Month: March 2018

Getting Really Real About Chronic Debilitating Illness: Sometimes We Need Help

I’ve been reading a new (to me) blog this week, written by a person with multiple chronic debilitating conditions.

This post, in particular, struck a chord.

So few people understand how isolating a chronic illness or other disability can be – especially if it includes severe allergic reactions to “everyday” substances like fragrances, chemicals, dust, dander, mold, pollen, or food.

As a disabled person’s world shrinks, their social network, family, and close friends becomes ever more important, if they are so fortunate as to have any or all of these.  In the author’s words:

Having our basic needs met makes the difference between living well with pain and illness and merely existing.

I am very grateful for all that Spousal Unit does for me, even on the days when I feel too awful to express my gratitude or affection.

I still fight, many days, to live well rather than merely existing.  Without Spousal Unit’s care and assistance, I’m not sure how long I would even continue to exist – basic needs like grocery shopping, cooking, cleaning, or getting to doctor’s appointments are often just too difficult to accomplish by myself.

Who do you know that might be isolated?  Falling through the cracks?  Barely keeping their head above water, or a roof over their head?  How can you help?

A text, an email, a call, a card, a visit – all mean the world to someone who’s “shut in” and isolated.

A ride to the grocery store, or to a doctor’s appointment, could mean the difference between living well and not eating nutritious meals or not getting necessary healthcare.

Offer to pick up something from the drug store, or grocery store, or a restaurant for them.  Or give them a gift card for Wal-Mart or Amazon or someone else who delivers goods they need to their door.

It’s too easy to become too busy and not make the time to help others.  You can’t do it all, but try to find ways to help someone else who can barely do anything.  It might mean the difference to them between living well, merely existing, or ceasing to exist at all.

P.S.  Sometimes non-disabled folks need love too.

Ode to a Tie-Dyed Rory the Raccoon T-Shirt

Rory, in all his unhinged glory

Once upon a time, there was a deranged-looking (or Furiously Happy) ethically-taxidermied raccoon with jazz hands named Rory.  (The raccoon was named Rory, not the jazz hands because that would just be weird – plus, each hand would require its own name, no?)

Rory became a book cover, and he became one of the mascots of The Bloggess and her tribe.  Rory is our mascot because he is, in The Bloggess’s own words, “broken in just the right way.”  His image now appears in many guises, including buttons, keychains, and apparel.

Several months ago, I purchased various items of Rory Wear to bolster my morale.  I am a chronically and debilitatingly ill veteran who is desperately fighting to complete graduate school, and I thought Rory Wear would lift my spirits and encourage me to continue the battle.  (Spoiler alert: It does.)

My particular favorite is the tie-dyed Rory t-shirt.  (Some of you will be familiar with the tie-dyed Rory the Raccoon t-shirt, thanks to this post.)

This shirt is like a ray of sunshine blasting through the darkness.  Even if you feel like this, when you get a glimpse of Rory (with tie-dye) in a mirror you will feel a jolt of amusement.  You will remember (I hope) that #DepressionLies and that you don’t have to be miserable, even if your life truly sucks (right now).

Another benefit of wearing a tie-dyed Rory t-shirt I just realized today, as I was dragging my broken and decaying body to the VA clinic, and it is this: no matter how bad you think you may look, you will probably not look as deranged as Rory; therefore, you cannot help but look better in comparison.

Also, the tie-dye is great body shape camouflage. 😀

So I rock my tie-dyed Rory the Raccoon t-shirt to remind myself to look for the good, look for the amusing, look for the joy, and fight to be #FuriouslyHappy.

(If nothing else, you’ll give other people something to talk about – “Dude, What is *up* with that shirt?”)

NOTE: Although it may sound as if I have received complimentary Rory Wear or been compensated in some way, I assure you that I paid for all of my Rory apparel out of my own pocket, no one asked me to endorse it, and The Bloggess is blissfully unaware of my blog and its contents.  However, I *absolutely* endorse these products!

If you want your very own Rory apparel, you can find it here.  This is not an affiliate link, and I will receive nothing.  All proceeds go to support the lovely and talented Bloggess, Ms. Jenny Lawson.

NOTE: For those of you who do not know yet, Furiously Happy is Jenny Lawson’s wonderful book about dealing with mental and physical illnesses and choosing to find happiness.  You can read more about it here.

NOTE: There are approximately 160 different styles of shirts.  Read the details for whichever shirt interests you.  The tie-dye shirt is 100% cotton, and does not irritate my allergies.  However, many of the shirts contain synthetic materials.  YMMV.

 

Buyer Beware: Did You Know Bad Doctors Can Skip From State to State and Keep Practicing Even If Their License Has Been Restricted in Another State?

Research your doctors carefully.  Several years ago I refused care from a surgeon (at a military clinic) who had a similar story to this doctor – malpractice suits and complaints in several states, and medical board action in at least one state, but licensed to practice in his current state.

When I expressed alarm about his long history of dissatisfied/disabled patients, other physicians at the military clinic told me that was in the past (IOW, they knew about it, but did not care.)

What tripped my alarms about that surgeon? He refused to stop hurting me during a pre-surgery exam, even though I specifically and loudly said “STOP! You’re hurting me!”

He also told me that if my surgical site developed internal scar tissue, it was his practice to anesthetize patients and then yank violently on the limb to tear apart the scar tissue in the joint.  In response to which, I thought”YOU ADMIT THAT???  No, thank you!  Brute force and ignorance is NOT my preferred approach!”

BOTTOM LINE: If I can’t trust my doctor or surgical team when I’m awake and able to advocate for myself, there is NO WAY I would trust them when I’m unconscious. Trust your instincts, and do your homework. You’re the one who lives (or dies) with the consequences.

NOTE: For information on avoidance of internal scar tissue and standard practices for internal scar tissue removal see this article,  this article, or this DIY video/article [I am not endorsing this product].

You will note in the second article that “manipulation under anesthesia” is a valid technique for dealing with internal scar tissue, but only AFTER gentler, non-invasive techniques have been exhausted.

 

How to Read an X-ray (or at least understand what the doctor is saying about it)

Prior to this most recent surgery, the ortho said something I didn’t quite understand during my last appointment.  He looked at the new x-rays and said that the surgical screw in my wrist was loose, and that the lucent areas on the x-rays were an indication of that.  I didn’t really know what that meant, so I went searching on the internet, and I found this webpage that explains how to read an x-ray.

Your doctor might not actually show you your x-rays (mine always does), but, if you read the webpage, you should have a better understanding of what your doctor is telling you about your x-rays.

This part explains the basics pretty well, I think:

“The first principle behind knowing how to read an x-ray is knowing how different parts of the body will absorb an x-ray. This absorption falls into three basic categories and they are:

  • Bone – appears light grey or white because it absorbs a high percentage of the x-ray (metal is pure white)
  • Tissue – appears a greyish color because it absorbs some but not a majority of the x-ray (water or fat, for example)
  • Air – appears black because it absorbs a very low percentage of the x-ray (gas, for example)” – https://www.npinstitute.com/how-to-read-x-rays-s/1860.htm 

Unfortunately, this webpage doesn’t talk about lucency.  However, this other webpage explains that “the term ‘lucency’ is a technical term for an area that lets X-rays through the tissue and as a result appears darker on the picture.”  In other words, “lucency” is doctor speak for x-rays being able to pass through a part of your body, thus appearing black.  So, in radiology terminology, “lucent” means dark, not light, which is why I was initially confused.

My understanding is this:  Rather than a white area (bone) around the screw, showing that the screw was tight in the bone, my ortho was seeing dark areas (air) around the screw, showing that the screw was NOT tight in the bone, i.e., the screw was loose.

Does this clear up x-rays for you too, or do you still have questions?

 

Post-Surgery Status Update

Surgery went very smoothly.  It was a quick and relatively painless procedure [post pending].  I did not feel loopy or drowsy afterward, and had a perfectly normal afternoon following surgery.

Now that I have learned the benefits of frequent icing post-surgery, I use significantly fewer painkillers.  Don’t get me wrong – you should definitely use them if you need them!  I took painkillers at the minimum allowed interval for many days after my SLAP repair – that recovery was brutal.

But I have found frequent icing, elevation, and Tylenol to be sufficient for my last two surgeries.  However, it must be said that I have always had a high pain tolerance, which has increased even more after nearly two decades of migraines.

Manage your pain responsibly, and in the way that is optimal for you, in consultation with your doctor.

So now I’m in a soft cast for two weeks, and sleeping in a sling at night to protect my wrist – never comfortable or convenient, but a necessary evil.

I have to say I am incredibly grateful for arthroscopic surgery – it makes the procedure so much less invasive and the recovery so much easier.

I realized as I was in-processing for surgery that it has been four years since the initial injury.  I strongly hope that this will be the last corrective procedure, and I can finally put that incident behind me!  Beware slip and fall injuries!

WARNING: If your prescribed painkiller includes Tylenol (acetaminophen), do not take additional over the counter Tylenol (acetaminophen).  Pay close attention to daily dose limits.  Exceeding the daily maximums can cause liver damage.

I take Tylenol instead of prescription painkillers, NOT in addition to them.