn’t have that panic of being alone and not being able to care for myself.  I’m thinking I should do something so I’m prepared if this happens when I’m alone…an emergency kit type of thing….a bucket with, emergency meds, wash cloths….)

As I mentioned I was answering an email, and the world moved….I slumped down on the couch and grabbed for my vial with Valium and Phenergan (for those who might not know, Valium helps control vertigo, and Phenergan is for nausea).  Soon I could tell this was getting worse, so I also had a Phenergan suppository. (They often work faster, and you won’t throw it up.)

It was getting worse, I had the hot flush that’s a tell-tell sign that things are going downhill, fast.  Or, rather, things will probably be coming up soon.

Every time this happens to me it terrifies me.  I’m always afraid it won’t stop.  That I will continue to have this horrible vertigo, forever….  I’m so out of control, and so very, very sick.  If someone wanted to torture someone, just make them go through one of these attacks, I promise I would tell anyone anything they wanted to know.

I couldn’t focus my eyes, I normally try to have a focal point and do stress reduction techniques, but I couldn’t keep the point in focus, and things were getting worse, the vent in the ceiling began to move across the ceiling, the TV was tilting…..  and I had to go to the bathroom, fast!  Not to throw up…if you get my drift.  It was a rough trip to the bathroom, and when I got back, it got worse.  The world started spinning out of control.  All I could do was hang on and ride it out…(that makes it sound much easier than it is…it’s hard…very, very hard.)

I started throwing up.  Each time I wretched, I wet myself.  This is something that has never happened before.  (I have had a little pee come out before, because of the intense pressure from throwing up…but not like this.)  I was lying in a pool of my own urine.  So horrified by what was happening to me, so humiliated.  At one point vomit came out of my nose…if this has ever happened to you..I’m so very sorry.  Oh how it burns, and you can’t get the smell out.

This attack was different from any I’ve had before, things would start to settle down, then they’d start spinning again…about 2 1/2 hours after the start, I feel asleep.  That has always meant that it’s over.  But within minutes I was awake again, with the dry heaves were even worse.  Finally, things stopped spinning after about an hour later.  However, I was still sick to my stomach.  The nausea was horrible, and it burned so bad.  My head hurt so much, but I was afraid to take anything for it, for fear it would make my stomach feel worse.  Again, I had dry heaves, but this was thankfully the last time.  Then the diarrhea came again….and again.  (this does not normally happen, I do often have it at the beginning, but not after the world stops spinning.)

Through out all of this, I was hot, then I was freezing, hot, cold, hot, cold.  I would shiver from cold one moment the next I’d be sweating profusely from the heat.

I rested for a while, absolutely exhausted, but my head hurt so much I couldn’t sleep.  I drank a lot, thinking the headache may be worse because I was dehydrated.  (after all, I’d been throwing up way past the point of anything being in my stomach, and had diarrhea 3 times.)  My head still hurt.  I ate a little…and just rested.  Finally, I felt I could take something for my head, and it helped, but it didn’t go away.  I thought I could finally sleep, then my muscles started to cramp up, my back, my stomach, my whole body had been through so much, my muscles were fighting back.  I just wanted to sleep.  I took a pain pill, and rested.

Again, I’m so very grateful that I had Stuart here to help me.  This was a very scary day, and he was there by my side doing everything he could to make it easier.  It makes me cry just to think about how much he must love me to do these things, and to reassure me over and over that he doesn’t mind….”don’t worry, I’ll clean it up.”  I cry and say I’m sorry, he reassures me…it’s ok, there’s nothing to be sorry about.  I know seeing me like that is also terrifying for him.  He does all he can, but he can’t stop it, we have no control over what is happening, and I’m in so much pain.  The throwing up until all you do is gag and it feels like my body is trying to turn itself inside out through my mouth…it hurts….oh…it hurts.  Instead of showing this, he sits by me and says calming words over and over, like Calm, Peace, Love….the repetition and concentrating on the words, what they mean, it helps.  Sometimes it helps more than other times, but it doesn’t hurt.

Often during these attacks, I think…I just want to die.  I hate my life.  This is not a life.

This time, I started having those thoughts, but I stopped, and kept saying, I accept this part of me.  I still love myself.  I have this disease that randomly punishes me for no reason, but that doesn’t mean I’m bad.   It is a part of me.  It’s not what I am.

I can’t say this would work if I had to go through this every day…or even multiple times a week (like I was doing in December and January).  That was a dark time.  I’d like to think I could handle it better now.  But, I’m just not sure.

So, I guess I was wrong.  The last set of patches may not have worked.  I just don’t know what to think now.  Things were so good after the treatment the end of January, why isn’t it working now?  I need to have a heart to heart with my doctors and see what my choices are.  We may have to reevaluate our plan of action.

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.

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.

November is NaBloPoMo Month.

On By WendyIn Chronic Illness4 Comments

This is the month to do so many things, every day for the month…and celebrate Thanksgiving too…how will I get it all done?

First, I will be participating in NaBloPoMo this month.  Yes, you will probably get very tired of me, and I’ll probably run out of things to say.   I can hear all of you right now…”YOU, run out of things to say?”, while rolling on the floor laughing!

Later today, I’ll be sharing a great list written by Allison at Taking Life For a Spin  of things you really shouldn’t say to people with a chronic health problems.  I’ll be looking forward to hearing what everyone else may want to add.

I’ve also just joined 

National Health Blogging Month by Wego Health gives writers prompts for each day, some days I’ll probably use their prompts, other days I’ll probably just be posting about what I think is important.  #NHBM allows for 2 free posting days.  Days when you just can’t post.  That’s a good thing for people who have a chronic condition.  As we all know, some days we just can’t.

On my other blog, Create To Heal, I’ll also be participating in Art Every Day Month over at Creative Every Day…this is a more laid back challenge.  It’s a challenge to simply Create More, if you happen to miss a day, don’t give up…this is incentive, not a contest.  This challenge also doesn’t require a post every day, you can post once a week, what you’ve been doing, just what ever feels right, and what ever you can do.  I like this, but I plan to post every day.  After all, I’ve been trying hard to create something every day, may as well let you see it day by day.

If you’d like to be involved in NaBloPoMo, just go to this link http://nablopomo.blogher.com/ and follow the directions.  You can add your blog until November 5th, but you must have posted every day in the month of November to be eligible for the prizes.

But why November, I know that all of this is a take off from NaNoWriMo, where writers are challenged to write a novel in a month, and it started in November.  However, again I ask, why November?  I think it’s going to be a tough month to do something like this.  Every Day.  At the beginning of the holiday season.

Granted, we don’t do much for Thanksgiving, and I don’t think Christmas celebrations will be as busy this year.  My hearing problems are prohibiting me from going to many parties.

To wrap it up then, I think this should be done during a really boring month, like…um…August, September…something without a major holiday.

This is going to be a challenge.  As I said before, there are days when we just can’t…..however,

I’m going to try.

wish me luck, and please, let me know if there is something you want to know more about.

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

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.

Am I a Patient?

On By WendyIn Chronic Illness, Meniere's Disease8 Comments

Sharon at After Gadget, is hosting the PFAM carnival this time.  She posed the question:

What makes someone a patient? When, and in what contexts, do you think of yourself as a patient, and when do you not?

I thought, and thought, and thought….and I came up with…First –

What makes someone a patient?  So I looked it up. (I looked it up in a few sources and came up with generally the same answer, but I liked Wikipedia’s answer the  best.   The original meaning of the word patient is “one who suffers”.  The meaning today” is any recipient of healthcare services.”

With this in mind: Yes, I am a Patient.  According to both definitions.

Second part:  When, and in what contexts, do you think of yourself as a patient, and when do you not?

For that I decided….well, it depends.  I know this is a very insightful answer, so I will elaborate.  Bear with me, I ramble when thinking about things like this…heck, if you read this blog, you know I ramble often.  : )

A lot of the time I do consider myself a patient.  My treatments aren’t over, I still have plenty of doctor appointments, I still take a ton of medication, I’m still dependent on someone else, so yes I’m a patient.  I had a lot of trouble with my husband being my caregiver for a while.  I felt like I was no longer his wife, I was his patient.  What could I do for him?  He has been everything to me.  He not only provides for us, he does the housework, the meals, bathes me, helps me with personal hygiene.  Many…many times he’s held my head and calmed me when I had vertigo for hours and just kept throwing up.  He’s put in many suppositories, and every time I feel horrible about it, and I cry.  I often feel like we’ve changed, I’m now his patient.  But I’m more than that..

Often, we will have touching moments together, we’ll curl up and snuggle, he’ll tell me how hot I am…just today he was helping me and brushed my breast, and said, “you know I only did it that way so I could touch your boob.”  He makes light of my illness, not in a bad way, he doesn’t dismiss it, but he never let’s it get in the way of being my husband first.  He’s simply thankful he can be here for me, just as I would be for him.  We enjoy the wife/husband/friend relationship as much as we can.  He NEVER lets me forget that I’m more to him than someone he has to take care of.

Yes, I am a patient.  But I’m so much more than that!

A Wife.  A Friend.  An Advocate.  A mom to my Furry Babies, Sandy and Max.

And I’m an artist!

Free

Sometimes I want to shout loud enough for all the world to hear:

I AM MORE THAN MY ILLNESS!

But Sharon asked more than that.  She asked how I refer to myself.  That depends on who I’m talking to.

If I’m meeting someone only Stuart knows, I refer to myself as Stuart’s wife.  If they ask what I do, Stuart usually says, “She’s an artist.”  He’s proud of me.  But if he doesn’t, I usually do say I’m an artist.  If the conversation persist for a long time, I may say that I’m not a professional artist right now due to my health.  (If you’d like to see some of my work, see my other blog: Create to Heal.)

If I’m talking to a friend, I’m just Wendy. However, recently I felt I had to explain a few things to some of my family and friends.  People just didn’t seem to get it.  I was told I “deserved better”, and I should “find new doctors”, and “that insanity is trying the same thing over and over and expecting different results”.  The treatment I’m undergoing has given me different results.  It usually works (on at least some of my symptoms), at least for a little while, once it worked for almost 5 months…I want to get back to that.

So I wrote a detailed explanation to them, letting them know that I have a CHRONIC Illness, it is not going away.   I explained exactly what Meniere’s is, and how I’m in the advanced stages of bi-lateral Meniere’s.  I know I’ve explained it before, but people seem to think it will go away.

I may not deserve this, but who does?  No one I’ve ever met.  I explained that I have some of the best doctors in the world helping me, doing much more to try to help me with this disease than most doctors would.  Well, you don’t need to hear the whole note.  The point is, I felt I had to point out that I am a patient.  I didn’t use those words, though sometimes I do.  I’m a Meniere’s patient.

Often when I meet people for the first time, I’ll try to hear them or read their lips before I announce I’m hearing impaired.  Usually, I have to say, “I’m sorry I’m hearing impaired, can you look straight at me when you talk and talk slowly so I can understand you?”  That usually works, but it’s funny to me how fast people forget, they try to do what I ask, then they will look away, and forget all about it.

It’s hard in hospitals or doctor’s offices because they aren’t supposed to talk softly to insure the patient’s privacy.  So I say very loudly, so they know I need to hear them, that I have Meniere’s and I need you to talk loudly, look at me…..  Often, hubby has to translate.

When I’m talking to or about some of my Chronic Illness friends, that how I refer to both.  I’m a chronic illness blogger, I have friends with a chronic illness….we don’t all have the same thing, but we are kindred spirits just the same.   We get it.

I’m not sure I really answered Sharon’s questions, but it made me think.

My conclusion?

In my heart, I’m a wife first, because my husband is so very dear to me.  I’m mommy to Sandy and Max…my furry babies…again because they are so dear to me. The rests are almost tied. I’m a friend, I’m a blogger, I’m an advocate for my illnesses, and for myself….and last but certainly not least I’m an artist.

I’m sure some would give me even more titles, but these will do for now.

Please make sure and stop by Sharon’s blog, more than once her post have moved me, made me cry, and made me think!

The PFAM carnival will be up on her blog After Gadget, on Wednesday October 26th.  Check it out, and think….How do you define yourself?

Good day.

On By WendyIn Chronic Illness, Meniere's Disease8 Comments

Stuart’s interview went well.  He is very interested in this job, says it’s like a previous job he had that was his favorite!  He has to meet a couple more people, but it sounds very promising.

I can hear in my left ear!  Not clearly…a bit distorted and still low, but I can hear what Stuart says without looking at him (if he’s close).  It’s a little hypersensitive, but it’s a great sign!

Less sore every day, but still sore.

Just had to share!

Think we’re going to watch a movie now…with captions…but also with sound…let’s see what I can hear?

 

See life changes every day.

One step at a time.

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.