I’m number 44!

award

I received a message from Feedbot, that they named Picnic with Ants one of the top 100 chronic illness blogs.

You can see all of the blogs and websites who are honored to be listed in the top 100 here. 

This is the introduction from Feedbot explaining their ranking criteria:

“Chronic Illness Blogs List

chronic illness is a human health condition or disease that is persistent or otherwise long-lasting in its effects or a disease that comes with time. The term chronicis often applied when the course of the disease lasts for more than three months.

These are the Best Chronic Illness blogs from thousands of top Chronic Illness blogs in our index using search and social metrics. Data will be refreshed once a week.

These blogs are ranked based on following criteria

  • Google reputation and Google search ranking
  • Influence and popularity on Facebook, twitter and other social media sites
  • Quality and consistency of posts.
  • Feedspot’s editorial team and expert review”

 

There are some great blogs listed, so be sure to check the 100 Best Chronic Illness Blogs according to Feedbot.

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“The Shadow Boxers” – Book Review and Giveaway!

shadow boxers cover

My friend Kim Johnson over at I Tripped Over a Stone, got together with Karen Anderson and wrote a book to help others find how they can LIVE with fibromyalgia.  They know that with fibromyalgia every day can feel like you are fighting shadows.

With over 50 years of combined experience with fibromyalgia Kim and Karen understand that it doesn’t just affect you physically, it affects you mentally and emotionally as well.

The Shadow Boxers: Fighting Fibromyalgia, Your Personal Journal, is an interactive book where Kim and Karen help you on your own journey.

In The Shadow Boxers…, you will find Kim and Karen’s personal stories from first symptoms to the present.  They prompt you to make your own plan, write down your own ideas, and figure out how to really live your life with fibromyalgia!

The journal features

  • Definitions, with room for you to write your own definition or experience.  For example, they give the definition for a Fibromyalgia Flare, then you are given room to journal what a fibromyalgia flare means to you.  You could write it out, tell of your experience with a fibro flare, draw a picture showing what it means to you….it’s your journal, you get to decide what’s best for you.
  • The Seven Areas of Positive Change.  Discover “seven areas of you life that will respond to positive choices you make”.  Kim and Karen discuss these areas and prompt you to journal about each area.  You could tell how you will incorporate a change in your life, how you have already changed aspects of your life…, again, it’s your journal.  You get to decide how it works best for you.
  • Questions and Answers.  This section contains questions from the fibromyalgia community.  There are sample answers given, then you are given the chance to answer these questions for yourself.
  • Dear Fibromyalgia.  Write your personal letter to Fibromyalgia.
  • Six Healthy Habits to Develop for Fibromyalgia Syndrome.  These habits are explored individually, and you will find your own way to develop each habit.
  • Your Story.  At the end you are encouraged to continue to write your own story.  This is your journey, your story, your illness, who better to write your story?
  • Resources.  Be sure to check out Kim and Karen’s Recommended Resources, this is invaluable information.  Along with other resources you will find Fighting Fibromyalgia with Kim, Karen, and Andrea is a wonderful online support group.

Let me sum up by saying, I love this book!  I love the how it’s interactive.  I already journal, but my journals are simply thoughts of the day and such.  This journal gives me prompts to think about.  It gives me guidance.  It challenges me to think about things I might otherwise have overlooked.  This journal helps me find my way as I navigate through this illness.  I now have my own story.

The Shadow Boxers: Fighting Fibromyalgia, Your Personal Journal is available on Amazon as a Kindle Book or a physical book.  If you get the Kindle version you will need to get a journal to use in conjunction with it.

Or, you just might win it!!

Enter for your chance to win your own copy of The Shadow Boxers: Fighting Fibromyalgia, Your Personal Journey.

Kim has so graciously offered to give a copy of The Shadow Boxers: Fighting Fibromyalgia, Your Personal Journal to one of my lucky readers.   Please only one entry per person.  I’m sorry, but this giveaway is available to US readers only.

To enter to win a copy of The Shadow Boxers... simply leave a comment telling why you’d like to win.  Contest closes at midnight EST on September 20th.  The winner will be notified by email. (make sure the email you comment with is the email to you would like to be notified)  The winner will be announced on Friday, September 22nd.

Good Luck!!

 

**note.  I purchased my own copy of The Shadow Boxers: Fighting Fibromyalgia, Your Personal Story.  All opinions in this review are my own and I have not been influenced by anyone else.

I can’t be still…….

thedancerswithcopywrite

Today is the first day I’ve had any relief from the restlessness caused by my medications.  In my post about my side effects I mentioned that my antidepressant caused me to have restlessness and my doctor put me on something else to counteract the side effects.  I thought it was going to work at first, but it didn’t.  She changed the medication to a new one that should have helped with the side effects, instead it made it worse.  And my hair started falling out!  (not in clumps but my brush has to be cleaned at least twice a day)

The restlessness has been severe.  On Thursday I was at my therapist office pacing, and sobbing as I couldn’t be still and my muscles have been so fatigued they just can’t keep going.  I’m amazed I haven’t lost a ton of weight. (I have lost some, just not a lot compared to how much I’ve been moving)  I’ve been moving constantly.  and I do mean c-o-n-s-t-a-n-t-l-y!  I don’t feel like I can portray just how horrible this is.  I feel like my muscles in my back are tightening up all by themselves.  My back HURTS.  I just need to move.  It is very hard for me to sit here and type this post because I really NEED to be up and moving.  And yes, this is a better day.

My therapist talked with my psychiatrist while I was in the office.  She was concerned I might be going manic.  I’m not.  I do feel a little like it, the motion, the antsy feeling….but it’s different than this.  This is different.  It is in no way good.  When mania first starts with me, it feels good.  (unfortunately, that’s why people shy away from treatment so often, it can feel good, but things change)  I think my psychiatrist finally understood just how bad it was.  I don’t think the messages she was receiving portrayed the situation correctly.  Poor Stuart was calling her office a LOT.

After she talked with my therapist she changed up my medications.  Possibly because I said I wanted to be off anything that MAY cause restlessness.  Just start over.   Yes, I’m risking my sanity by switching antidepressants, but I’m doing well and I’m very aware of what I’m doing so if I start getting depressed I’ll know what is causing it.  That is the first step in dealing with it for me.  I know it will stop.

I wrote the previous part of this post yesterday (Saturday), today I’m not doing well at all.  I don’t know why I felt somewhat better yesterday, today is hard.  I wish I knew exactly what I have.  The name it is called.  She mentioned kinesia, but that encompasses so much.   From what I’ve read it sounds like I have Akathisia (A feeling of muscle quivering, restlessness and inability to sit still, sometimes a side effect of antipsychotic or  antidepressant medication – Mayo Clinic)   I’ve  been reading that some of this can become permanent.  “Please do not let this last forever.  Please don’t let it last much longer.”  I really feel like I just can’t deal with it much longer.  This is the stuff a nervous breakdown is made of.  My mental health drugs have caused extreme physical changes, this hasn’t been helping my mental state of mind, but I’m not manic or majorly depressed at this moment.  yes, I’m a little depressed, but who wouldn’t be under these circumstances?

Unfortunately, today is a bad motion day.  I do have moments where I feel somewhat normal, but that is normally when I’m really concentrating on something else.   I just want to get up and move.  But moving really doesn’t help the feeling get better.  I just NEED to do it.  I’ve never had a feeling like this and it is very hard to explain, I hope I’ve made it understandable.

I’m confident that things will get better, but I must admit I have the fear in the back of my mind that it won’t get better.  Then I try to bring myself back to the present and deal with it one moment at a time.   I CAN DO THIS!

 

*all artwork on Picnic with Ants created by Wendy Holcombe unless otherwise noted.  Please do not use this image without permission.

Better. Functional Medicine and a Visit from a Friend.

On April the 18th I saw a Functional Medicine practitioner.  It was interesting.

She asked me a lot of questions, a thorough medical history, a short exam….it was a long visit.  But tell me, why do providers send you the information to fill out before you get there if they aren’t going to look at it until you are sitting in the office.  I feel like that’s a waste of time.  Me just sitting there while they read the information they’ve had for days.  Of course, I don’t feel they should do a lot of work when I’m not there, they don’t get paid extra, but being prepared would be nicet.

We talked quite a while.  She thinks I have an autoimmune disease, just like other doctors do, they think they just don’t have a test for it.  I don’t really see what difference it makes to know if I have an autoimmune disease or not.  There isn’t a one stop treatment for those diseases.  Mostly I see doctors giving those with autoimmune steroids.  Something I can’t take.

She wants me to get some blood tests done.  One for allergies, one for genetics, and one for….oh golly, I don’t remember what the other one was for.  My insurance doesn’t pay for any of this.  It’s expensive.  I haven’t gotten them done yet.  I was waiting on my insurance to see if they pay for anything, and now I’m waiting on my ride.  It’s a little difficult when you depend on someone else to drive you places, and that person works full time.  Stuart doesn’t mind taking me, but his time is limited.  We’ll get there.

We talked about my migraines, she is hoping to find a trigger with the tests.  She suggested Magnesium Threonate (see the image above, I got mine from Amazon)and turmeric for the pain.  I started them within a couple of days and boy has it made a difference.  I’ve had days without migraines.  That’s HUGE!  I have that base line headache all the time, it’s been there most of my life, but the migraine on top of that has left me for a few days at a time.  I’m shocked at how much this has helped me.  Shocked!  Why hadn’t my migraine specialists suggested this in the past.  It really bothers me that I may have been helped years ago, if only someone would have suggested the right form of magnesium.  Heck, I never had a doctor suggest magnesium at all.  I started taking it because I read about it.  But I didn’t know there were different kinds and I couldn’t tolerate the kind I was taking.  I’m just so grateful for the relief.

I’ll go back to the functional medicine practitioner after I get the blood tests done.

me and kym

This week a very good friend of mine came for a visit.  It was so nice to see her.  She lives on the opposite side of the country from me, our visits are rare, and precious.  It was so nice to have a real friend come and spend time with us.

Kym and I went shopping.  I went out without Stuart for the first time in over 5 years.  It was liberating, but it was also a little scary.  However, Kym is one of the most level headed people I know and I knew she would not freak out if something happened.  She did something so right.  At one point I felt I needed to go home and I said so, she just said, “Okay, let’s go.”  She didn’t freak out and ask me countless times if I was okay.  She trusted me to tell her if things were getting  bad.  I admit though that I may have pushed it further but I was a little scared and tired.  It was a very good shopping trip.  No I didn’t go crazy with the spending, but I did find a couple of cute things that fit.  (I’ve lost a lot of weight recently, so I need clothes that actually fit me now.  Kym is a good person to shop with.

Vertigo has been kind to me recently.  I’ve had very little spinning, and when I do it is just a slight spin, nothing to worry about.  I did fall last week, and hurt my back a little, but really it’s nothing to be concerned about.  If things go as well as they have been I won’t have anything to write about.  LOL

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

Mindfulness Monday – Change

ice-sicle

photo by S. Holcombe, rights reserved.

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

~Wayne Dyer

 

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

~Alan Watts

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.