Me and my blog…..it just is.

hearts gray scale
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!

Quick update…well, perhaps not so quick..

Thought I'd share a sketch from my journal I drew last week. She looks a little sad doesn't she?

I planned for this to be just a quick update…because I know you are all just sitting at the edge of your seat. haha
but I got carried away…*sarcasm coming*…but that’s just so rare. : )

Stuart had his second interview today, and he had to take a test {shudder}, should know something very soon. (Hopefully today, but no later than tomorrow I would think.)

About me…heck, I just don’t know. Hearing is way down. Not hearing from left ear…although the tinnitus sounding like static woke me up! Don’t you hate that???
Even my right ear is down a bit.
Not having vertigo, but feel off, light-headed. Often feel like I’m about to have a vertigo attack, take meds and it goes away.
Pain is minimal now. The LP site is still tender and has a small welt, but I know that’s because I had 2 within a week.
Still not feeling like I can do much. Mostly in bed. (rolling eyes here…oh, don’t do that..you dizzy headed girl!)
Went to the store, just one mile from our house, day before yesterday. To get one thing. Got home and collapsed, did not feel good at all.
Yesterday I had a couple of visitors for a few hours. It was so nice. A friend and her 1 year old came for a visit. While they were here, I just pushed everything aside, and enjoyed the moment. That child is such a happy kid! It meant a lot to me, I don’t have many visitors.
It wore me out a bit, but it was magical while they were here.
I am so not in the loop with my “friends” any longer. I didn’t know one is pregnant. (well, really I’m not friends with her, but her husband used to be close to us, before they got married…it’s strange) She’s due in February.
I didn’t know another couple had their child last week. Are these people really my friends any more? I just don’t know….

I hate to admit it, but I’ve been pretty depressed lately. I keep telling myself that I’ll take things as they come, and just roll with it. If life isn’t what I expected, change my expectations. But having the hope…the reprieve from all of this for months, and then it all coming back…well, it’s hard. I’m grieving, I know it. Does that mean I’m giving up? I just don’t know.

Those who have been reading my blog for a while know all the major plans I had when I was better. I really thought things would stay that way! I bought a car!! The cutest car in the world. Now, I can’t even drive it. I stated gardening, and it mostly died because I couldn’t keep it up. I was going to be a Mom. Now I won’t.

I wasn’t going to talk about all of this. I’m still hoping things will get better, but some of these things won’t change. No matter how much better I feel again, I will not pursue getting a foster child. I cannot take the chance it will happen again. I’m not even sure I’ll commit to a garden again. Too much expense, time, and effort to just watch it die.

The hearing loss, do I move on and find a way to live in the non-hearing world. I’ve joined an email group that is composed of people with severe or total hearing loss from Meniere’s. They all seem so well adjusted. But some things are so hard to hear. Most have no friends from before their hearing loss, only friends that they’ve met afterward. I simply don’t want to be to the point that all I hear is this damn noise in my head!
The other day i laughed, I had been all teary about things I can’t hear, like the cricket and things chirping on a summer night…then I realized, I hear that sound a lot, even when they aren’t around. I had to laugh. It’s the only way sometimes.

I was able to connect with my Psych today via email. I told him how I felt about things. How depressed I am, and all that stuff. He doesn’t normally use email because of the lack of confidentiality. Yeah, I don’t care who knows about me and my stuff. I know it’s ethical, and he should be that way, but certain concessions must be made for the hearing impaired! Dang-it! We’ll see how this turns out.

Once again, I’ve bared my soul.

thank you all for listening.

Another Possible Chronic Condition – SVT

I saw my neurologist yesterday as a follow up for my migraines.  Since I’m having another lumbar puncture next week, she decided to wait on adjusting my medication.

She asked me if I’ve fainted recently, and I told her about my near fainting episodes last week.  Sometimes I’ll have a rapid heart beat for no reason.  You may recall my post about Halloween night last year, “Guess What I did Last Night”.  (It about a trip I took to the ER because of my rapid heart rate.)  Last week I had two of those episodes, however, with these I nearly passed out both times.  That hasn’t happened before, and I don’t normally have them so close together.  One time I was lying in bed reading when it started, when I was at the ER they told me to put cold water on my wrist and/neck when this happened and it should help.  So I got Stuart to get me a wet wash cloth, but it wasn’t very cold, so I got up to run water on my wrist in the bathroom…and the world started to go dark.  I could feel me passing out and just laid down on the floor real fast.  Soon it past.  When I got back up and in the bed my heart beat had slowed down.  A couple of days later I was taking a bath, and it happened again.  I tried running water on my wrist and started feeling like I was going to pass out.  I ran cold water on my head, and it helped.  But now I realize just how dumb it was to stay in the bath when I was feeling faint.  Yeah, not bright, I know.

After hearing about these incidents, my doctor thinks I may have Supraventricular Taachycardia (SVT).  But it’s hard to definitely diagnose this because once get to the hospital the episode has often passed.  Next time it happens, I’m supposed to make sure and get a heartbeat count.  Stuart tried this last time, but he lost count because it was going so fast.  He thinks it was between 140 and 160 beets per minute.  I’ve tried counting it before and got about 200 beats per minute.

This is often not a serious condition and doesn’t need any treatment.  However, my doctor is concerned because of the faint feelings I’ve been having.  That could be dangerous, or signal that this is something a little more serious.

Right now, I just have to wait for another episode, and take good notes.

She also saw Stuart today because of his episode.  He will be going in for a EEG to check out his brain waves.  She wants to rule out a seizure.  That could make it hard for us to foster/adopt.  But I’m much more concerned about his health and safety.  She admitted that she sees many people who have strange episodes happen just once, and they can’t figure out what happened, and it never happens again.  She just wants to rule out some things.  She also mentioned that he could be having a certain type of migraine.  It would cover the symptoms he had, and you don’t have to have a bad headache to have a migraine.  We’ll be keeping an eye on him for a while too.  The EEG isn’t planned until late this month.

Being a better Advocate – updated

little butterfly on my Echinacea plant

I’ve always said that we must be our own best advocates.

We need to find out as much as we can out our illnesses, and make sure the doctors we choose are up to date, and caring.  For me, I like doctors who will think outside the box.  Who try empirical evidence, instead of thinking the normal is normal for everyone.

It’s also very important to make sure your doctors understand what is going on with you.  That has been a hard thing for me lately.

I didn’t want to admit that I’m not doing well.  I have been so happy with the results of the CSF patches, that I didn’t want to think that I might be taking a step backwards.  I’ve been keeping my doctor advised of my situation, but I have been downplaying it.  Stuart says I haven’t even been honest with myself.  I haven’t admitted that Meniere’s has been ruling my life again.   No, I haven’t been having full-blown attacks, but I’ve been feeling so bad that I spend most of my time lying down or sleeping.  I got the Wii Game Just Dance this week.  It’s so much fun, but every time I try to do it, I end up having mini spins and spending hours just wanting the world to be still.

So today I sent Dr. Kaylie an email, and told him just how much this has been affecting my life.

I realized that I have not been taking my own advice.  I have not been a good advocate for myself!  That is going to stop.

If I don’t hear from Dr. Kaylie by tomorrow I will have Stuart call his office.  (Yes, Stuart.  Another way this is affecting me?  I can’t really hear on the phone very well.)  I’ve also decided I don’t feel comfortable driving.  Feeling a bit drunk all the time, is not the way you should feel when you are driving.

I feel much more empowered now.  Just speaking up, and telling my doctor that I’m disturbed by what is going on, made me feel like I was doing something productive.

**update** Dr. Kaylie emailed me back, and a copy was sent to Dr. Gray (Linda).  He said, “It might be a good idea to get another myelogram.  What do you think Linda?”

I’ll keep you posted on the outcome.

The Meaning of Health.

One of the first things I need to do on my journey to better my health is to define the meaning of Health. Look at each part of the definition, and see if I already fit in to it, or decide what I need to do to get to it.

Most people define Health as the absence of disease. If you aren’t sick, you are healthy.
However, according to the World Health Organization:
“Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.”

The American Holistic Health Association describes 4 aspects of one self and each aspect must work in harmony for the whole to be healthy.

  • The physical you requires good nutrition, appropriate weight, beneficial exercise and adequate rest.
  • The emotional you needs to give and receive forgiveness, love and compassion; needs to laugh and experience happiness; needs joyful relationships with yourself and others.
  • The mental you needs self-supportive attitudes, positive thoughts and viewpoints and a positive self-image.
  • The spiritual you requires inner calmness, openness to your creativity, and trust in your inner knowing.

We are responsible for our own health! So many of us have grown up believing that our health is in direct correlation with the health care we receive.  However, we are the only one who can make the lifestyle decisions that create well-being (or health).

The American Holistic Health Association has developed a quiz to help you determine your current degree of wellness.  (Let’s see how I do?)

Wellness Quiz

  1. Do you wake up with enthusiasm for the day ahead? (very often not.  I often wake up and think, what’s the point.  I can’t do anything….but I try, every day, I try.)
  2. Do you have the high energy you need to do what you want? (very rarely)
  3. Do you laugh easily and often, especially at yourself? (yes, most of the time I find it easy to laugh at myself and other silly things in my life.  This is why I watch cartoons.)
  4. Do you confidently find solutions for the challenges in your life? (I’m trying very hard to do this.  Sometimes I get overwhelmed, but I’m trying.)
  5. Do you feel valued and appreciated? (I feel loved.  Valued and Appreciated?  I don’t know.  I think my husband feels these things for me, I just often don’t see why.)
  6. Do you appreciate others and let them know it? (I do try my best to let others know how much I appreciate them and care for them.)
  7. Do you have a circle of warm, caring friends? (I think so, but lately I’ve been feeling like that circle is getting smaller.)
  8. Do the choices you make every day get you what you want? (I don’t know.  Sometimes I think they do, other days, no I don’t think so.  So I’d have to say, the choices I make on some days get me closer to what I want.)

“If you answered “no” to any of these questions, congratulations! You have identified areas in your life that you may want to change. This can be valuable information.”

So I have some work to do.  Of course, that’s why I’m here.

Any Suggestions?

I enjoyed reading and getting much of this information from AHHA web site. I’m sure I will refer to it many times in the future.