Two Steps Forward and One Step Back?

Below is an excerpt from an e-mail I wrote to a friend today.  I work with clients a lot on dealing with the "down-days" typical of people recovering from brain injury.  These days can make them feel like they're never going to progress from where they are now.  Now I need to coach myself on that very point!

I'm a little down today---actually more than a little, as I'm physically so tired it hurts to walk to the kitchen. I rescheduled everything on my calendar, including two sessions with clients, which I really hate doing.  I know my clients really get geared up emotionally for our appointments, and so do I, and it's hard to need to cancel.

There are so many things I want to do of a business sense, and I can't seem to do those and lead a personal life that feels fair to my loved ones, including you.  I know that I only have about 8 productive hours a day versus about 12 for most people, but it feels like those hours are shortening, rather than lengthening.  I wonder if it's the constant hip and scalp pain that wears me down (indirectly caused by brain injury,)  or is it still direct effects of brain injury, or aging, or ????

  

I try to minimize the things that I know are tiring, like the telephone & listening to a lot of bad news on the radio/tv and being in noisy situations.  I'm also trying to give my family  and friends "health information" through this blog, so I don't have to continuously repeat my health stories, but that doesn't seem to be working so well.

I start vision therapy testing next week, and I have an appt. with the hip doctor tomorrow to decide on my course of action, so those should help.  I also plan to start looking around for somebody who can help me with the hyperacusis (hearing problem.)  I have several acquaintances with the same problem, and they haven't been able to find anybody, so I'll have to do some real networking to get that figured out.

This morning, I couldn't remember the names of some common things like "the thing you cook meat on outside," i.e., barbecue grill or where my doctor's office is or the name of our cat Black.  I kept calling him Frazzle,the name of a family cat who died a long time ago.  When I have that brain fog, it's both frustrating and scary.

Since I learned the hard way about using narcotics to control pain---Don't!---See my February 4 and January 14 postings, above---I need to figure out what to do about the hip pain.

I went to a second doctor about that pain, & he turned out to be wonderful---a great listener, intelligent question-asker, and very thorough.  He's not sure that the pain in my hips is actually caused by the tears in the lining of my hips (labrum) and in my big butt muscle (gluteus medius), or by my hip joint.  He's wondering if the pain may actually be coming from the scolios (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002221/) in my lower back, which has been chronically painful for 20-30 years.  He said that most people, by the time they're my age (66), have labral and gluteus medius tears---not as bad as mine, but tears!

Today I went for an injection into my Right hip to numb it so we could see if that took care of the pain.  It did!  In fact, I hadn't realized I had so much pain until I didn't have it for that hour or so.  But it didn't help my left hip or lower back pain.  I also had an MRI of my lower spine.  I'm hope, hope, hoping that I will get some answers  to the pain so I can get started with whatever's next!

So, what does all this have to do with traumatic brain injury (TBI)?  I'm still convinced that my October 2010 fall & consequent TBI, which wrecked my balance, is a prime suspect in my present pain.  After all, I did walk a 1/2 marathon in June of 2010, with no pain at all.  When I started trying to go for long walks in March of 2011, I couldn't get a block without pain.  I think my efforts to stay upright made already existing tears in my hips worse.

The more I deal with Brain Injury, the more I understand how complex and all-encompassing it is.  It's not just your brain that is changed---it's your whole life balance, including your physical, emotional and spiritual self.  That doesn't have to be bad---it's just different!!  And it takes a lot of getting used to!

I’LL TAKE THE PAIN!

I knew when I started taking the morphine that I might be moving toward being in worse shape than I was without it. I didn’t know I was rocketing toward a horrible situation.

By the 12^th day on twice-daily low levels of morphine, I had put on 13 pounds. At first the weight went primarily around my middle. In that time, I went from almost fitting into my “skinny pants” (with the help of weight-watchers) to only fitting into my “fat pants” to needing only elastic waist fat pants. That was on about the tenth day of the morphine. I was trying to pack to go on a 2 week cruise, and it was quite a chore to find clothes that might fit if my waist got larger, or that would fit if it started to reduce in size.

On the thirteenth day, the second day of the cruise, I noticed some swelling in my legs, ankles and feet. That night we went to dinner with some people we’d met on the cruise. By the time dinner was over, my feet and ankles were thrice their normal size, my shoes didn’t fit, and it was even painful to walk!

On that same day, I’d signed up for eight acupuncture sessions with a ship acupuncturist. I think my plan was to try to use acupuncture to manage the morphine symptoms. What I know now is that my thinking was reverting to “immediately-after-mild-brain-injury-muddy-thinking.” It’s like looking through a sheet of muddy water. I can occasionally see something enough to remember it, but most of the time my thinking is muddy!

For example, with muddy thinking, I might realize that I need to turn left or right to get somewhere, but I can’t remember which is right and which is left. I might realize I need to push an elevator button to get to our floor, but I can’t remember how to push the button, or that 5 follows 4, in order to get back to my room. I know that to buy something I need to go up to the register, but I don’t know what to do once I get there, or that I need to sign my name if I’m using a credit card. In short, I’m incapable of managing on my own.

The swelling of my feet and ankles shocked me. I remembered a friend telling me her sister’s legs, ankles and feet were so chronically swollen she could hardly walk.

That night, I decided to go cold-turkey off the morphine. I hope my thinking was that I could do it safely because I was signed up for the acupuncture sessions to help support me through the process. That night, the violent diarrhea started. It continued through the next day and into the night. To add a bit of sick humor to the situation, both nights our toilet clogged up. Jack called and the ship sent plumbers quickly, before my situation forced me resort to using the bathtub, which I was considering!

My headache was deep and powerful. I had some Vicodin with me, but I was determined not to use any prescription narcotics as crutches. And I’d forgotten to bring any Tylenol! I always carry Tylenol! Jack went to the medical center and got some Tylenol, which helped a little.

By the third day off the morphine, I’d lost 7 kilos, or 13.2 lbs. (I know this because I weighed in the gymnasium on the first day on the ship.) And I can write this blog posting because I kept notes on what was going on with me. Otherwise, I wouldn’t remember most of this enough to relate it to you.

I don’t know, however, if I was thinking that acupuncture would provide me the support I’d need to get through the morphine withdrawal. I didn’t keep notes on that. But the acupuncture has helped immeasurably. Today (Tuesday, January 17, 2012), Justin, the acupuncturist, concentrated on my headache, and it is greatly improved. Yesterday we concentrated on eliminating water retention. And ironically, the first day, before I went off the morphine, we worked on pain from the hip muscle/tissue tears. And it’s not as painful as it was before I went on morphine, but I haven’t been moving around much, either.

Gone to Hawaii!

I'm leaving today for a two week cuise to Hawaii.  Hawaii is the only state  I haven't visited, and I'm excited.  We'll be at sea about 9 of the 14 days we'll be gone, so I'll have lots of tilme to read.  Reading and writing are two of my favorite things to do.  I may not be making any more posts until we get back; it depends on where I find internet access.

I'll miss writing for you!

I'm happy to report---

that the slow release morphine is doing  wonders to mask my hip pain.  In fact, I'm ecstatic about it---that pain was making me wonder if I should mozy down to the Hemlock Society http://www.assistedsuicide.org/farewell-to-hemlock.htmlfor a consultation!  I'm only half-joking; the pain from every movement I made, plus my inability to sleep due to the pain, made me wonder why I would want to continue with a life that was all about pain. I know that there are medical pain experts, and non-medical courses of action (e.g. meditation, biofeedback, etc.) for living with pain, but when I was in the middle of it, it was hard to imagine that any of those paths would help.
     I couldn't, however, have imagined I would be happy to be on something as potent and addictive as morphine.  I asked my doctor if it's true that people don't get addicted to pain meds if they're really in pain.  She said that is true for some people, but not for all people.
     I also think those of us with brain injury need to be especially careful of messing around with drugs.  There is a wealth of information on that subject (Google "Substance Abuse and Brain Injury.)  An article I particularly like is http://www.brain-train.com/articles/substanc.htm.
     I'll write more on this topic.  Right now, I need to leave for a cruise to Hawaii.  That is the only state I haven't visited, and I'm excited!
     

Whining about My Pain is Getting Boring!

I am getting bored with complaining about the pain from my hips.   I like that I rarely get bored with anybody except myself.  And when I do get bored with myself, it usually prods me to positive action.

Here's what I've learned about my hip problems:

• The tears were probably there, at least partially, prior to my 2010 TBI.
• The difficulty I had with balance after the 2010 TBI probably exacerbated the tears.
• The aggressiveness with which I approached yoga & pilates probably made the tears worse.
• The aggressiveness with which I approached yoga & pilates probably made the tears worse.
• The aggressiveness with which I approached my physical therapy at home probably made the tears worse.
• Due to my age (66), even if I can find somebody to surgically repair the tears, there's a good chance the surgery will worsen the problem.  As we age, our tissue becomes less flexible, and I might just get tears around the repairs.

Here's how I've decided to approach my hip pain:

• STOP WHINING ABOUT IT, BOTH ALOUD AND TO MYSELF!
• Take the controlled release morphine my doctor gave me while I get the pain under control with moderate exercise, ultrasound and acupuncture.
• Enjoy the morphine while I'm on it; it's mighty relaxing!
• Learn to constantly do kegels and/or glute tightening, as these two actions will significantly reduce the pain. 
• With my doctor's assistance, go off the morphine & control the pain naturally.  (See above.)

I've never quite understood moderation.  It's always seemed to me like life is more fun and rewarding if I approach it full-bore.  Everything I need to do to live with the hip pain smacks of moderation.  I guess we're never too old to learn new tricks!

Pain, Pain, Pain!

I need to whine.  I feel like I am wearing family & friends out with my whining about brain injury (BI) related things.  Yet, as a true extrovert, I need to expound on what's going on with me or it just whirls around & around in my head and I can't see it clearly until I verbalize it.

I'm in a heck of a lot of pain, and I'm positive this problem began with my October, 2010 Traumatic BI.  This torn butt muscle (gluteus medius) thing (see my December 18, 2011 post on this blog or my December 29, 2011 post on www.braininjurylifecoach.com ) both torments & frightens me.  It torments me because it hurts all of the time, no matter what I do.  It frightens me because I know if this big butt muscle tears all the way through, I will no longer have the use of my right leg.  It also frightens me because I was told by a doctor that it could not be repaired due to my age (66); that it would simply tear again.

I refuse to believe that!  With all of the other high-tech medical procedures that are a possibility, I won't buy a diagnosis of "Status quo is as good as you're going to get!" with a torn butt muscle!  And yet---the thought lurks in my head "What if that doctor was right?"

I have an appointment tomorrow with a rheumatoid arthritis doctor to rule out rheumatoid arthritis or lupus as a cause of my torn gluteus medius and the hip labral tears (lining of the hips.)  After that, I will talk with my shoulder/knee orthopedic surgeon & get recommendations for somebody to "fix" my tortuous butt muscle.

I don't remember writing the following, but when I woke up the other morning, it was written on a note pad which I keep by my bedside, & it was my handwriting.  I wrote:
     "The pain is a living, palpable thing that feels like an entity of its own."