It’s hard to come back

I haven’t meant to stay away for so long, it’s just happened. I’ve simply been feeling a bit reclusive, withdrawn, just wanting to keep myself to myself. I haven’t felt there was anything wrong, maybe I just needed a recharge. Maybe it’s because my husband has been sick twice in the last month. First he had a bad cold that set him back a week then less than 2 weeks later he came down with an awful bug that put him in bed for another week, (in between that I had a cold). It’s hard when the sick need to take care of the sick, but I think I did a pretty good job of it. I even went to three doctor appointments all by myself.

I actually felt like I was accomplishing quite a bit, but something has been off. I didn’t want to talk to people. I didn’t even realize how much time went by where I didn’t talk with people, that was a weird thing. People I normally talk with nearly every day, suddenly I hadn’t talked with in a week or more. Yeah, I’m still not really sure what has been up with that. I missed them, but I felt like I had absolutely nothing to say and felt awkward trying. I’m feeling awkward even trying to make sense of it. I simply felt I needed to be alone.

Now, I don’t know what has been going with anyone, my friends I normally talk to regularly or my blogging family. How could I have just backed away from everyone as if I don’t care. I do, I care a lot. I can only think of one thing that happened that may have sparked this, I made a comment on someones blog that hurt them. I never meant to. I thought it was encouraging, but it was not taken that way, and that broke my heart. I would never do anything to hurt another person, especially one of my blogging friends and family. However, I never meant to stay away, it just happened. I want to come back, but I’m not sure how.

I do have some news to share. Some good news about a new neurologist and some not so good news about us having to move before we planned. All things I want to share soon.

So, do I feel more connected to the world now? Not really.

Stop Talking!!

I can’t stop talking. I talk on the time!

I’m driving myself crazy and I’m sure I’m driving Stuart crazy.

During the day I talk to KIki (our dog) a lot. I think she likes, but how would I know? Lately I’ve been trying to figure out why I talk so much and how I can stop. I’m trying hard to notice and stay silent, but I tell Stuart everything that’s going on even if it’s not the slightest bit important. For example, just now I showed him a pdf that was a page that listed everything that is recyclable here, and told him I printed it and taped it by the bin. That was good, he’s been looking for that, I should have just stopped there. Then I started pointing out that the page had a blue background because our recycling bins are blue and it says to “Use the Blue”, I went on to say, however, the one I printed out is not blue because our printer only prints in black and white. All of this transpired while he was trying to read. How he gets any reading done I have no idea.

That is just a tiny example.

If I’m not talking I’m often slightly moving my lips because I’m actually talking in my head, but unlike most people I feel the need to say it out loud. A couple of months ago this actually got worse because of the mania, and I really noticed it then. I talked more and very, very fast. Now I’m back to my normal speech, but I’m really noticing how much I TALK! When did this start? I haven’t always been like this. What on earth prompted it?

Well I have a few theories.

When I first started losing my hearing I realized that I would often talk over people, I realized then it was for two reasons. One I couldn’t hear everything they said so I often didn’t realized they were still talking. (I wasn’t very good at reading lips, or even noticing that they were still moving….duh). I made a conscious effort to get better at that and I think I have. When I’m with others, like going to breakfast every Sunday with Stuart’s father, I don’t talk over anyone. I try very hard to understand what is being said and add to the conversation when appropriate. (hand patting back, I got that at least).

Another theory is, when I first got sick and for a long time after that, Stuart worked from home. Even at his last job he worked from home a lot. Here, he is gone all day, I’m alone and basically have no contact with people; especially when I’m having a flare and can’t drive or get out at all. I’m often texting, but that’s different. (I probably do that too much too) So when Stuart gets home he is bombarded with everything I’ve been thinking all day and everything that is happening since he’s been home. I have noticed when I’ve been in silence for hours and I suddenly see someone, like when Stuart gets home from work, I can’t understand much at all. His voice sounds all garbled and tinny. That’s just weird to me. I normally have the TV on all day trying to hear something so I’m not hit by that, but even with that noise going I still get bombarded by this garbled speech when I first see someone. Is that one reason I talk? So I won’t hear that?

I used to get so mad at him because he didn’t hear what I said. He would be watching a show or reading and just not hear, after all, he didn’t know if it was important or not. How could he, I talked all the dang time. Recently we made a pact that if we need the other to pay attention, we would let them know and ask them to stop what they are doing and pay attention., but other than that, I could just ramble, if he hears it, that’s okay, if not, no worries. I really want to stop talking so much.

In Buddhist teaching we find that talking all the time or for too long is a form of selfishness, while being easy to talk to shows respect, generosity, and courtesy toward others. Buddha saw being easy to talk to as an expression of love (Sn.143*). Listening is a virtue, not talking all the time.

So how to I stop this constant chatter? First I think I should meditate more, I’ve lost that practice along the way, not that I ever did it much. Practicing to sit still in silence has to be good for this person who can’t be silent. I know I won’t be able to silence the chattering monkey mind for a very long time, but if I can just keep my mouth shut for a while, that would be a big step forward. Perhaps I can remember the Buddha’s teaching each time I start to ramble. I shall also try hard to listen more, how can I be listening if I can’t stop talking. Of course there aren’t many people around for me to listen to, and often when I try I can’t understand what they say anyway…..part of the problem huh? I have noticed when I’ve been in silence for hours and I suddenly see someone, like when Stuart gets home from work, I can’t understand much at all. His voice sounds all garbled and tinny. That’s just weird to me. I normally have the TV on all day trying to hear something so I’m not hit by that, but even when that noise going I still get bombarded by this garbled speech when I first see someone. Is that one reason I talk? So I won’t hear that?

If all else fails, I can always tape my mouth shut…that will teach me!

**Everyone should read the comment by Kara, it is a wonderful contribution to this post. Don’t wait, go there now!

*Sutta Nipāta, ed. D. Andersen, H. Smith, PTS London 1913

Finally some promised pictures.

I’m still not able to type much, a lot of hunting and pecking with just my left hand, but I’m managing to do a little.  My wrist has not improved, the shot did not work, I go back to the doctor on July 2nd (which just happens to be my birthday).  Wish me luck.

 

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Welcome to our home.  The top photo isn’t very good, but it’s of the front gate.  The middle row from left to right: the front porch, the pool off the right of the house, the kitchen over looking the living room.  the bottom row, left to right: the bathtub/shower, flowers from my neighbor, the sick in the bathroom.

When I first visited Tucson I wondered why so many houses had bars on the windows and walls around their homes, well I found out.  The bars are because so many houses eight used to have, or still have, a Swamp Cooler.  For a Swamp Cooler to work, you have to have the doors and windows open.  So it’s not because the whole town has a lot of crime, it’s a deterrent for when people have the Swamp Coolers going.  (Swamp Coolers cool by adding moisture to the air, it’s really cool actually. but it only works in places with no humidity).  The walls are often added if you have a pool.  It is also a law that if a window in your house can open and it opens out to the pool, it must have bars. The pool must also have a gate that locks, or has a latch way out of reach for a child.

The house we live in was built in 1943, I think the realtor said, that surprised me since that was a time of rationing.  The bathroom was tiled in the 1970’s, the owner loved Fiesta-ware and the tiles were bought to kinda match that. I love it!!  The kitchen was also tiled like it at some point, but they remodeled the kitchen not long ago and the cool tile went bye-bye.  You can see the new stove in the tiny kitchen, and the tiny living room beyond that.  The living room is so small we had to get rid of our couch, and the dining area is so small we couldn’t fit a regular size table in it.  Too bad, because the house is pretty cool other than the tiny rooms, if they were bigger we would consider buying this house, but it simply won’t work, so we are on the hunt for a house to buy that meets our needs.  This property also has a guest house, which would be perfect for us when Dad moves in, but as I said, the main house just doesn’t work.

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There are many suns all around the outside of the house, that’s kinda cool.

I took a walk around the neighborhood the other day and I saw all these cactus!  The barrel cactus, the paddle cactus, prickly pear, and the big daddy of all the Saguaro. (you might not be able to tell from the photo bur the Saguaro has blossoms (well buds or dried of blossoms anyway), they don’t bloom every year so this was a treat.

These photos are all from around the house.  I especially like the last one.

 

I hope you have enjoyed the little trip around my new digs.  I have a few shots from the trip across country if you’d like to see them let me know and I’ll post those too.  🙂

*all photos were taken by me, W. Holcombe, please do not use without permission.

 

 

Meaningful Monday: Pema Chödrön

 

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photo by Lorraine

Wendy is too busy with all the wonderous changes in her life to present her usual Mindfulness Monday post at the moment. So, I am stepping in with a guest post for her.

I have always found great wisdom, humour and compassion in the words of  Pema Chödrön. She is member of/teacher at a Shambhala Buddist community – Gampo Abbey – in Cape Breton, Nova Scotia which gives her words a special resonance with me. My paternal roots, and extended chunks of my adult life were spent in the Maritimes. No better spot for meditation, retreat, and restoration. I just returned from the South Shore of Nova Scotia. My first visit “home” in 7 years; a truly transformative experience.

So in honour of Wendy and Nova Scotia, I present Meaningful Monday as a guest host for Wendy’s wonderful Mindfulness Mondays. All quotes are from Pema Chödrön.

 

“When there’s a big disappointment, we don’t know if that’s the end of the story. It may be just the beginning of a great adventure.”

“Each moment is an opportunity to make a fresh start.”

“Every situation is a passing memory.”

Monday Quotes – Gifts

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Greetings! I am filling in for Wendy this Monday, and as it is my birthday, I thought I would use quotes about gifts. Not just the tangible, wrapped in fancy paper with ribbon and bow. But the intangible, the ephemeral, the ethereal gifts we can give ourselves every day.

“This life is your gift to yourself…Open it!” (anon)

“The greatest gift you can give yourself is a little bit of your own attention.” (Anthony J. D’Angelo)

“Every day, once a day, give yourself a present. Don’t plan it. Don’t wait for it. Just let it happen.” (Agent Dale Cooper, Twin Peaks)

image: Lorraine 2017. Please don’t use without permission. Thanks.

 

Sitting is a Luxury

This will just be a short update on what’s going on with me and Akathisia. (literally meaning “inability to sit”).  I found a great article explaining this complex side effect to various psychotropic drugs including antidepressants and antipsycotics.  If you’re interested: Akathisia by the RxISK Medical Team.

The turmoil I have experienced with akathisia has been unbelievable.  The need to move has been overwhelming.  I can’t express how intense this sensation has been, it was consuming every part of my life.  You can read more about my experience with this side effect in my post “I can’t be still”.

I saw my psychiatrist last week and she took away one of the new medications, but kept me on an antidepressant that often helps with akathisia.  I’m happy to say that I’m much, much better.  I feel that sitting still is such a luxury.

Finally after a more than a month the restlessness is easing.  I still feel figetty and just want to shift and move a bit, but I no longer feel the need to pace until I drop, with still the need to move.   My back is still very tense.  The muscles have been tense for over a month, they simply do not want to settle.  I’m in a quite a bit of pain because of it.  I think I may need physical therapy to help calm it down.  I’ll be seeing my primary care doctor next Friday for my 6 month visit, I’ll see what she has to say then.

How about side effects with the new medication?  After all, can an drug actually cause no side effects?  I’m not sure it’s the medication that’s causing it but I’m having a hard time with my cognitive function.  That, sounds like I’m brain dead, I promise I’m not, I’m just having a hard time thinking.  I have brain fog and I’m very easily distracted, or my short term memory is shot….I’m not sure which, after all my brain is not thinking clearly.  Hopefully this is a side effect that gets better.  If not, we may be on the search for a new antidepressant.  sigh.

I promised this would be short, I’m keeping my promise.

I’m leaving you with a few articles about Akathisia that I found useful during all of this.  I learned so much.  I’m surprised I haven’t heard of this before.

 

Death and Living

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On June 30th my father died.  Yesterday was his birthday.  I would have thought that I would be filled with sad emotions, instead I’ve been filled with a renewed lust for life.  All we know really is life and death, I’m thinking that his death made me realize just how lucky I am to be alive.  I may have a lot of hurdles to jump over every day, but I’m alive and I will thrive.

Often when you have a chronic illness life becomes so hard we don’t care to live any longer.  I know I’ve been suicidal, more often I’ve simply felt that I didn’t want to wake up.  I simply didn’t want to exist any more, it was just too hard.  Since my father’s death, I’ve realized that I’ve been wasting what life I’ve been given.  Yes, I’m sick and I can’t do a lot of things that a normal person can do, but there are a lot of things I can do, I just need to figure out my limits and live within those without wishing for things to be different.  Wishing for everything to be different makes life miserable.

Losing a parent can make you reevaluate your life.  For me it made me realize I haven’t been appreciating my life.  I realize I want to live.  I may not enjoy every moment of my life, my life may be hard, but it’s my life and I’m going to live it!

 

During this holiday season, I wish you all a life well lived.

 

**all images on Picnic With Ants created and owned by Wendy Holcombe unless otherwise noted.

Gratitudes in the middle of a mess

It’s time to take a little time to notice some of the things I’m grateful for…before I completely meltdown (again)…I know this will help!

This move has been extremely challenging, mentally and physically.  I am very grateful that I (and I am serious here) am not curled up in a corner crying and trying to hide from the world.  I’m also grateful that I am still able to get out of bed and accomplish some things.  Yes, I am in a lot of pain but, I’m still doing much more than I have in years.  I am so VERY GRATEFUL for this.  I told Stuart last night, I just can’t believe I started feeling better (no not well, but a bit better) right before all of this happened.  Wow!  If I was still like I was just a few months ago now.  This move would have been…..uh, well I just don’t want to think about it.

I’m grateful I sold almost all of my fused glass supplies.  I have only 2 things left and they should be very easy to sell!  Because of this we didn’t have to move any of that!  Yay!!!  Also, because of this I was able to buy our living room furniture.  This made me feel so good.  I was able to contribute to the household.  This is the first time I have been able to do this in YEARS!  (We had to by new living room furniture because the furniture from out old place was too big.)  This is a loan to the house though, as soon as we can pay it back that money goes in my service dog fund.)

I’m very grateful that I met the nicest lady when I sold my fused glass supplies and she actually sold my kiln for me!  How cool is that?

I’m grateful that our new place has a beautiful backyard.

I’m grateful that we live within walking distance to a grocery store and other little shops.  I hope it really is within MY walking distance.  If not now, soon.

I’m grateful there is a park nearby.

I’m grateful Stuart works very close.

I’m grateful we found a restaurant that will make meals that meet my food requirements, and it isn’t far away.  Plus, the very first time we went we got the best waitress, she is the bomb!  We’ve been there one more time and asked for her, she remembered what I needed and helped me order!  Wow!

I’m very grateful I’m still losing weight.  It feels so good to be getting in to smaller clothes and seeing a smaller face in the mirror.  I’m grateful that the diet is making me feel so much better!  What you eat really can make such a HUGE difference in how you feel!

I’m grateful I have the coolest cousin in the world living close by!  Can’t wait to see him and his brood this week!  And it’s so nice we can call on each other!  He’s real family!  If your reading this, I love you man!!!

I’m grateful things are coming together……wait, did I just say that?  do I believe it?  Am I just saying it or do I believe it?  hmmm, let me think.  (Jeopardy them playing in my head…)   I’m not sure.   One thing will happen and it looks like things are flowing along then one thing will happen and things just start going backward…but I know things will end up…the way it’s supposed to be, after all how else could it be?

And yes, I do mean that.

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I’m grateful I wrote this post, because I needed it.  I needed to remind myself that things are going happen.  They are going to be the way they are, no matter what.  I keep trying to bend things the way I want them, I keep fighting to make things happen faster than they are going to, and well, I needed to remind myself…..it’s going to happen, or it’s not, and that’s OK.

Yesterday is gone, I can’t worry about what happened, tomorrow isn’t here yet can’t do anything about it.  So today I’ll do what I can, and that’s it, if something comes up and makes it so things get in the way I’m going to go with the flow and not get all out of sorts.   Just breathe.   It will get done, or it won’t, maybe it wasn’t meant to be.  I’m so very grateful I realize that.

Today’s meltdown averted…..maybe I should have written this yesterday.

 

Me and my blog…..it just is.

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w. holcombe’s heART

After more thought, and feeling much love, I realized hearing the “criticisms” about my blog, and/or me, hit home because I was feeling critical about myself.  I don’t think of myself as a negative person, but I was feeling it, and didn’t even realize it.  My life has changed drastically over the last 4 or 5 years, and the one thing I felt I held on to was my ability to see the best of the situation.  I never asked “Why me?”  I said, “Why not me?”  This is very important to me.  This is a part of my very essence.   I was afraid I was losing me.

Let’s face it, the past couple of years have been very challenging for this household.  Yes, we’ve met these challenges head on, but they just kept coming…..and coming…and coming……..often the solutions have not been as easily forthcoming.

It has been wearing me down.  Much more than I realized.  Not one to dwell on things, I normally allow myself to feel the emotions that go along with a challenge then I make a plan, and deal with it.  “How do I handle this?”  “What can I do?”  “What’s the best way….????”   Unfortunately, many of the challenges I’ve had to face recently have been completely out of my control, or the resolution is not easily obtained.

  • My husband lost his job…..what can I do?  I asked myself that often.  I felt guilty that I couldn’t work.  I tried to get disability and was denied.  (yes I’m appealing, but it’s taking a long time.) Totally, out of my control.  No easy fix.
  • Sandy died.  My best friend.  My constant companion.  I felt lost.  In many ways I still do. I felt guilty.  I felt I let her down.  I know that’s not the case.  The grief has taken a lot out of me.  Out of my control.  No easy fix.
  • I’ve had added health issues.  Out of my control.  No easy fix.
  • My health issues have gotten worse.  Out of my control.  No easy fix.
  • My father was diagnosed with cancer.  Out of my control.
  • ect…ect…ect…….

Yep, I was having a hard time being me.  I’d look in the mirror and think, where are you?  I know you are in there somewhere….come out!   I was ready to hide.  After everything, I felt broken.  And I could not admit that, not even to myself.

I talked on here about my fears, my pain, everything.  I’ve been honest.  However, inside I could not wrap my head around the fact that I was really and truly scared that things would never get better.  No matter how many times I might have said it, and wanted to believe things would get better, the fact that they may not was driving me crazy.  The thought that things would not get any better…..that was just not acceptable.

Then I realized, I’m looking at this all wrong!  I’m thinking too much in the future.  I don’t know what the future may hold.  I have been freaking out over what has been happening, and I have been building up these stories in my mind about how my future might unfold.  These stories have not been great.  This is not a healthy way of thinking!   I cannot live in the future, no more than I can live in the past.  The only place I can live is in the present.  Yes, that sounds very Zen.  Yes, I’ve been reading a lot about this, but it makes sense.  If I’m constantly thinking about what tomorrow might bring, good or bad, I’m going to miss out on today.  That doesn’t mean I can’t make plans, but it does mean I’m not a slave to them and I’m not going to get all bent out of shape if something happens to change them.  It also means I’m not constantly looking back thinking, “I just want my old life back.”  that’s not going to happen, I’ve known that for a long time.  Focusing on the present gives me the opportunity to enjoy my life as it is, without disappointment about dreams that didn’t happen, or romanticizing about a past that I can’t have anymore.

In short, my outlook is changing.   Luckily, so are things around me.  Would my outlook be changing if things were continuing to be spiraling downward?  Yes, I think it would.  I think it has been, I just haven’t been writing about it here as much as I probably should have been.  It’s a work in progress, or to put it more correctly, I’m a work in progress.  I always will be.  So will this blog.

I want to share with my readers, my friends, this side of me.  It is time to share more of the side that is brave, positive, compassionate, and thankful!

Yes, I will continue to come here and speak open and honestly about everything – all of it!  I can’t help it, it’s who I am.  If you would have suggested that I close the blog, I would have turned it private and continued to write, just for me.  This stuff has to come out somewhere!  However, I want you to see how I am handling the rough patches,  how grateful I am for all the little things in my life, and how much I really do enjoy my life….”ants” and all.   But there will be times when I don’t handle things well, and you will continue to hear about that too.  It’s all part of living with chronic illnesses!

I’ve decided to challenge myself a bit.  Each week I plan to write a post called Attitude of Gratitude.  These posts will include things I’m grateful for that week.  These posts may include pictures, drawings, stories, words…..or some times it may just be one word….who knows.   I want to make sure I never let a week go by that I don’t think about things for which I’m grateful.  I try to do this every day, but we all know some days we just get a bit overwhelmed.

You are welcome to join me in this challenge.  We can make it an official challenge if people are interested.   I’m going to do it, for me, and hopefully to inspire others with chronic illnesses to look around and notice the little things that they can still be grateful for.

Thank you all for taking my Poll!  It was an overwhelming landslide that I should continue to write as I do.   I promise I will continue to write as open and honest as always.  I will continue to show the bad and the ugly sides of my illnesses, but I want to even it out and show the more positive sides too.  Yes, there really are some!

I’m so very grateful to have such wonderful friends!  (many who I have never met in person)

The comments and emails I received after my last post amazed me!  Thank you all so very much!

Sending the wrong message??

Illustration New England Boating
Illustration New England Boating

I started this blog because I needed it.

I needed to put a voice to my illnesses.  To help me get through.

I continued this blog because I felt it helped others.  It helped them to know they were not alone.  It helped to know that just because you have a chronic illness it doesn’t mean your life is over.   I thought I was sending a message that said, yes, this is all a part of me and I’m alright with that.  I have multiple chronic illnesses, some are invisible, some are not so invisible.   I work very hard not to dwell how my life has had to change because of my illnesses, I strive to focus on how happy my life is now.

I wanted to help others realize that their lives can be pretty darn great too.

Recently, it has been pointed out to me that I have failed.

Not only have I not succeeded in showing people I am satisfied with my life, I have failed in helping others realize they can be happy with their life after chronic illness hits.

This blog has never been all about the sunshine and roses part of the chronic illness world.  I do talk about every part of my life.  The good, the bad, and the very ugly parts.  I don’t hide.  I don’t want people who are ill to think they have to hide.   I’m beginning to think I may be wrong about that.  I hope not.

The past year….plus….has been extremely difficult for me.  I have had a lot of physical and mental challenges on both the home front and with my health issues.   Of course, these challenges have come across in my blog.  Every time I’ve written about a challenge, anything from my husband losing his job, to my increased vertigo attacks, I have tried to write each entry not just with pure emotion but with simple facts.  This is what is happening, this is how we are dealing with it…ect.   And I always try to end on a positive note.  After all, I really do not feel negative about everything that has happened.   Things happen to people, why should I be so different?   This is my life, illnesses and all.  Life is a gift, I’ll take mine the way it was given and I’ll make the most of it…..I’m learning how as I go.

Someone recently told me that my blog is a place I go to vent.  I agree, I do vent on here, sometimes.  I never thought that was all that I did.  I just went through ALL of my post from January 2013 until now, and I have to admit, if you just look at the surface, most of them do seem like they are simply me venting about what is going on.  Ironically, the past few months many of my posts have not been that kind of post.  I’ve had plenty to vent about, and have posted about some things that I feel were very important…things that should be “vented” about.  However, I’ve also written some pretty light-hearted posts.

I was also told recently that I can be a bit negative.  Well, not in those exact words, it was more like….people don’t want to hear negative things all the time…  I agree.   I didn’t think I was a negative person.  At least not all the time.  Recently, I have had some things to post about that needed to be talked about in a negative manner, for example, when a doctor treats you improperly.  Over all, I believe I have a more positive outlook about my life than negative.   It saddens me if that does not come across.

Today, I wrote someone in my family an email.  I hadn’t written in a while and apologized upfront, explaining that I had been having a rough month physically, but wasn’t going to talk about that and it was no excuse for not writing….then proceeded to write the email informing her of some positive things that were going on.  I soon got a reply telling me how UPBEAT I sounded, and how she hoped I felt as good as I sounded…..ect.   I was confused.  I did mention in the first sentence that my health had been bad this past month, but all she heard was the UPBEAT tone.   hmmmm.  Do I normally sound like a sourpuss?

All of this, combined with a lot of soul-searching lately has made me wonder, am I doing any good here?

Yes, I started this blog just to help me….it was a private blog in the beginning, just a journal.

However, as I learned to accept living with my illnesses I felt my blog blossom into something much more.  I felt it was touching others.  I wanted to help other people know they aren’t alone, and you can have a great life.   (Even if you have a lot of bad days.)

Let’s face it, it is easier to write when I’m having a hard time.  When I’m feeling great, I’m too busy trying to live every day the best I can!  On the bad days, I know my friends are here.

 

So I have a poll for you