Chronic holidays

The holidays are a great time of year: gathering with family, eating good food, spending time with friends. Still, they can be rough on those of us with chronic illness. Gathering with family can be stressful, with fights, tension and potentially seeing people you wish you weren't related to. Too much eating can lead to weight gain. All of it can mean pushing yourself past your limits. It can be a disaster.

After 6 years of chronic illness, I am still trying to learn how to enjoy the holidays as I did in years past.  Here are some things I think might help.  Limit your stress as much as possible; I know that can be hard with traveling, seeing relatives with whom you may not get along and demands on your energy when you may not have all that much to give. It's also hard when you love to decorate the inside and outside of your house.  But keeping everything in perspective is essential. Maybe you don't get out ALL of the decorations or don't expect yourself to get all the decorating done in one day.  Maybe you don’t go to every holiday party to which you’re invited. Maybe you let other people cook the big show-stopper dishes. Maybe you plan in naps during all-day family affairs.

This year it took me 3 days to decorate my Christmas tree (instead of the couple of hours it use to take me).  And this year I asked for help!  My husband has been awesome!  Thank you honey!!

Now I know you are looking at these pictures saying, good grief, scale that thing back, Annette.  I really would, but I love it too much and it truly brings me joy! And somehow that joy makes me feel just a little bit better!

Eating as well as possible is so critical, too. I know it’s tempting to have two or three helpings of all that deliciousness, plus a few slices of pumpkin pie for dessert. Bad idea. A good way to prevent overeating is only allowing yourself one plate. Whatever I can fit on that plate, I can take. No seconds. But I’m sure there are lots of other ways to keep from eating too much.

But, really, all the holiday tips in the world boil down to one thing: Take care of yourself. It’s not worth working yourself into a frenzy and hit every holiday high note only to be flattened for days or weeks afterward. My advice? Do as much as you can. No more. The holidays are no less special if you spend a few evenings basking in the glow of a Christmas tree, listening to carols on iheartradio and sipping on hot apple cider or hot peppermint chocolate!!

My very best wishes to you all for a
Merry Christmas and Happy New Year ~ love Annette

survive the journey: Martha's Story:

survive the journey: Martha's Story:: Martha, it was way too soon, and we will miss you. Stacey and Martha had been together for 11 years. During most of those years Martha strug...

When your spirit feels like crying

Thanksgiving day - 2012:  Do you know how to be thankful? I think, typically, we compare ourselves to others. We count our blessings, because we know some people have much less. We tell people we love them, because we may not have them beside us someday. We may even do a random act of kindness, because we have needs that no one notices, so we try to notice another’s needs. And we think about how we could be worse off, how we need to stop complaining.  Is this how we should approach "being thankful?"  I don't think so.

Here's what I have realized ... when we compare ourselves to others. . . we always end up not really feeling thankful in the end.  I have found that the only way to realize how to be thankful is to understand the gifts that God has given us. That seems easy to say ... but it is not easy to do when your spirit feels like crying.  My spirit feels like crying a lot lately!  Can we overcome those feelings, especially on days like today - Thanksgiving?  I say yes!!  Here's one way:  focus on the people, places and things for which you're grateful. "Count your blessings and you will find them to be countless, even in the midst of adversity and tragic circumstances," say Robert A. Emmons and Joanna Hill in "Words of Gratitude for Mind, Body and Soul." 

In 1 Thessalonians 5:16-18 we read:

16 Rejoice evermore.

17 Pray without ceasing.

18 In every thing give thanks: for this is the will of God in Christ Jesus concerning you.  

As I look at the above scriptures in 1 Thessalonians, I find that our joy, prayers, and thankfulness should not fluctuate with our circumstances or how we feel. All too often these three commands – be joyful, keep praying, and be thankful – goes against our natural instinct to lash out and be the exact opposite.  The key point is to make a conscious decision to obey God’s Word – whether we “feel” like it or not, and in so doing we begin to see things in a new perspective. When we make a practice to obey God we will find it easier to be joyful, prayerful, and thankful.

             Few things in the world are more powerful than a positive push. A smile.
              A word of optimism and hope.  A "you can do it" when things are tough.
               ~Richard M. DeVos

Look to the practice of writing down what we are thankful for every day for the positive push Richard DeVos talks about above.  I believe if we (I) do this, we will begin to have a grateful heart and realize that there are more things in our lives to be thankful for than there are to complain about. In so doing we become a more joyful person to be around and we will find it much easier to pray for one another as well.

It may take baby steps at first to find something to be thankful for – but “you can do it!”

I am thankful for a loving husband, beautiful children, parents and family members who love me and support me through the midst of my trials.  Life is still beautiful!!

What are you thankful for today?

Abnormal Mammogram

Well fluff....dang if I haven't put off having a mammogram for years and I finally go and get another one and I got the call.  Today at 4:50 pm, my OBGYN's office called to say I had to come back for some abnormalities in both breasts and that they would need to do an ultrasound. The nurse reassured me they hadn't found actual lumps, but given my recent health issues, I have to admit that tears were rolling down my face as she gave me the phone number to call for scheduling. I was scared. How not to worry myself to death about this too!!  Good grief!!

I'm going to call tomorrow to schedule my second testing. Sure hope this one comes back negative, you know, I'd like to not have breast cancer on top of everything else!

Annette

Why I'm Writing (A Chronic Illness Blog)

I have found writing to be enjoyable in the last several months as our country went through the a presidential election process and as I have moved toward a diagnosis after years of illness. I feel that recording the journey from this point forward, will be beneficial to me and hopefully to someone else as well.  Any writing I have done prior to this was either just about myself privately or public Facebook posts.  I think it’s a big step to share your whole story publicly, regardless of the topic.

I didn't even know what blogging or a blog was before I got sick.

I have thought about sending out weekly e-mails to a list of family and friends but I think a blog would be much more user friendly.

I am hoping to have an “official” diagnosis soon.  I have been floundering for the past 8 months, or so, as my health has been rapidly declining.  Physically, I am in pain and feel like I have been hit by a truck.  Emotionally, I feel like I have been steamrolled.  Some would say I am not in a good place.  I have to be honest - my faith is challenged the longer my illness continues.

For years, I have been open and honest about my illness experience.  I have had a no-holds-barred approach, sharing details, maybe to a fault (mostly on Facebook).  In some ways that has had an impersonal feel to it when it comes to my family finding out how I am feeling or when I have gone to the doctor.

The thing I like about this "new" blogging ability is that, at least as far as I'm concerned, it is happening in real time (new to me anyway - I am getting old).  My thoughts and feelings will be documented, sometimes looking back, but mostly as they are occurring.

So I am going to start writing about my illnesses as a way to keep the people in my life abreast of what was happening to me, as phone conversations and in-person meet-ups aren't necessarily often enough to have people stay current and not be overwhelmed by information.

Recently, I have found that writing can be food for my soul.  When I have sat down and wrote the heck out of something, it has made me feel better.  Writing seems to have helped me to express my thoughts in a way that other types of self-expression haven't.

As I have begun reading different blogs of people dealing with illnesses similar to mine, I can see that blogging might help me remember that I am not the only one in the world that this is happening to.

So far I have met several wonderful and amazing chronically ill people.  I have seen that illnesses are not a result of inherent personal failings, but some happenstance flip of a switch or roll of the dice.

I am grateful to have found this medium because I believe it will help me document things.  I know that a few years down the road I will be glad to be reminded of the many experiences I have, even when I don't remember the particular instances by heart anymore.

I will be writing for you.  And I will be writing for me.

A better, funnier scale to rate your pain

Patients are typically asked to rate their pain, usually on a scale of 1 to 10. On the one hand, this is an essential pain research and clinical tool, with proven value. On the other hand, the pain scale is a source of perpetual confusion in health care offices throughout the land. It sounds so easy: just rate your dang pain!

But people are often stumped by the question, or they over think it.

Is #10 reserved for the worst pain we have ever experienced, or the worst pain we can imagine?“I don't know, I can imagine quite a bit.” Can we ever really know what someone else’s pain feels like? (No.) If pain fluctuates, do we take the average? For really horrible pain do we go off the scale? Or re-calibrate?

People like to go off the scale; drama is fun and exaggeration is always fun. I remember when I was having my first child who was 9 lbs. 9.3 oz ... after the epidural had worn off and I had to start pushing ... I think, when asked, I told the doctor my pain level was like 19 with spikes to 38.

Speaking of pain exaggeration, the old pain scale chart has been hilariously lampooned by Allie Brosh of the snarky blog Hyperbole and a Half, which is the point of this post. Everything I've said so far here is just an elaborate set up for a link to an article that I enjoyed immensely. And I think you will too!!

Ms. Brosh had previously noticed this visual aid in a doctor’s office:

"A typical chart as seen in most doctor's offices"

“You may also have noticed how inadequate it is it helping you,” Brosh says. Her interpretation of what number 8 seems to be thinking: “The ice cream I bought barely has any cookie dough chunks in it. This is not what I expected and I am disappointed.” So Ms. Brosh did her own pain scale. Here’s her new, improved, face-I-make-when-I’m-at-8-on-the-pain-scale face:

“I am experiencing a disturbing amount of pain.

 I might actually be dying. Please help.”

Now that’s more like it! No ambiguity there! Brosh’s pain scale is both useful and so funny that you will spray milk out your nose...assuming you drink some milk first. Brosh's made a new pain scale with all the numbers:

0: Hi. I am not experiencing any pain at all. I don't know why I'm even here.

1: I am completely unsure whether I am experiencing pain or itching or maybe I just have a bad taste in my mouth.

2: I probably just need a Band Aid.

3: This is distressing. I don't want this to be happening to me at all.

4: My pain is not messing around.

5: Why is this happening to me??

6: Ow. Okay, my pain is for real now!

7: I see Jesus coming for me and I'm scared.

8: I am experiencing a disturbing amount of pain. I might actually be dying. Please help.

9: I am almost definitely dying.

10: I am actively being mauled by a bear.

11: Blood is going to explode out of my face at any moment.

Too Serious For Numbers: You probably have ebola. It appears that you may also be suffering from Stigmata and/or pinkeye.

So the next time I go to the doctor I'm taking this new pain scale with me. It should be interesting...hopefully my doctors will see the humor but also be able to discern the incredible amount of pain I have been in for so many years now. It should be an interesting visit!

Sick and tired of being tired and sick

It is attacking me. It is gradually taking over my body and changing my appearance and I have wondered for years now if I was going crazy? I thought I just needed to work harder on my diet and exercise, I thought it was just me getting older. It has weakened me physically and mentally. It has had many many disguises; pre-diabetic, high cholesterol, TMJ, A-typical Meniere's Disease, A-typical migraines, insane weight gain, snoring (sleep apnea), rosacea, blood pressure changes, peri-menopause, unexplained aches and pains, including tinnitus 24/7; electronic shock sensations behind my eyes and in my brain that blur my vision and disorient me when I hear a loud noise, move my eyes or turn my head and a whooshing noise when the electronic shocks zap me; as well as a feeling that I am moving all the time (like in an elevator or on a boat), vertigo, muscle weakness my skin feeling like it is on fire, instantaneously starting to sweat even when it is freezing and I am sitting in a chair doing absolutely nothing. I am so fatigued that I can't even get the energy to make my bed or do the dishes. I am irritable and my mood swings are just crazy!

It has tricked doctors and made me look bad. It is evil and nasty and is stealing my life away from me. What is this horrible monster? Its name is Cushing’s Disease. Rarely diagnosed ... I'm told most doctors will not ever come across a case of it in their careers. Unusually high levels of the hormone cortisol are the telling sign.

It seems this monster has its claws in me. So many doctors in the last six years who haven't listened to me, who haven't read the list of symptoms I give each one of them, who haven't taken notice of a crying patient begging for help. Just a shrug of shoulders over and over and over again saying there was nothing conclusively wrong with me. And now the real battle, getting it fully diagnosed and treated. A doctor finally saw the signs. So here we go. Do I have the strength to get to the other side of a diagnosis after all of this?? ... I just don't know. I'm so tired and sick.

Just a few weeks ago, my internist found abnormal cortisol levels in three different blood tests and believes I have Cushing's Disease. She faxed my file to MD Anderson Cancer Center in Houston on Thursday, November 15th and I now have to wait for them to review my file and wait for them to qualify me for their services.

So there you have the background of this new blog. I wish I had started journaling or blogging years ago as I think it is important to be able to remember the journey. My prayer is that this journey leads to better health and happiness for me and my family!

As to the clever title of my blog (if I do say so myself) - I Ate a Monster Onion... and now look what I look like!!  Just need a few tears falling down and this would be a perfect depiction of me (lol).  I thought the blog title was appropriate as onions have layers and I think a person is like an onion, as is his or her illness. Illnesses have layers, and they are not unlike onion layers.

First of all, look at an onion. Onions come in all sizes and several varieties. There are bitter onions and sweet onions. There are large onions and small onions. There are white onions, red onions and brown onions. Sort of like people, I guess.

Most people believe doctors are “medical detectives.” People develop illnesses, which are like “medical crimes” and the doctor’s job is to solve the crime, make the diagnosis and cure the patient.

I believe doctors are more like onion peelers. The patient presents with an illness, represented by the whole onion and the doctor’s job is to peel the layers of the onion off till he or she gets to the center of the onion where the correct diagnosis is identified and treatment is started.

Wow, have I eaten one seriously massive Monster Onion?!?

Now I seek the other side of a diagnosis and what happens from there. We shall see!