#HAWMC Day16 Activist Advice

On November 16, 2016November 15, 2016 By WendyIn #HAWCM, Chronic Illness3 Comments

Today is Day 16 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge). The prompt today is:

Wisdom Wednesday:
What advice do you have for health activists just starting out?
Share your words of wisdom for all the health activist rookies out there!

I guess my biggest piece of advice would be to just get started. Just jump in and start. I’ve been blogging for years, yet I feel like I’m just getting started. I always feel like I’m just getting started, perhaps because I do little more than blog. Recently I started my facebook page, and I’ve started being active on Twitter. I’ve searched out others who posts about Meneire’s Disease, migraines, bipolar, chronic illness and pain in general. I’m learning so much!

I can’t do a lot of the things I’d like to do as a health activist. I’d love to be able to be a voice in person, to speak, to go to conferences, to be more involved. But alas, I can’t. I may try more in the future, but I’ll admit at this point in time I’m too afraid to try much more than I’ve been doing. It has been very rewarding though to get to know so many people who not only understand what it’s like to go thorough the same things I do, but are able to put a voice to it.

My recommendation for starting out to be a good activist. Start slow. Don’t bite off more than you can chew all at once, you will get burned out way too fast. Focus on one thing at first then move on to the next. If you blog, make sure to blog on a regular basis. No mater what form of social media you like, be sure to stick with it. Post often. Make contacts. Believe in what you are doing. Care. I guess that’s the biggest thing, that’s what will keep you going, you must care.

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 14 – Last Week/This Week

On November 14, 2016November 12, 2016 By WendyIn #HAWCM, Chronic Illness5 Comments

Today is Day 14 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge). The prompt today is:

keep-calm-it-s-only-monday-93

Case of the Mondays.
Write about something that gets you down, burns you out, or makes you sad.
Purge it in a blog post. Turn it around at the end and tell Tuesday why you’re ready for it.

I don’t want to get all caught up in the self pitting part of Blue Monday. I had a pretty rough week last week, this week I’m determined to turn it around. Let me tell you about it.

Last week I had severe migraines almost every day. This week I plan to take medication as soon as the headaches start. I will not worry so much about running out of meds, or rebound headaches. I will work to stop this cycle of severe headaches before it gets too strong of a grip. (hopefully)

Last week I was very off balance and was having mini attacks of vertigo. Last week I was not prepared for this. I’m too used to having my husband here to help me. This week I will be prepared to help myself as much as possible.

Last week I couldn’t walk without holding on tight to my walker. This week I will bring my good walker in the house from out of the car, I have a seat on it and a better way to carry things.

Last week I had a hard time getting myself food because of my balance, this week I will be prepared and will have food ready that I can just grab and go. Food that I can balance on my walker.

Last week my anxiety was very high. This week I will get back to meditating and taking breaks for deep breathing exercises.

Last week I beat myself up because I felt so needy and dependent. This week I will practice self compassion.

Last week I cried a lot. This week I will focus on the positive.

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 11 – Friday Follow!

On November 11, 2016November 10, 2016 By WendyIn #HAWCM, Chronic Illness1 Comment

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

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.

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

Blogs I just can’t get enough of…

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

Facebook Pages worth a Look and a Like

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!

On November 8, 2016November 8, 2016 By WendyIn #HAWCM, Chronic Illness10 Comments

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 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 6 – Superpower Sunday!

On November 6, 2016November 5, 2016 By WendyIn #HAWCM, Chronic Illness4 Comments

Today is Day 6 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge). The prompt today is:

Superpower Sunday! If you had a superpower – what would it be? How would you use it?

I thought long and hard about this question and the first answer I came up with was the only logical one I could think of. My super power would be the ability to control the biological structure of any organic matter. In other words, I could heal. (I’d be able to do harm if I chose, but I’m a good person, so I’d only use my ability to heal. Of course, there are a few doctors that I wouldn’t mind feeling the way I have for a few moments. – NO! Really, I would only use my powers for good!!)

How would I use my powers? Hand on head…”I heal you, and you, and you….” You think that would be simple. I’d heal people. But really things would get complicated very quickly.

I know I’d have to keep my ability a secret. I’d have to be the typical super hero and have a secret identity. I know I wouldn’t be able to help everyone and that would break my heart. How would I chose? Would I only be able to help those who happen to be close to me? Would it simply appear to be a miracle?

As much as I’d like to heal everyone I know I couldn’t, and I couldn’t sit around 24 hours a day just healing people. Would I go around the country with a traveling show healing those who came to my tent? “I Heal You Brother!” No, I don’t think that would work. I know I’d like to heal those who I’ve met who have suffered so much, but there are so many more whom I have never met.

I know I’m going around in circles and repeating myself, but this is the problem with thinking up a superpower. We don’t think about the reality of them. I want to heal people, but I don’t know how to chose who to heal. The reality is I won’t be able to heal everyone. I’d have to live my life in secret. I would only be able to heal those whom I came in contact with. That wouldn’t be enough for me.

I think it’s best to not have a superpower. We have to find our way in the world. Perhaps we can change the world as we are.

If you’d like to read more posts from today please search for #HAWMC or check out WEGO’s Facebook page. and don’t forget to check out Picnic With Ant’s Facebook Page too. 🙂

#HAWMC Day 4 – Day of Diagnosis

On November 4, 2016November 3, 2016 By WendyIn #HAWCM, Chronic Illness3 Comments

Today is Day 4 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge). The prompt today is:

Do you remember the day you were diagnosed? Perhaps you were scared, felt alone and surely you had tons of questions. Write a letter to yourself for the day you were diagnosed, knowing all you do now.

Dear Wendy,

You’ve been waiting for this day for a long time. You’ve been diagnosed with Meniere’s Disease before, you just didn’t know that the doctor didn’t really diagnose you. He didn’t know much of anything. I’m sorry you had to go through that. He didn’t even put the diagnosis of Meniere’s in your records, he only told you that you had it. So today you sit there wondering….”Do I really have Meniere’s? Do I have some brain tumor? Is there something worse? Could it be something minor and I’ve been suffering for 7 years because I have been going to a doctor who “doesn’t know much about Meniere’s”? How could he have looked you in the eye and said that? After he has been treating you for SEVEN years? Now that it is in both ears he admitted he didn’t know much. WTF?

So today you are here at Duke Medical Center to see this new doctor. The doctor won’t even see you until you have been through a series of vestibular testing and had hearing tests. Don’t be so nervous. The tests aren’t as scary as they might be, the people who run the tests on you are very nice. Don’t get me wrong the tests are intimidating, but the wonderful people there who are taking care of you make it much easier.

After the vestibular testing and the hearing test you go back to meet the doctor and you are diagnosed with Meniere’s. The tests showed that you have vestibular damage, but there is no cause shown, and you have all the symptoms of Meniere’s Disease. Unfortunately, you have it in both ears. That is going to make it more difficult for you, but you are strong, you will be able to deal with it. The disease is progressive. You don’t know it yet, but you will lose your hearing. That is not as scary as it sounds. You deal with it. Really, it will be okay.

The doctor is very understanding and doesn’t pull any punches. He tells you that Meniere’s is one of the worst diseases he knows of that won’t kill you. There is no cure. There are some treatments, but not a lot. He also tells you that it is a disease of random punishment. He is refering to how the vertigo hits. He explains it is likened to a soldier at war. He knows he will be under fire, he just doesn’t know when. He is always expecting it. You will always be expecting the random punishment of vertigo. It’s a horrible thing to live with. But you will deal with it. One moment at a time.

You learn all of this in one day. Some things you were told gave you some false hope. You will learn there isn’t a “normal” in Meniere’s. There is a lot you will have to deal with over the next few years. Know you will be okay. The more you start to follow a mindfulness mindset you feel better about how things are.

The day of your diagnosis is just the beginning. You have so many more days that are more important than that first day. It was just the beginning. You have no idea what kind of ride you are in for. Don’t give up, even when it seems like there is nothing left. (don’t worry I know you don’t give up….won’t give up!) Focus on each day as it comes, don’t worry about tomorrow so much. Try hard not to focus on the past. It is over and you can’t get it back. Focus on today, right now. Make today the best you can. But remember, we all have bad days. Be gentle with yourself.

If you’d like to read more posts from today please check out WEGO’s Facebook page. and don’t forget to check out Picnic With Ant’s Facebook Page too. 🙂

Hi Pumpkin!

On October 30, 2016October 30, 2016 By WendyIn Chronic Illness12 Comments

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

On September 28, 2016 By WendyIn Chronic Illness, Headaches, Migraines14 Comments

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

I Give Myself Permission to …

On April 13, 2016 By WendyIn Chronic Illness, Chronic Pain, Invisable Illness11 Comments

I’ve been participating in a Chronic Pain and Illness photo project. I participated in the same group last year, you can see those photos on these posts: Chronic Pain/Illness Photo Project, Chronic Pain/Illness Photo Project 2015 Week 2 , and Chronic Pain/Illness Photo Project 2015 Week 3. This year I’m sharing a few photos here and there, not the whole project.

I’d love to hear your take on this topic. What do you give yourself permission to???

Today – I give myself permission to Cry.

My x-rays showed more degeneration in my neck. C5-C6
The pain is intense. It just hit me that this is only going to get worse. The pain will always be there.

My father is in the hospital. I can’t go. I can’t ever go.

Today I give myself permission to cry.

(photo taken today, I manipulated it with photoshop, but the tear is real.)

crying

STOP

On April 11, 2016 By WendyIn Chronic Illness, Invisable Illness5 Comments

This photo symbolizes what I need to do…
STOP.
Stop and listen to what my body says.
Stop and look, really look at everything.
Stop and smell, and see, and taste…
Stop and breathe.
Remember to STOP and be mindful.

stop sign

this was part of the Chronic Pain and Illness Photo Project 2016

The theme for today was Mindfulness.

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