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

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A visit to the Migraine Doctor

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.

#HAWMC Day 11 – Friday Follow!

Today is Day 11 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

Friday follow! Create a must follow list for your
community:
• Top 10 Tweeters
• Top 10 blogs
• Top 10 Facebook pages

follow-friday

image source click here

There are so many amazing people, it is hard for me to pick just a few to pass on to you, but I’ll give it a try.  If I don’t mention someone it doesn’t mean that I don’t think you are great!!  It just means I ran out of room.

Tweeters worth reading their tweets on Twitter.

  1. @HearingHealthM (Timely information and lively insights for everyone who cares about hearing loss)
  2. @HurtBlogger (#Rheum advocate, #ChronicLife Founder…great chronic illness advocate)
  3. @dizzysupport (a community to inform and support people who suffer from dizziness, imbalance, vertigo, & vestibular health problems…)
  4. @911well (Mindfulness Wellness – Start your day with something positive…)
  5. @HeadacheHeroine (Spoonie: All types of headaches, narcolepsy. food allergies, (oh my!)
  6. @myselfandhealth (REAL TALK about HAPPINESS & MENTAL HEALTH).
  7. @MySpinningHead (Meniere’s Sucks Raising awareness of Meniere’s Disease by ranting about how much it sucks)
  8. @MenieresTeam (Bringing hope, inspiration and information to Meniere’s patients.)
  9. @sharieberts(Hearing Health Advocate)
  10. @justagoodlife (Patient Empowerer +…)

Blogs I just can’t get enough of…

  1. Hearing Elmo (hearigelmo.com) “Living with Hearing Loss and Invisible Disability”
  2. ADD…and so much more. (addandsomuchmore.com) “You can’t let what you can’t do determmine what you CAN!”
  3. Bipolar Barbie-Q (bipolarbarbieq.wordpress.com) “I was just getting seasick from seeing too much”
  4. Polishing Dookie (polishingdookie.wordpress.com) “Making the best of the sh*t I’ve got.”
  5. Behind the White Coat (doctorly.wordpress.com/) “Beats a real human heart”
  6. The Manic Years (themanicyears.com) “The world through the eyes of a bipolar mind…”
  7. My Frilly Freudian Slip (myfrillyfreudianslip.wordpress.com) “CREATIVE : ) : BIPOLAR ESCAPADES : ][: “
  8. Life of MON (lifeofmon.wordpress.com) “I Life Hard”
  9. The Mesh Warrior (themeshwarrior.wordpress.com) “The pen is mightier than the scalpel”
  10. All Things Chronic (painkills2.wordpress.com)

Facebook Pages worth a Look and a Like

  1. Transform Your Chronic Life
  2. Chronic Illness Cat
  3. Mental Health and Invisible Illness Resources
  4. Patients Like Me
  5. VEDA Vestibular Disorders Association
  6. Meniere’s Resources
  7. Chronic Illness Bloggers
  8. Putting Our Heads Together
  9. Migraine and Chronic Pain Art
  10. Living with Invisible Illness

I hope you enjoy these links.  If you have a link you’d like to share please leave it in the comments.  I enjoy finding new sources of information.

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 8 – I Know I Can!

Today is Day 8 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

Little Engine Post. Write a list post with 10-15 lines that start each with “I think I can…” Write 5 lines at the end that start with “I know I can.” They can be big goals or something that’s been on your to-do list for the last few weeks- it’s all up to you.

i-know-i-can

image found here

I started writing this post and listed all these things under “I think I can” and realized that they all should be under “I KNOW I CAN”!  This post will list a lot of things that are a challenge, but I KNOW I can do it!!  It’s a pretty random list, things that came to mind as I was writing,and it’s in no particular order.

  • I KNOW I can finish this blogging challenge.  (having a chronic illness can make every commitment a challenge, but I know I can do it!)
  • I KNOW I can visit two friends in one day this weekend.  (this could prove to be a challenge.  I will be visiting them after riding in a car for 3  hours.  I hope all will go well.  I really want to see my friends, I don’t have many and I don’t get to see them often. I know I can do it!)
  • I KNOW I can help cook sometimes. (I actually helped hubby cook on Sunday!  Something I love to do, but has become too dangerous because of my disequilibrium and vertigo.  However, on good days, I can still help!)
  • I KNOW I can keep up my blog.  (there are times that I doubt I can keep this blog going.  When my health interferes it takes so much to keep writing, but I know it is then that I need to write the most.  I need to let others see me vulnerable.  There may be times that posts don’t come as often as I’d like, but I know I can keep it up!)
  • I KNOW I can be the best advocate for me. (there is no one who knows me as well as I do, therefore there is no one who can advocate for me as well as I can.  My healthcare team beware! 🙂
  • I KNOW I can have the courage to try new treatments.  (sometimes I feel I’m done, I just don’t want to try any more.  I know there is not cure.  I’m tired of trying.  But, I know I have the courage to keep trying.  I need to try.)
  • I KNOW I can go on vacation with my husband.  (We’ve been talking about going to visit family that lives close to 3000 miles away, I know I can fly and go on the trip.  Crossing all fingers and toes!)
  • I KNOW I can go shopping. (With my hubby or a good friend I know I can go shopping.  I just need my trusty walker and I should be good to go.  On a good day that is.)
  • I KNOW I can take a bath by myself.  (this really is an I THINK I can.  I may not be able to.  I have a lot of anxiety taking a bath or shower because of vertigo and overall disequilibrium.  I am better with a bath than a shower.  However, sometimes I still have vertigo start when I am in the bath and I need help, FAST.  So I think I can take a bath by myself.  That doesn’t mean I really can, so normally hubby helps me get in the tub and leaves me and I just yell if I need him.)
  • I KNOW I can have fun with my husband.  (we laugh together almost every day, not matter how sick I am.)
  • I KNOW I can be a good friend. (I think I’m a better friend now than I was before I got sick.)
  • I KNOW I can live with this pain. (sometimes I doubt this, but I know I can do it!  The  pain from the migraines and the degenerative disc can be overwhelming at times.)
  • I KNOW I can be an advocate for others living with chronic illnesses, especially those with Meniere’s Disease. (I’m just a little voice in a large pond, but I’ll use my little voice as much as I can.)
  • I KNOW I CAN……

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!

Hi Pumpkin!

Earlier this month hubby and I went to the pumpkin patch.  I was having a really good day.  We had a great day together.  We played in the pumpkin patch, went through the petting zoo, and had kettle corn.  Last weekend I had another great day and carved the pumpkin I picked!   Yay Pumpkins!   (sometimes it doesn’t matter how much you pay for things later, it’s worth the fun you have in the moment)pumpking-patch-wendy

pumpkin-carving-2016

My Chronic Migraines

headache-7

photo of and by w. holcombe

I have Chronic Migraines.  I’ve been told this before, it was said once again yesterday.  I’ve met a number of Neurologist who thought they could make it better.  I still have Chronic Migraines.

I’ve been to 2 Neurologists who are Headache Specialist.  There aren’t many of these doctors out there, I’m lucky that I have been able to see 2 of them.

The first specialist I was seeing was a Duke, I moved to Charlotte and started seeing a specialist here.  I never thought we’d get to the point where we are now.

I’ve tried so many medications.  I’ve tried Botox, and well just so many things.  There are some medications I can’t try because of reactions I’ve had to other medications.  My doctor is at the end of things to try.

I was taken off Topamax when I had the seizures because they thought that it may have caused them, now that we know it wasn’t the medication I can go back on it.  My migraines did get worse when I was off of it, but my headaches were a long way from being optimal when I was taking it.

Over the last 3 months I’ve had a migraine ever day except 8.  This does not include the headache I constantly have.  When I first started seeing the specialist here she thought we could get the daily headaches under control and then the migraines would get better, well neither of those things happened.

Now I’m going back on Topamax to at least get me back to where I was.  Having migraines about 15 days a months instead of about 30.

I saw my specialist yesterday and she said she is looking out for studies for me to participate in.  There is nothing else she can think of.

I’ve decided to go to a Functional Medicine group to see if they can help me. Unfortunately, they are not covered under my insurance so this can get quite costly.  I’m not sure how much I will be able to afford.

(Functional medicine is personalized medicine that deals with primary prevention and underlying causes instead of symptoms for chronic illness and disease.)

This is Invisible Illness Week.  I’m not sure I’ll get it together enough to really post much about it, but Migraines are an invisible illness.  I look perfectly fine yet I’m struggling every day.  I have Persistent Daily Headaches and Migraine headaches.  Every day my head hurts.

Remember, just because someone looks perfectly fine doesn’t mean they aren’t suffering silently.  We may look great and still be sick.

#ThisIsChronicIllness #InvisibleIllness