Feeling Stuck

I’ve been trying to write for a long time, but the words just haven’t come.  There are a couple of topics I want to write about, but they are sensitive, and they may offend some people who read my blog.  It’s a true dilemma.  I want to be true to myself and my readers, but I don’t want to hurt anyone.  So I feel stuck.

My brain is also just not working like it used to, I’m thinking that having a moderate to severe headache for almost 2 years has something to do with that.  They’ve just been getting worse.  I had another visit to the migraine doctor and she changed up the Diamox; she had to, it was driving me crazy with all the side effects and I wasn’t going to take it anymore.  She put me on Methazolamide.  It’s in the same family as Diamox but it is supposed to be more easily tolerated.  So far I am tolerating it, but it is doing nothing for my headaches.  I feel like she doesn’t take me seriously since most of my migraines are moderate in intensity.  A moderate headache  (between a 4 and 6 on the 0 – 10 scale) every day can be pretty debilitating.  At least I do have a few hours here and there where my headache is mild, but it’s still there, all the time.  My brain is mush.

I started to order supplements that are supposed to help with migraines, but I’m seeing the functional medicine doctor next week, I’m sure they will suggest supplements.  So, it will wait until the 18th.  I’m excited about going to the Functional Medicine doctor.  I’ll write all about it after my visit.  I was supposed to go a while back but we thought we might be moving and didn’t want to get started with another doctor.  But it looks like we’ll be here for a while, so let’s get started.

I was reading on the American Migraine Foundation site and the University of Maryland site about supplements that help with migraines. (be sure to check out those sites for information on supplements for migraines)  I’ve already tried looking for triggers in foods and everything else I can think of.  The only things that really trigger a headache for me is the weather, and strong smells.  Sometimes bright lights can do it.  So I’m searching for alternative treatments.  I’ve tried acupuncture and chiropractic, they didn’t work for me.  I know that magnesium can help with migraines but I found it caused diarrhea.  My migraine doctor suggested a different type of magnesium that is easier to absorb, (magnesium glycinate or gluconate).  Who knew there were so many different types of magnesium, I counted 7 yesterday when I was researching it.  How is one supposed to know what you need?

I decided to wait on starting the new magnesium until I found out if this medicine she gave me worked.  (I already take magnesium, but it’s the kind that upsets your tummy so I don’t think I’m taking a therapeutic dose.)  She still says to give this new medication a month at the highest dose.  I hate to say it, but I’m ready to look for something else.  I just don’t think the medications is going to help, so far my headaches have been more severe.  I’ve been on the medication for about a month now, I’ve been on the highest dose for a week now.  It’s a very hard medicine for me to keep up with .  I have to take it 3 times a day.  It’s the only med that I need to take in the middle of the day and I can’t remember it.  (I haven’t missed a dose, I just don’t feel that I’ve timed it out well) I installed a timer on my phone, hopefully that will help, as long as my phone is close enough to hear.  Great thing about this medication, it has greatly reduced my appetite.  I’m losing weight again, finally, after so much trying.  I’m very excited about this.  Now if I can keep it off when I go off the medication.

The thought of adding more supplements or medications to my regime is overwhelming.  I take so many pills, surely I don’t need all of them.  But I’m not one to just go off of medications.  I will go over all of them with the Functional Medicine doctor and we will see what he has to say.

“Functional Medicine is the deepest and most powerful approach to prevention and reversal of disease that I have encountered. It systematically discovers and addresses the root causes of disease and uses sophisticated treatments that lead to dramatically improved outcomes”  ~ Robert Sheeler MD, Editor Emeritus, Mayo Clinic Heath Letter

If you are curious about where I’m going, then please check it out.  Optimal Health Medicine Center

Since I’m giving an update on me I may as well tell you about my vertigo.  I’ve been having a lot of short spurts of vertigo.  It may be migraine related instead of Meniere’s, but it is really hard to tell at this stage.  I’ve fallen twice in the past 2 weeks.  Luckily I remember to just crumple myself on the floor instead of falling hard.  Both times I went down on my artificial hip.  Luckily, I didn’t hurt myself at all.  Think I need to use my walker at home more often.

So, I’ve been rambling.  At least I’m writing, right?  Today I just had to get out what has been going on recently.  Perhaps soon I’ll write about the other things on my mind.  I really want to keep my blog open and honest and not writing about these things that are going on in my life, feels dishonest.  Perhaps I’ll write about easier things first.  maybe.

Thank you all for following me.  I’m glad you like Mindfulness Monday.  I’m going to try to get out more posts, I promise.

What would you do?  If you thought a topic might cause some upheaval, would you still write about it?  It isn’t anything that everyone in my family doesn’t know about, they just don’t believe it all.  Then the other topic is about medical marijuana….since it isn’t legal in my state, I’m not sure I should write about it.

 

Rare Disease Day, I have a rare disease.

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?

 

 

 

Are you a Mary or a Debbie?

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

#MyMightyMonth – A day in my life

I just got an email from The Mighty, they are starting challenges to promote self-care.  The first 30-day challenge is to journal.  I thought, what better way to keep me posting and keep my creative juices flowing?  I may not post every day, this is not that kind of challenge, I do not feel pressured to post every day, it’s just a challenge to get you started journaling, but I plan on posting often during the month of January.  Most of these won’t be my normal post, these are going to be journal entries.  You will be able to step in my life for a month and see what Wendy is up to.  You may get very, very bored, but you may find out a few things about me that you never knew.  You may also find out how I deal with some of my trials, or how I don’t deal with them.  You might find out just how long it takes me to do things.  Some days, you might find out that I don’t do much of anything.  I think all of this will be good, for me, and hopefully for you and this blog.  I have a lot of new followers who don’t know a lot about me, this is a great opportunity for them to find out all about ME.  🙂

It’s not quite January yet, but I thought I’d write about my day today, it was much more eventful than my normal day.

We had planned to go to Ikea today to get hubby a desk, he is in dire need of one.  I’m very tired of seeing his computer on the dining room table.  Unfortunately, when he looked at his coupon he found it expired and he didn’t want to spend that much money right now.  Truthfully, I’m not sure he’s completely decided that’s the desk he wants.

I have to admit this put my entire day off game.  I was really looking forward to going out to Ikea and walking around that big store and getting some exercise.  It’s always a bit of a scare doing something like that, but after being closed up in the house so much, it is a thrill for me to be able to do anything out of the house.  Even if I might pay for it later.  Needless to say, I was upset, so we decided we needed to go somewhere.  We decided to go to the mall.  I have a gift certificate, what better time to use it?   Well today was the day that everyone decided to use their gift certificates, or take presents back, or shop after Christmas sales, or something, because there were NO parking places at the mall.   I couldn’t see fighting all the people, and me with my walker, no way.

We decided to go by the library.  I had a book on hold and thought we’d pick it up.  We were waiting because I have another book coming from another library, but it was something to do!  It made me happy, and Stuart found 2 books, that made him happy too!

After the library, I admitted I still had some energy and wanted to walk.  We discussed going to the park, then I asked if we would be driving close to Michaels, because I knew hubby needed glue for models.  We were driving right by there so we decided to check and see if maybe we could get in there.  It was great, there’s a handicapped space on the side and 3 were open!  Bam! right by the door.  We were in.  And it really wasn’t that crowded once we were inside.  We decided to just browse.   I’ve been looking for something I can do with my hands.  I used to like doing cross stitch when I was younger, but what do you do with that kind of stuff when you are finished with it?  I have a lot of paintings that I have no where to put now.  Anyone want a painting?  So, I’ve been thinking about crochet, but I’m not very good at it, I just can’t keep my tension correct.  I have this Knifty Knitter thing that is pretty cool.  It’s a tool you use to knit with.  You aren’t really knitting in the traditional sense, but it looks neat when you are finished.  I decided to work on that again and bought some yarn.  Unfortunately, when I got home I found the yarn is too thin, I’ll have to get thicker yarn for this to look right.  After that I’ll be making things left and right.  hahaha   Working with yarn is good for tactile sensations and fine motor skills.

 

sketches10-8

by w. holcombe

I also got a book called Zendoodle.  I love this kind of drawing. (please I don’t want a debate about Zentangles here)  So far, I’ve doodled just a little, but I know I’m going to be doodling more.  I used to do this a lot, it’s very calming, and it is good for my spacial relations.

I took Valium today when we left as a precaution to try to prevent me from having vertigo.  I’ve been having it a lot recently.  When we got home today, I started playing with the yarn, and shortly thereafter, the vertigo started.  I didn’t get much done today after that.  It wasn’t a violent bout of vertigo, but it was certainly not slow.   I felt sick, but luckily I didn’t throw up.

The vertigo has been starting and stopping over and over for the rest of the evening.

That was my day today.  Hubby took the week off work.  I think this is a dumb time to take off work, but I didn’t think about that when he asked me about thinking this week off.  There are just way too many other people off work doing things, there’s too much traffic, too many people.  You can’t do anything.  And we couldn’t take a trip.  Heck, who wants to take a trip around Christmas, unless you are visiting family, it’s too crowded.

I’d rather stay home and enjoy the last days of my Christmas tree.

Tomorrow I’ll pay for today a bit.  I’ll need to take it slow because I did so much, but I wouldn’t change a thing.  I had fun, and that’s important.  Oh, tomorrow I have my yearly physical, so much for totally resting.

If you’d like to take The Mighty’s 30-Day Challenge go to their Facebook page and check it out. 

Meniere’s Disease Update

menieres-drunk-cartoon

cartoon source here

Over on Hearing Health and Technology Matters’ Dizziness Depot, Alan Desmond has been discussing Meniere’s Disease.  He published a 10 part series in 2012 on this subject but decided it was time for an update.  No it’s not going to take 10 parts.  Maybe half as many.  🙂

The first part discusses the use of Betahistine as a treatment.  Meniere’s Update #1  Betahistine.  Betahistine is frequently used in the UK but is not approved by the FDA for use in the US. There has been one important study that has shown that while harmless Betahistine it probably does little to treat Meniere’s.

The second part of the series focuses on Diet and Diuretics. There is a lot of good information in this section.  In the summary Desmond states “it appears the general sentiment is that it (a low sodium diet and diuretics) might help and it will do no harm.”

Part 3 discusses the use of the Meniette Device.  I had a guest write about her experience with the Meniette device, you can read about it here.  Desmond summarizes his write up saying, “the evidence keeps building that the Meniett device is a plausible idea, with little evidence of clinical effectiveness.”

Part 4 focuses on Endolymphatic Sac Surgery.  I had Endolymphatic Sac Decompression surgery, you can read about my experience here.  I was unfamiliar with some of what Desmond discusses in this section.  I found it very interesting.  I wish I had read it before I had my surgery.  As he said in the last paragraph,  “All of the procedures discussed have similar impact on control of vertigo symptoms, and that effect is not terribly different than the natural course of Meniere’s disease in patients that do not undergo any of the mentioned procedures.”

Part 4.5 Middle Ear Muscles and Meniere’s.  This part talks about something I’ve never heard of before.  It was mentioned in part 4, and it is expanded on here.  There is a procedure where you sever certain muscles in the middle ear to control Meniere’s symptoms.  You must read this part of the update to get a clear view of this procedure.  It’s very interesting.

Part 5, discusses the Natural Course of Meniere’s Disease.  So does it help to do destructive surgeries or would it be the same as the natural course of the disease?  If you look at percentages it’s about the same.  However, if you are having vertigo on a regular basis you are pretty desperate to do anything to stop it, so when a doctor tells you that a surgery may help, well you jump on it.  I know I did.  But I also know, in my case, that it didn’t really help in the long run.  If you have Meniere’s in one ear, the chances are your symptoms will greatly reduce in 2 years and will mostly go away in 8 years.  There is a small percentage where this is not the case, these people will continue to be symptomatic.  This does not include patients who are bilateral.

Meniere’s Update Finale – In the finale Desmond discusses the proposed causes of Meniere’s, and goes into detail on the migraine variant.

I also read a new study comparing steroid injections to gentamicin injections in controlling attacks of severe dizziness, and preserving hearing loss.  It found that steroid injections are equal in controlling vertigo without causing the hearing loss that gentamicin does.   I found this study interesting.  The study doesn’t mention that you may lose your balance function with gentamicin injections, it only mentions hearing loss as the destructive measure. Regardless, if intratympanic steroid injection are equal in controlling vertigo, then one would not need to resort to gentamicin injections.  This is good news for me, as the next step we planned to take is steroid injections, if it didn’t work we were going to talk about gentamicin (again, if you’ve been reading this blog, you know we’ve discussed it before).  This study changes that thought process.  I do not see the need to even discuss gentamicin if it will not control vertigo any better than steroid injections.

I think I’m caught up on all things Meniere’s for today.  I do think now might be a good time to give an update on me.  Recently I’ve been having a lot more vertigo and over all dizziness.  As the Summer went away so did my reprieve.  I may be talking to my doctor about steroid injections soon, but right now I’m handling things okay.  As I carry on, I’ll talk more about it.

How is everyone out there doing lately?  Check in with me.  🙂

 

#HAWMC Day 28 – 5 Challenges & 5 Victories

Today is Day 28 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

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

5 Challenges5 most difficult parts of my health focus:

fear

  1. FEAR- My number one challenge is Fear.  I’m afraid of the vertigo.  Of course I’m afraid when I’m having it, but I’m constantly afraid I will have it even when I’m not.  I’m afraid of the pain, the migraine pain, the arthritis pain, all of the pain.  I’m afraid the pain will get worse and I won’t have any way to manage it.  I’m working through some stuff in my past and I’m afraid of what I’ll find out.  I’m afraid of more than I like to admit, but I’m working hard to be less afraid.
  2. Finding Doctors – I’ve had a difficult time finding doctors that treat Meniere’s Disease.  Even if they say they do, they often have little knowledge of the disease.  It’s also difficult to find a doctor who knows a lot about migraines.  It has been difficult to find good doctors to treat me.  In each field I’ve felt I’ve found a good doctor, only to be hit with the “I can’t do anything else” line soon.  It is a definite challenge to find a good doctor.
  3. Freedom taken away – Isolation, is a big challenge.  Since I can’t drive, I have to depend on my husband to get me out of the house, this is a difficult thing sometimes.  He works hard and when he is at home sometimes he has things to do here, or he just wants to relax, he doesn’t need to be taking me out all the time.  Plus I have to get over my fear of having vertigo in public before I can go out at all.   My freedom isn’t just taken away because I can’t go out, it’s also taken away at home.  Because of my illness doing certain things are not only difficult, they can be dangerous.  I can no longer cook because it’s dangerous.  I can’t take a bath or shower by myself, because it’s too dangerous.  It’s very hard for me to do any housework, sometimes because of the danger, sometimes because of the fatigue.
  4. Friends – It is a challenge to keep friends, and to make new friends.  Many of the friends I had before I became ill are not in my life as much now.  (various reasons, but let’s face it, I’m a different person.)  Making new friends is a huge challenge.  (I wrote a post about this, Making Friends?.
  5. Food – Food has been a challenge for a long time.  I have had GI (Gastrointestinal) issues for as long as I can remember.  Then I found out that I have Fructose Malabsorption, IBS, and a wheat allergy.  I have a specific diet I must follow so I won’t get sick.  This makes it hard for me to eat out, or to travel.  It’s hard to explain to people, “oh, I’m sorry I can’t eat that lovely meal you prepared”  It used to be hard to explain why I can’t eat wheat, now it’s really hard explaining why I can’t eat onions, apples, and all kinds of things.

5 small victories – list of 5 little, good things that keep you going.

wedding-love

  1. Successful marriage – This isn’t a small thing, this is a HUGE thing, but it’s what helps keep me going.  My husband and I both agree when we think about it we don’t feel that we work hard on our marriage, it’s just something that comes natural, but that isn’t exactly true.  We do work hard, it’s just something we want to do, so it doesn’t seem like work.  When I first started losing my independence it was very hard on our relationship.  I shut him out and he didn’t know how to talk to me.  We decided to see a therapist.  It was there that we learned to communicate again, and we both have a better understanding of how to deal with my illnesses.  If I could give one bit of advice to any couple going through one partner becoming ill, it would be to get a therapist. It might just make your marriage better.  I know mine is.
  2. Days I can deal with vertigo alone – this is a big victory for me.  When I start to have vertigo I panic because I never know how bad it will be.  See number 1 under challenges, and you will know, I’m afraid!  So going through a vertigo attack without help is a huge victory for me.  I’ve done it a few times, where I’ll have vertigo when hubby is at work and I don’t callv him home.  This doesn’t happen often, so this is a small victory, but it’s a big victory really, every time it happens.
  3. Making new friends – I’ve made many new friends on line.  I have a hard time meeting new people in person, but I’ve found that I can meet some wonderful people on line.  I’ve made some wonderful friends through my blog.  I have one friend that I met through my blog about 7 years ago now, our friendship has transcended the blogosphere.  We email, text, and send packages to each other.  We have called each other, but I can’t really talk on the phone.  One day I hope to meet her.  I think this is a pretty big victory, to go from losing friends to gaining such a deep friendship with someone I’ve never met in person.
  4. Getting out of the house – There are days I can fight through the fear and get out of the house with minimal distress.  When I’m having a good day we can go out and do normal things.  Those times are small victories, they get me through until the next time.  They remind me that I can do it.
  5. Diet – Eating my restrictive diet has made it so I can eat with minimal to no GI distress.  It may be challenging to eat this diet, but I think it’s a small victory, actually a big victory, to be able to eat without GI distress.

 

I wrote a similar post to this one here.

I’m participating in WEGO’s #HAWMC, if you’d like to read more posts from today please search for #HAWMC and check out WEGO’s Facebook page.  Don’t forget to Like Picnic With Ant’s Facebook Page too.  🙂

If you would like to share your story on Picnic with Ants, contact me through the contact form on my About Me – Contact Me Page.

#HAWMC Day 26 – Care Page for the Newly Diagnosed with Meniere’s

Today is Day 26 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

Time to use all your knowledge and experience as an Health Activist!
Create a “Care Page” for newly diagnosed patients.
Pull together 5 of your own blog posts that could help a newly diagnosed patient and
include 5 external resources you find helpful.

menieres-ear

I’ve written a number of blog posts that I think a person newly diagnosed with Meniere’s Disease would find interesting and, hopefully, helpful.  I think the best place to start would be a series on Meniere’s treatments, written by me and a few fellow Meniere’s warriors:  Meniere’s Treatments Part 1 – Diet, Meniere’s Treatments Part 2 – Medication, Meniere’s Treatments Part 3 – Surgery, Meniere’s Treatments Guest Post – Lin, Meniere’s Treatments Guest Post – Suzanna, Meniere’s Treatments Guest Post – Angelea.  And one post I thought might help new patients explain vertigo is, What’s this Thing Called Vertigo Anyway?

5 External Resources that may be helpful:

 

 

I’m participating in WEGO’s #HAWMC, if you’d like to read more posts from today please search for #HAWMC and check out WEGO’s Facebook page.  Don’t forget to Like Picnic With Ant’s Facebook Page too.  🙂

If you would like to share your story on Picnic with Ants, contact me through the contact form on my About Me – Contact Me Page.