Author: Wendy

I'm taking a journey learning to live a mindful and happy life, while living with Chronic Illnesses. I'm a bit of an idealist. I want everyone to be happy and think everyone should want the same for others. I don’t understand mean people. I cry easily and laugh often. I love cartoons, Dr. Who, and my wonderful husband...not in that order!

Oh Poop! Side effects are they worth it?

On By WendyIn Chronic Illness20 Comments
image from clipartfest.com

On January 25th I wrote about A Visit to the Migraine Doctor, in it I mentioned that my doctor was putting me on a new drug.  Diamox.  I haven’t been tolerating this medication very well.  I haven’t been posting as much as usual, because of some of the side effects.

After being put on this medication I started having extreme GI distress.  I had acid reflux, nausea, and diarrhea.  These became increasingly worse.  The acid reflux and nausea made it impossible to get a good night’s sleep.  The diarrhea was worse, there were times I didn’t make it to the bathroom.  I had no warning.  As I started a new diet about the time I was put on Diamox I thought the GI distress was caused by the diet.  I was wrong.  I ceased the diet and still the GI distress continued.

My cognitive dysfunction has been much worse than normal.  This is the main reason I haven’t been writing.  I just haven’t been able to think straight enough to process my thoughts.

image from http://www.aids.gov

There are times you have to decide if a medication’s benefits out weigh the side effects, as this medication did not reduce my headaches (if anything they have been worse) I’d say it’s not worth it.  So I’m officially off this medication now.  I don’t know how long it will take for me to get back in the grove of things here, but I’m happy things are getting back to my normal.

There are medications that cause minor side effects and I’ve decided to stay on them because they were helping more than the side effects were causing me trouble.  For example, Topamax changed my taste of certain foods.  This was minor when it helped my headaches.  (Unfortunately it isn’t helping my headaches like it used to, so we are working hard to find a new one that does.)

Until we can find a new drug that helps my headaches I’m stuck.  When I have a migraine, which is most of the time, I can’t think straight.  When I was on Diamox my thinking was even more muddled.  Now that I’m off it, I hope some of my cognitive function is returning.  I always have a bit of cognition problems due to Migraines and Meniere’s.  Speaking of cognitive disfunction, I am having a hard time writing this post.  I keep reading it over and over and forget what I just read.  I’ve been trying hard to keep up with other’s blogs but my memory is not working as it should, so I’m not absorbing the information a lot of the time.  I’m confused.  I can’t think straight, even more than normal.  I stopped Diamox a couple of weeks ago, I’m feeling much better, but my brain is still catching up, I think.

You must decide for yourself if the side effects of a medication is worth the benefits.  Of course, this drug was not worth it, as it didn’t have any benefits.  However, even if it had been beneficial I feel the side effects would not have been worth it.  Trade less migraines for extreme GI issues and brain fog?  I can’t do it.

Are there medications you are having side effects from but you still feel it’s worth taking?

Have you stopped a drug because of side effects even if it helps?

 

Mindfulness Monday – Pema Chödrön

On By WendyIn Chronic Illness, Mindfulness10 Comments

nature-lady-color-cropped

 

“Rather than letting our negativity get the better of us,
we could acknowledge that right now we feel like a piece of shit
and not be squeamish about taking a good look.”

― Pema Chödrön, When Things Fall Apart: Heart Advice for Difficult Times

 

“Only to the extent that we expose ourselves over and over to annihilation can that which is indestructible in us be found.”

― Pema Chödrön

Rare Disease Day, I have a rare disease.

On By WendyIn Chronic Illness9 Comments
rare-disease-day
rarediseaseday.us

Today is Rare Disease Day. “Any disease, disorder, illness, or condition affecting fewer than 200,000 people in the United States is considered rare.” (rarediseaseday.us) There are more than 7000 rare diseases and disorders in the US. That comes to over 30 million people who have a rare disease. It’s not so rare huh?
Some of you may know that Ménière’s Disease is a Rare Disease, it is listed on the National Organization for Rare Diseases (NORD) registry.  The information they have listed about Ménière’s  Disease is interesting.  Please go check it out.  Even I learned a thing or two.  🙂

Benign paroxysmal position vertigo (BPPV) is also on the Rare Disease registry.  You can read more about it here.  I’m very impressed by the information available on NORD, if you have a rare disease, or want to know more about one, I urge you to look it up on the National Organization for Rare Diseases (NORD) site.

Having a rare disease normally means that there is little known about the disease, we go from doctor to doctor hoping to find out more.  Hoping to find help.  More research is needed for all rare diseases.  Contact your local representative to speak out for your disease and make sure more research is provided.  You can find out how to contact your representative here.

“NORD’s Rare Disease Database provides brief introductions for patients and their families to more than 1,200 rare diseases. This is not a comprehensive database since there are nearly 7,000 diseases considered rare in the U.S.”  *from NORD website

 

Do you have a rare disease?  Curious, have you ever contacted your representative about it?

 

 

 

Mindfulness Monday – Lao Tzu

On By WendyIn Chronic Illness, Mindfulness5 Comments

tulip-magnolia

“When you realize there is nothing lacking,
the world belongs to you.”

~Lao Tzu

 

“Nature does not hurry, yet everything is accomplished.”

~Lao Tzu

 

 

*all images on Picnic With Ants created by W. Holcombe unless otherwise noted.  Please do not use without permission.

Mindfulness Monday – Life

On By WendyIn Chronic Illness, Mindfulness18 Comments

flower-computer-painting

“We must be willing to let go of the life we have planned,
so as to have the life that is waiting for us.”

~ E.M. Forster

 

“Rather than being disheartened by the uncertainty of life,
what if we accepted it and relaxed into it?
What if we said,
‘Yes this is the way it is;
this is what it meant so be human,’
and decided to sit and down and enjoy the ride?”

~Pema Chödrön

 

*all artwork on Picnic with Ants created by W. Holcombe unless otherwise noted.

 

 

Are you a Mary or a Debbie?

On By WendyIn Chronic Illness7 Comments

Today I’m happy to introduce a new friend, Kim, from her blog, I Tripped Over a Stone.  She is an amazing writer; I am so pleased she decided to write a little post for us.  Please jump over to her blog and check her out, you’ll be so glad you did.  

Hello my name is Kim. Wendy asked me to scoot over here from my blog and do a guest post for her. I happily accepted. You see, I consider Wendy a friend. We are similar in many ways, besides having invisible illnesses, we have the same kind of humor. I have no doubt we will one day meet in person.

I have Fibromyalgia Syndrome, Wendy has Meniere’s Disease. These are classified as invisible illnesses and both are chronic conditions. Neither is really a great one to have. Would you want want vertigo, inner issues and migraines or would you pick constant pain, difficulty sleeping and cognitive difficulties? Choose. Yes, choose right now! Fibromyalgia Syndrome or Meniere’s Disease?

Now that you have picked your illness, how would you handle this new, life altering, invisible illness? Would YOUR life be over? The answer is yes. Your life, as you know it, will be over. You will have to say goodbye to the old you and hello to this new person who feels like crap most of the time and is a shell of who you worked so hard to become. You will probably lose your job, most of your friends, and some of your family members. Since your illness is invisible, you will be deemed unreliable even though its your health that’s unreliable, not you. You will be scoffed at for being on any form of assistance and called a liar because you do not look sick. Welcome to your new life.
Now you get to choose again! Are you going to be a Debbie Downer or a  Little Miss Mary Sunshine? People usually pick one or the other. Debbie and her self-defeating behavior; why try when nothing will change, there is nothing left for me in this life, I am of no use. Now Little Miss Mary Sunshine knows everything and it is making a brand new life, finding the right doctors, support groups, and will forge ahead! These are the personas we sometimes show others. In reality, we are sick and tired of being sick and tired. We just want the pain, the vertigo, the migraine…to end. A cure would be great! Until then, we take our medication. Sometimes we will go to extremes and have surgical procedures, with no guarantee of a positive outcome. And we read everything; news of every new pill, treatment, therapy, hoping we will stumble upon our way out of this illness. So who is the persona you show to the outside world, Debbie or Mary?

kim-post-1

Ok, you can be yourself again. I am am not very found of Debbie or Mary but in a pinch I will become one or the other. I’m never quite certain who I will pick, it depends on the circumstance. It was not fair of me to expect you  to choose either. But life is not always fair!

In closing, Wendy and I will continue on our individual health journeys with a little help from each other and you! Being able to tell our stories and allow people to see us is quite terrifying at times. But somehow our paths have led us to this place and we are so very glad it did. We have been given a gift! A place to share our lives and the ability to meet such wonderful and endearing readers of our posts.

I thank you, Wendy. I enjoyed being your guest today.

kim-post-2~Kim

Visit me at I Tripped Over a Stone.  itrippedoverastone.com

Mindfulness Monday – Love

On By WendyIn Chronic Illness, Mindfulness6 Comments

hearts-black-and-white

 

What is the difference between “I like you”
and “I love you”?

Beautifully answered by Buddha:
“When you like a flower, you just pluck it.
But when you love a flower, you water it daily.”

 

“The most precious gift we can offer anyone is our attention.
When mindfulness embraces those we love,
they will bloom like flowers.”

~Thich Nhat Hanh

 

All artwork shown on Picnic with Ants created by W. Holcombe, unless otherwise specified.  All rights reserved.  Please don’t use without permission.

Mindfulness Monday – Change

On By WendyIn Chronic Illness, Mindfulness6 Comments

ice-sicle
photo by S. Holcombe, rights reserved.

“If you change the way you look at things,
the things you look at change.”

~Wayne Dyer

 

“The only way to make sense out of change
is to plunge into it,
more with it,
and join the dance.”

~Alan Watts

Mindfulness Monday – Moments

On By WendyIn Chronic Illness, Mindfulness6 Comments
butterfly-color
Butterfly by W. Holcombe.  all rights reserved

“In this moment, there is plenty of time.
In this moment, you are precisely as you should be.
In this moment, there is infinite possibility.”

~Victoria Moran

“The best way to capture moments is to pay attention.
This is how we cultivate mindfulness.
Mindfulness means being awake.
It means knowing what you are doing.”

~Jon Kabat-Zinn

 

A visit to the Migraine Doctor

On By WendyIn Chronic Illness, Headaches, Migraines16 Comments
headache
ocular migraine, by w. holcombe

You may recall from my last visit to the migraine doc  (a neurologist who specializes in headaches) that she’s tried just about everything and suggested that I look into studies.  Well, she hasn’t given up.

I saw her last week and it was a long visit.  I am always impressed when I go there that she never seems to be in a hurry.  I never feel like she is rushed to get to the next patient.  It’s amazing really, this is a doctor who is backed up over 3 months for an appointment, you know she’s busy.  During our visit, I was having slow vertigo, which made it difficult for me to follow everything she was saying.  I’m still asking Stuart some things, unfortunately he doesn’t seem to have much of a memory.  He must have been worried about me.  I did understand most of the visit, there are just little things I remember her saying that I wish I remembered.  Like she said that Melatonin was good for something other than sleep, but we can’t remember what…….well I just looked it up and it can help with a bunch of things, including migraines.  Who knew?  I don’t know if that’s what she said, but I’ll keep taking it.  It helps fall asleep anyway.

She is concerned that some of my migraines may be caused because my CSF (Cerebrospinal Fluid) is too high again.  I have fluctuating CSF, it tends to run high.  The migraine medications that I’m on help keep it lowered.  She felt that we need to put me on a drug that will increase this effect.  So I was taken off Topamax and put on Diamox.  I’ve been on Diamox  before, my CSF pressure did not remain stable on it either, we’ll see what happens this time.

She did look in my eyes, it was difficult because I had a bit of nystagmus going on at the time so my eyes were jumping, but she saw that it was bulging a little bit back there, a sure sign that my pressure is up.

The weird things is, if I have high CSF I should have a worse headache when I lie down.  Sometimes I have a bad headache when I wake up but often I don’t.  When I have a bad headache, it doesn’t get better when I lie down.  hmmmm.  Makes me wonder.  But then there’s the eye thing, she did say it was a slight bulge.  Well I’m just not convinced and I don’t want this drug to make my pressure go too low.  It’s a very strong diuretic.  I’m peeing a lot, but my body will get used to it I’m sure.  I’m a little more light headed, but that could just be me, but it could be the drug.   I feel very confused, this one has bothered me a lot, but it says it will go away shortly.  If it doesn’t I won’t be on this drug long.  I do not like being so forgetful.   I was angry at Stuart yesterday and couldn’t remember why!!  I don’t get angry at him often, you’d think I’d remember why I was mad at him.  I think this drug is making me grumpy, or maybe that’s just me.  I also think it’s reducing my appetite, as least that would be a good thing.

To sum up, I’m on a new drug (or back on an old drug).  I’m not sure about it.  I’m keeping an open mind though.  I’m keeping a journal of my headaches as always, I’m adding in other side effects I’m feeling and paying close attention to all.  I go back to the migraine doc in 2 months.

I can only say: Chronic migraines and New Daily Persistent Headaches suck.