#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:

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  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.

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  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 9 – Ideal Place

Today is Day 9 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

Happy Hump Day! No denying life can get hectic, but let’s take a mid-week break to fantasize our ideal day! Would you go somewhere? Who would you spend it with? Have you had this day? If not – how could you make it happen?

 

There would be a lot of steps to creating my 100% ideal day.  Any one part alone would be a pretty darn good day, but put them all together and I’d have the day to end all days.

Wait!  There are 2 different kind of days that I dream about. Both require the same beginning requirements:

First I’d wake up with no pain, then I’d notice that my head did not feel the slightest bit off balance.  After I got over the initial shock of this, I’d dance around the room a bit, doing a pirouette for the first time in years.   Suddenly I could hear better with my cochlear implants.  I could understand a group of people if I wanted.  I could talk on the phone.  Speaking of which, on my ideal day, I’d call my best friend and talk for an hour or so.  (I’d sneak in a visit, but I only have one day, sorry love.)

Okay right now I’m just marveling at the fact that my head doesn’t hurt.  My head has hurt every day since I was 11 years old.  My neck doesn’t hurt, the degenerative discs have made just holding my head up a challenge some days.  All my aches and pains, gone!  What a day!

Turning my head I don’t have to brace myself because I don’t feel dizzy.  I don’t remember not feeling dizzy.  Suddenly I’m not afraid.  I know I have this day.

This is where my 2 days diverge.

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photo by jenn dorff

One day is spent on a beach with my husband, just relaxing, building sand castles, riding bikes, walking, swimming, riding the waves, and drinking tropical drinks.  Heck, just lying there drinking tropical drinks would be a dream.  I’d love to end that day in my husband’s arms making love, without pain.  That would be my ideal day.

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click here for source

My other ideal day would be spent cleaning my house and cooking.  On my ideal day I would not get tired I’d be able to really clean my house and cook a fantastic meal.  I really miss being able to do these things.  I know it sounds silly.  Why would I want to spend my ideal day scrubbing my house?   It’s something I can’t do now that I really want to do, that’s why.  But I’d end the day the same way I ended the first day.  Making love with my husband, without pain.  Something I haven’t ever done.

Either of those would be ideal days for me.

What would be your ideal day?  Would it be anything like mine?

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 1 What Drives You?

hawmc_background_coverToday marks the beginning of WEGO’s Health Activist Writers Month Challenge.  I will attempt to follow each prompt every day to bring awareness to chronic illnesses.  Be sure to check out WEGO’s Facebook Page for more blog posts during this month.  Don’t forget you can always follow my posts on my Facebook Page too!

Today’s #HAWMC prompt is:  First, let’s get to know each other! What drives you to write about your health? What do you want other Health Activists to know about your condition and your activism? Reflect on this for 15-20 minutes without stopping…GO!

What drives me to write about my health?  Since the prompt says to write for 15 – 20 minutes I’m going to write stream of conscious, if I repeat myself or have grammatical errors please forgive me.

I started writing about my health for the same reason I still write about it, to help others who feel alone when faced with the same conditions I have been faced with.  I’ve found support through my blog and I hope I give the same.

I try to bring awareness about Meniere’s Disease, Chronic Migraine, and Bipolar Disorder and let other’s who have these diseases know they are not alone.

I also have other illnesses that I mention along the way.  Like Degenerative Disc, Hypothyroidism and others.  I’ve also recovered from Avascular Necrosis in my hip and like to give others with this condition hope.

What drives me is my illnesses and my love for others.  My compassion for others and myself.  I write because it helps me and in turn I hope it helps others.

What do I want others to know about my conditions and activism?

Well there’s an awful lot to know about my conditions, as there is more than one condition to cover.  I’ll pick just talk and see what comes out.

Meniere’s Disease – Meniere’s is diagnosed by the symptoms, there is not definitive test for it.  The symptoms are: Random attacks of Vertigo, Fluctuating hearing loss, the feeling of fullness in your ears, and tinnitus.  If you have all of these symptoms and they have ruled out other illnesses then by process of elimination they diagnose you with Meniere’s Disease.  The progression of the disease can be different for different people.  It is normally only in one ear, it can attack both ears. I have it in both ears.   It used to be thought that the disease would “burn” itself out.  As the patient lost more hearing the vertigo got better, until there was a leveling out period where the patient no longer has vertigo.  As can be seen with me that is not necessarily the case.  I am deaf now and still have vertigo often.  There is not sign of a “burn out” for me.   I do want everyone to know that this disease does not progress the same for everyone.  just because I lost my hearing does not mean other people will, I still have vertigo, but that doesn’t mean other people will.  I’m in a very small minority.

Bipolar Disorder – I want people to know that people aren’t crazy when they have this.  Being Bipolar doesn’t stop me from living a normal life.  I want people to know that not everyone is the same with this too.  I am lucky.  With medication and therapy I am doing very well, and have been for years.   Others are not so lucky.  Medication does not work for everyone. Everyone with this disorder has to work hard.

Chronic Migraines – I want people to know that migraines are not just a headache.  They are so much more than that.  They make you sick all over.  Having a migraine for more days during the month than not can put a huge damper on life.

It takes a lot to face the world with a smile on your face when you are faced with these illnesses and more, but with the help of mindfulness and a support from those who care about me I get by better than I could ever imagine.

This is some of what I want you to know about me and my illnesses and why I write.  I hope you will join me on this month long journey.  Wish me luck that I can accomplish this goal of posting every day this month!

Thoughts on Migraine Hypersensitivity

Thoughts on migraine hypersensitivity

I found a post on Hearing Health and Technology Matters that I felt would be of interest to many of you.

Thoughts on Migraine Hypersensitivity By On July 18, 2016

“As the director of a balance and vestibular clinic, I see many patients with complaints of dizziness, disorientation, and motion sensitivity related to migraine. We work closely with our neurology colleagues in managing these patients. The International Headache Society has an official classification of “vestibular migraine.”

to continue reading this article please follow this link: http://hearinghealthmatters.org/dizzinessdepot/2016/thoughts-migraine-hypersensitivity/

Update 5.10.2016

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It’s been a while since I’ve written a simple update about me.  Other than the migraine scenario.

What’s going on right this second?  My head hurts!  Yes I’m still fighting migraines.  I’m also having vertigo again, every day for the past week.  Yesterday I had it all day long!  It would go absolutely crazy, then it would slow to just barely moving, then it would go crazy again.  This went on for 12 hours.  I’m starting a regimen of steroids.  I don’t like being on steroids because they think that may be what caused the Avascular Necrosis in my hip, but I’m desperate.  My headache speicalist and my ear doctor both agree that steroids is the best thing to stop this cycle.  So here we go again.

I finished my Vestibular Rehabilitation Therapy.  It was a great experience.  I hope it did a lot of good.  I say hope because I wasn’t having much vertigo when I was going through therapy.  I was amazed at how well I progressed through the exercises.  On the last day, I had a vertigo attack start right there in the exercise room.  All I could do was hold on to Stuart and my therapist and squeak out, “I want to go home.”  A wonderful way to close out an otherwise great experience.  Since that last appointment I haven’t been able to do any of the exercises without falling.  I’m sad and pissed.

I’ve decided not to do the gentimicin injections.  There are so many risk.  When I’m at my worst I will think I don’t care about the risk, I’m willing to try anything, but I just went through a month of very little vertigo.  If I have the gentimicin injections I may never have good days.  I might not be able to learn how to balance without my ears.  And it does nothing to stop the vertigo caused by migraines.  What if most of my vertigo is migraine related?  I would still have vertigo and have to fight having no balance system in my ears.

My new ear doctor is thinking about trying steroid injections in my ears to see if it helps. (one ear at a time) But we will wait until I’m really bad again.  (If things keep up like this past week, we’ll be talking about this fairly soon.)  Steroid injections don’t carry the risk that gentimicin does.  It wears off, so if it works it often has to be repeated every 3 months. Since they think my Menerie’s is autoimmune, this is a good diagnostic tool, and if it makes me feel better, great.  Therefore, this is a good thing to try before deciding on gentimicin.  My new doctor is not a fan of gentimicin, but did not say he wouldn’t rule it out as a very last resort.

I’m sad right now.  Things aren’t going well.  Too many times I feel I’m saying, “I’m having a bad day.”  There have been days I’ve been so angry I felt like I didn’t know myself.  For the first time in a long time, I feel handicapped.  I hope all of this is part of my health not doing well, added stress and maybe menopause.  Not my bipolar medication taking a nose dive.  We’ll have to wait and see.

I have a couple of questions for those of you who have seen a naturopath or holistic doctor; Did seeing one help you?  How did you chose which one to go to?  I’ve been thinking about seeing one to try to get my over all health better, but I have no idea how to figure out who to pick.

As always thank you for supporting and caring about me.

 

Migraine Madness

headache guide 1a

My migraines are never under a 6, the average is a 7.5.  10 means you go to the Emergency Room.  Unless I was dying I wouldn’t go to the ER for a migraine.  I do not think they could help, and I do not want to labeled a drug seeker.

This post is personal.  No links to studies to back up what I’m saying.  Nothing more than what is happening to me.

On March 22nd I had a migraine.  Every day since March 27th, except 1, I’ve had a migraine.  Yes, I’ve had a migraine for 43 days out of 44.

This is not a medication rebound headache.  I have not taken medication for more than 15 days in a given month.

Can you imagine the days I haven’t used medication?

When I use medication I have Maxalt, Toradol, Toradol injections, …and well that’s about it for my rescue meds.  I am on others that are supposed to help keep these buggers away, but as you can tell, it isn’t working.

I’ve gone through a DHE protocol of 3 shots for 3 days.  During this time was the day I didn’t have a migraine.  I still had a headache, but it wasn’t a migraine.

Why is this happening to me.  Well I have a guess, but I don’t really know.

After I had my seizures my Neurologist told me that Topamax can cause seizures in some people.  This medication is used to prevent migraines, but it is also used for seizures.  So the thought is that the seizure drug I was on actually caused my seizures. I was on it for a long time before I got seizures, but there was this little hiccup problem with that medication right before I started having seizures that probably caused it to go crazy.  Our mail order pharmacy didn’t fill my prescription on time.  They had a problem with the prescription and didn’t tell anyone.  Things got so crazy I was off of my med for over a week, it may have been close to 2, when I finally got my prescription I just started taking the full dose, I didn’t think about ramping up.

So I ramped down and got off the Topamax and the seizures stopped.  I was off of the Topamax for less than a month when these migraines started.  I normally have about 15 migraines a month, some months a little more.  Very few months have I had less than 15.  I used to think the Topamax didn’t do a lot to prevent my migraines, now I am pretty sure it did.  Right now I’m so ready to go back on this drug.  If I have a seizure I’ll stop it.  (I wouldn’t say this if the seizures had been hurting me, but from all the tests, the only harm they cause if the twisting of my body.)  Unfortunately, I kinda doubt my doctor will be willing to take this risk.  Maybe there will be something better.

Today my neurologist called in another medication for me.  I’m to have 2 more DHE shots and take this new medication right before I go to bed for 3 days.  (I’m sorry I don’t remember what the medication is, I’ll find out when Stuart gets home with it.)

If this new medicine regimen doesn’t work I don’t know what the doctor will do.   I’m lucky that my neurologist specializes in headaches.  She actually runs a Headache Clinic.  I’m confident we will be able to get these migraines under control.  She won’t give up.

During this past month the vertigo has showed it’s ugly head again, but not as often as I would have thought.  I do question if this vertigo was Migraine Associated Vertigo (MAV) .  I’ve had a couple of attacks of rotational vertigo (where I see the world spinning around), most has been motion vertigo (where I feel as if I’m moving but I’m not).  Rotational vertigo is by far the worse.  I had a bought of that yesterday, but it wasn’t too bad.  The world would spin for a few seconds then for hours I’d feel like I was moving or that when I moved I had absolutely no balance what so ever.  Yesterday could have been MAV, I just don’t know.  It was a very bad day.  I woke with a Migraine at 9.5 on a 0-10 scale.  This causes me a lot of stress, stress causes a Meniere’s attack, of course that causes vertigo.  I’m leaning toward Meniere’s because my hearing was way off all day.

Most of the month I’ve been having motion vertigo, this was only the 3rd time I’ve had rotational vertigo.  I’m not sure why the rotational vertigo has calmed down, but I’ll take it.

I haven’t been around so much this past week, because the pain is getting to me.  I’m falling into Migraine Madness.

So, all my ramblings lead to one thing.  My head HURTS.

Winners of The Fay Farm Warming CBD Rub and Discount Code

(remember – This is a sponsored post for The Fay Farm Warming CBD Rub. I have been compensated through the Chronic Illness Bloggers network. All opinions remain my own and I was in no way influenced by the company.”)

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I’m happy to announce the winners of the Giveaway for The Fay Farm Warming CBD Rub.

To pick the winners I assigned everyone a number in the order you entered and entered the number in the Random Generator on Random.org.  The winning numbers are 1 and 10!

Ann Cluck and Elizabeth Neal you are the winners of .5 oz Warming CBD Muscle Rub, valued at $15 each.

I will contact the winners by email.  If for some reason either cannon claim their prize I will pick another name.

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