Sunday, October 30, 2011

Hurting Shoulder / Thankful Heart

I have not been blogging as much lately and I miss it. There have been so many things I've wanted to write about (including things I am learning from this experience). However, my chronic shoulder pain has taken a toll on me, mentally as well as physically. I don't have my normal enthusiasm for even the activities I enjoy because I'm hurting most of the time. Now and then I cry for no reason. And I'm not crying from the physical pain (even though the pain may be more severe in those moments). I cry because I'm so emotionally tired of feeling bad.

I'm having a lot of nerve pain in the left side of my body, in addition to my shoulder pain. It's mostly in different parts of my arm and hand. But sometimes I have sharp twinges in my neck, shoulder blade and hip (sciatic nerve). It's all on the same side, so I assume it's all related. The pain is not excruciating, just constant. And it wears on me. But I remind myself frequently that I would choose this pain over so many other afflictions I could be dealing with. I don't feel sorry for myself. I feel blessed to have endured so little physical pain and to enjoy such overall good health for someone my age. But I'm also not one to pretend I'm fine when I'm not.

I have such admiration for people who push through their pain and so effectively rise above it with a smile and an upbeat attitude, saying "Good!" when asked, "How are you?" But that's not me. And maybe that's another reason I have avoided writing on my blog recently. I don't want to whine incessantly about how bad I feel. (And yet that is exactly what I seem to be doing right now!) 

I'm thankful for the days when my pain is dull and the nights when, for some reason, I sleep through it and wake up more refreshed. But I don't seem to have those days or nights in succession. I've gotten my hopes up several times that maybe I'm starting to spontaneously heal simply because I had a good day or slept better. And then the next day or night is especially rough. I know I do things to aggravate the pain unintentionally. There are so many movements we make without thinking. They are just automatic reflexive responses. Especially when it comes to our arms. I prop my arm up on a pillow at night to take the pressure off my shoulder joint. And a couple of nights ago the pillow started to fall off the bed. Instinctively (not even fully awake), I tried to catch it with a quick arm movement and it felt like I was being stabbed with a knife for several minutes. The following day I felt the painful consequences of that involuntary movement all day long. (I also do intentional things like picking up my 18-month-old grandson because I can't resist him when he reaches for me.) On the other hand, I can't explain the days I have when the pain is so dull that I don't need heat or pain medication. But I sure am thankful for them.

I was fortunate to be able to spend last week at the beach with one of my dearest girlfriends, Cindy Robbins. We go way back and we have the kind of friendship that time and physical distance have no bearing on. Although we hadn't seen each other in several years, from the moment she arrived, it felt as if no time had passed. Our relationship is always the same; warm, natural and uncomplicated. Cindy is thougtful and considerate (almost to a fault). We have different temperaments and personalities, but we are really comfortable with each other. And while we look at so many things differently and often hold different opinions, we can talk freely about anything. If our friendship was based on seeing eye to eye or having the exact same interests, we would not be friends. But instead, our friendship is based on mutual respect and love. Our hearts are deeply bonded and we have shared values. Because of that, I think our differences may even enhance our friendship. I believe we gain insight and learn from each other because we do look at life differently. I also just enjoy being with her because she is special to me and I love her so much.

In spite of the continuing pain, this has been a rejuvenating week enjoying my friend, leisurely mornings in the condo, relaxing afternoons in our beach chairs, delicious food, meaningful conversation, reading, and spending time with Danny, Rebecca and the boys (who were just down the road in Seagrove). There is something so soothing about the beach. The warm sunshine, the sand and the waves did provide a bit of mental relief and helped to distract me from focusing entirely on my physical discomfort.

My pain is worse today, but I'm hoping it's just from being in the car all day yesterday. I see Dr. Elrod a week from Thursday. At first I was dreading surgery. And I still can't say I'm looking forward to it. But I'm ready. I'm so tired of hearing myself whine (even in my own head)!

We have a special weekend coming up. A family wedding followed by a Howerton Cousin Reunion! I have been looking forward to it so much and I want to be able to enjoy it. But I told John this morning that I doubt I will be bugging him to dance with me at this reception! : )

Friday, October 21, 2011

MRI Results

I had an MRI this morning and got the results this evening. Mike read the whole report to me over the phone and I can't remember all of the terminology. But the main problems causing pain, inflammation and impingement are a small spur and a glenoid labrum tear (which is a joint tear, not a tendon tear). I also have some tendinitis and arthritis in my shoulder. I will have to see an orthopedic surgeon to confirm the radiologist's conclusions and know for sure, but it sounds like I will need arthroscopic surgery to fix this.

I am so used to thinking of myself as a baby when it comes to pain that I was almost certain the MRI would indicate nothing more than tendinitis. I told John the good news is that perhaps I'm not such a big baby after all because something is really wrong with my shoulder (more than inflammation). Of course, the bad news is ... there's something really wrong with my shoulder.

Thursday, October 20, 2011

Just Checking In (Random Stuff) ...

I am happy to share that Marian is doing as well as John on CAL-101. It has been a year since she began treatment. Her blood, marrow and lymph nodes have all responded beautifully. On the left are her counts today. She says she feels good and she is back on the dance floor. She's pretty amazing for 79 ... or any age, for that matter. I think sometimes she feels younger than I do. : ) Especially lately ...

I am having an MRI of my left shoulder in the morning to make sure I don't have a tear in my rotator cuff. It is probably just tendinitis and/or frozen shoulder (which I previously had in my right shoulder about ten years ago). But the pain has been pretty constant for about three months. I've thought it was getting better once or twice (when the pain eased up for a day or I was able to painfully push past a certain range of movement). But then it seems to get worse again for no apparent reason. And lately I have been having a hard time sleeping; waking up with that deep aching that varies in intensity, but never completely goes away.

I've been taking an anti-inflammatory and doing self-PT exercises for weeks. I've had a cortisone injection. I've had acupuncture, a chiropractic adjustment and ultrasound. Once we get the MRI results, I will probably be sent for physical therapy. But when I had this before, it took almost a year to heal (even with PT and two injections). And I'm ten years older now.

There have been a lot of nights lately when I have woken up almost every hour, all night long. When I wake up, my shoulder is killing me and I am also really hot. My hot flashes, which were so mild and tolerable when they first began, have built up a little more steam. So I never really know if it's the hot flashes that are waking me up or the pain in my shoulder. All I know is they are both present any time I am conscious during the night. And they are both making me feel old!

I read recently that pain is a reminder we are still alive (as we get older). And I am thankful I'm still alive. But I find myself wondering frequently what it's going to feel like to be old (supposing I stick around that long). I also realize how fortunate I have been to enjoy good health into my fifties and to have endured so little physical pain over half a decade.

We went to see close friends (Michael and Norma Geiser) in New England last weekend. We flew into Providence, RI and stayed with them in Pawtucket from Thursday through Sunday. We spent Friday in Newport, RI, and Saturday in Boston, MA. We walked and stood a lot (sightseeing). And we were all hurting. Aching feet. Aching backs. Aching shoulder. (My knees are not bothering me at all right now because I'm taking an anti-inflammatory every morning for my shoulder.) Fortunately, we are all in the same boat. So we were sensitive to each other's aches and pains. And we had plenty of laughs about our aging bodies.

One thing I know: There is definitely something to the theory of endorphins relieving pain. More than once I noticed a complete absence of pain while we were enjoying a fabulous meal. Actually, I didn't think about pain or not being in pain until the pain returned. At that point, I realized I had not felt any pain all through dinner (or lunch at Quincy Market). But one cannot be on a continual feast -- even if there are therapeutic benefits from surges of endorphins!

Here are a few pictures of me feeling no pain ...

We had a great time with two of our best friends in the world, Michael and Norma (aka: Mikey & Nawmin).

Sunday, October 16, 2011

Yahoo Instant Messenger

I was away from my computer, exercising, tonight and when I came back I noticed I had an instant message from someone asking me a CLL/CAL-101-related question. I wanted to respond, but the message was sent over an hour before I saw it and the person was no longer online.

If I don't respond to an instant message, please email me at or leave a comment I can respond to on my blog (in the event I do not respond to an instant message). I hope to answer your question but have no contact information.

Tuesday, October 11, 2011

CAL-101 Update: John (Completion of 18th Cycle)

WBC: 5.81
NEU: 3.70
ALC: 1.56
RBC: 4.28
HGB: 14.4
HCT: 40.2
PLT: 221

For those who don't carry around the "normal" numbers in their heads, John's counts are great.

Going into his 19th 28-day cycle of CAL-101, he is continuing to get good results on the lowest dose given (50 mg. twice daily).

Nodes still under control. Blood counts normal. No symptoms other than off and on fatigue. No infections. No side effects. Happy, thankful wife.

John has been on CAL-101 since May 27, 2010.

Something to Remember

Sunday, October 9, 2011

The Scars of Abuse

Even when wounds heal, they often leave a scar.

This morning I was searching old files for something specific and stumbled onto an old file I thought had been deleted years ago. I read it and was amazed at the degree of emotion that was triggered simply by remembering specific past abuses. The emotion isn't anger or resentment. In fact, I'm not sure I could even define it for someone who has never suffered abuse. It's more like a post traumatic stress experience. For a few moments -- maybe even an hour or so -- your emotions travel back in time. And it's as if the event happened yesterday. My heart rate goes up. I have anxiety. It's like a tidal wave.

Many times I have shared just one story or example of past abuse with someone (usually to let them know I understand how they feel) and have not been able to get it all out without breaking down. Someone who has never suffered emotional and psychological abuse may not be able to understand or relate. It's as if you relive the experience every time you revisit it. But one of the rewards of having experienced abuse is the ability to connect with, relate to and hopefully help other victims of abuse. So never revisiting or reflecting on the past is not a realistic option. This is one of the reasons I do not believe that you haven't forgiven if you haven't forgotten. I see no value in forgetting. You're able to empathize with another hurting person because you do remember the pain. That's not the same thing as constantly dwelling on it and perpetually feeling like a victim, harboring resentment.

I have a portable hard drive where I've saved the content of numerous old hard drives every time I've gotten a new computer. I used to have all kinds of documentation saved from my past. I had always saved things in files, as my own personal (dated) validation/evidence of the abuse I lived in for so many years. It consisted of personal journal writing, emails I had written detailing specific incidents to a friend and making pitiful pleas to the abusing party to treat me differently, as well as writing I had done for counseling detailing specific examples of my abuse and the ways I was coping with it.

For instance, my counselor asked me in 1999 to put in writing all the ways I was abused and what it would take for me to return to my previous marriage after a six week separation. I had left that time because I had been struck in the face and I was seriously considering not going back. For many reasons, I was the most afraid I had ever been for my safety at that point. And I was very low emotionally. But I was feeling a lot of pressure to stay in the marriage and I agreed to at least consider another attempt at reconciliation. Counseling was a part of that.

In the first joint counseling session after the physical abuse and separation, I had been asked by my counselor to read out loud the 14 page "letter" I had typed out (single spaced) giving examples of abuse and what it would take for me to consider trying again. When I was asked to put it all in writing, I had no idea it would wind up being 14 pages long. But I was asked for details and specifics. And there had been so much fresh abuse. I didn't struggle to give examples.

I remember crying and trembling as I read it out loud to the abusing partner in the presence of the counselor. I expected denial and anger in response. And I was shocked when the abusing partner acknowledged to the counselor that it was all true, every word. I remember him saying it was typical "_______ behavior." He said he heard and saw himself that day and felt disgusted. He swore he would change and he would keep the fourteen typed pages forever as a reminder of how he never wanted to treat me again. I was sufficiently touched and impressed with that response to go back shortly thereafter. And, of course, there were many more disappointments and further abuses until I finally left and filed for divorce in 2002. (One day after I returned I found the 14 pages torn into tiny pieces, spilling out of a trash bag. It hit me like a ton of bricks. I knew it was left that way intentionally, as a statement.)

I am an extremely trusting and believing person. If you tell me you're truly sorry and will not hurt me again, I will believe you every time. People have always asked me, "Why did you stay?" Well, I believed this person every time he made promises to change for 27 years ... until I finally lost all hope and completely shut down emotionally.

I learned later in college courses and in counseling training that this is a cycle of domestic abuse and it has a name. It's referred to as the honeymoon phase. You're being promised everything you have always hoped for. And the reason it's considered a form of abuse is that you're being set up to hope for something that isn't going to happen. You're going to have your hopes raised really high, only to have the rug pulled out from under you again. And this can go on for many years; especially in a situation where someone is very forgiving, long suffering, committed to the marriage and endlessly hopeful that change can occur. My coping style (focus on the positives, rise above the negatives, lower expectations, make the best of everything) was a huge contributing factor to being caught in this cycle for so very long.

There were several apologies and acknowledgments of the truth in more recent years. But in between apologies, there was also denial. Most abusers struggle with an inability to face their inadequacies and a fear of vulnerability. They constantly guard against being vulnerable to others. So even though an apology can be very sincere in the moment, the vulnerability felt as a consequence of that humility results in the return of false pride and a denial of the truth they can't face about themselves (because it reminds them they are inadequate and flawed, which makes them feel weak). Anger is the emotion of choice because it is empowering.

I kept all of my "documentation" for years, even after I was remarried. For some reason, I could not delete anything for the longest time. I think I wanted to be able to remind myself (as if I might forget) how hard I tried and how bad it was.

I also thought I might one day write a novel (a true story concealed as nameless fiction). And if I ever did, all of those files might come in handy. But when John and I moved into a new house in 2007, I had to make a decision about the printed documents. Did I really want to keep them and move them into our new home? Or did I want to make a clean break with the past? I had a new life. It seemed healthier to throw it all in the trash and move on. Put it completely behind me. So I did. And I deleted many computer files at that same time. But every once in a while, while searching for something, I find a file I missed (like I did today). And I have to "decide" to hit delete again.

But before I do, there is usually an impulse to share it with someone and say, "This is how I lived. You have no idea what it was like." Why I still have that impulse I don't fully understand. Once the impulse passes, I realize that I do not have anything to prove to anyone. Especially now.

Even though I occasionally still entertain the thought, I know I will never write that novel. I have no desire to dig up the memories and relive the trauma. But I will always remember well enough to connect with other abuse victims and feel their pain. And that is something I would not want to change.

After writing all of this, I wondered if I should post it or just delete it. But sometimes the posts I think no one is going to benefit from wind up being the ones people tell me they appreciate most. I lived so many years believing I did not have choices. Now I know I did. The choices I finally made nine years ago were choices I could have made at any time. But I did not believe I had choices and I was immobilized by fear.

If it has ever taken you a long time to realize you had choices, don't waste time beating yourself up over that. Just be thankful you realized it at all. Some people never do.

One of my favorite lyrics from "Already Gone" (Eagles) ...

So often times it happens that we live our lives in chains,
and we never even know we have the key.

Saturday, October 8, 2011

The Rest of the Story...

By now, all of my friends have noticed how frequently I've been going to Panama City Beach. But I haven't openly shared why (other than my web writing for John is much more private than I am and he at first requested that we keep it to ourselves (for reasons I will explain further down). But the request has been lifted and he told me last night that he doesn't care who knows. Which is such a relief to me because I have a VERY hard time being mysterious and vague with friends! It just isn't me!

John has always wanted to own a condo at the beach and we've been looking at property in the Destin area for years. I was always a bit ho-hum about the idea. I didn't really understand why it appealed to him so much to own something. (The thought of owning a beach condo someday never once crossed my mind in my whole entire life!) I definitely did not have the bug. But I'd always ride around with him and look because he did. (Sometimes I would think to myself that maybe if we just went ahead and bought something, we would be able to stop looking. Ha!)

This last New Year's Eve, we were invited to spend a few days in PCB with our close friends Ricky and Karen Jones. They own and operate Resort Condo Services ( And I fell in love with Panama City Beach, FL. For many reasons, PCB appealed to me more than Destin. And I started to warm up to the idea of actually buying something. Of course, having good friends in the rental/property management business enhanced the appeal. I liked the idea of being able to have a more personal relationship with the people who would be overseeing the rental and caring for our potential investment. The thought of dealing with some huge impersonal management company was far less appealing. And I liked the personal touch service RCS was able to provide to their guests as well as their private owners.

Although it would be nice to have a condo that no one ever stayed in but ourselves and our family, that is a luxury we cannot afford at this time. We need to cover our expenses, which are substantial! But it is at first a bit hard to think of "strangers" staying in your precious "home away from home" and perhaps not caring for it the way you would. You have to get past that, of course, because it's a business investment. But there is still that apprehension. And our relationship with Ricky and Karen has been a big help. They have owned and managed condos in PCB for a while. They know the area and the business well. They have developed a lot of contacts and have hands on experience to share with us. And most importantly they genuinely care about our investment and how the condo is treated by guests.

Because of the economy, we recognized that this was the ideal time to act and that this window of opportunity would not last forever. So we took the leap and bought our first condo in March! It has stayed rented almost continuously (except for the weeks I have blocked out for personal use). And it's been such a positive experience that we bought a second condo on the same floor when a foreclosure became available over the summer. The first condo was completely furnished and we stayed in it immediately upon closing. But the second condo was a clean slate. Even the appliances had all been removed. It needed paint, carpet, drapes and furnishings ... lots of work. We wanted to have it rental ready as soon as possible, but we also wanted do as much of the work ourselves as we could. And we are a few hundred miles away.

So that's why John and I were in PCB for eight days a few weeks ago. We weren't just having fun. We were working very hard at redoing the new condo. I only got to spend three hours in my beach chair that trip ("Poor Little You!" as John says). I spent far more time in Home Depot, Lowe's, furniture stores and in the condo (waiting for deliveries and being John's helper with such tasks as mounting the microwave over the stove).

And that was also the main reason for my trip this past week. I wanted to be there when the drapes were hung. And I took my friend Robin with me to help me place wall hangings and other finishing touches. (Robin used to live on South Padre Island and had recently given me some tropical items she wasn't using anymore. I was excited about using them in the new condo and thought it would be entirely appropriate that she be with me to see her belongings placed in their new home.)

As it turned out, I don't know what I would have done without my dear friend this week! (I actually thought I could do it by myself if I had to. And that would not have been possible.) She was much more than a help. I couldn't have accomplished my tasks without her (especially with my shoulder impingement). Not to mention, her presence kept me from being completely overwhelmed more than once. We ran into a few snags (like not being able to drill into concrete walls even with masonry drill bits). Fortunately, with the help of Ricky and Karen, we were blessed with the services of a special angel who had the right equipment and showed up to save the day. (Karen, please tell your dad that I called him an angel!) By Thursday afternoon at 1:00, we had every wall hanging in place and were able to enjoy total relaxation in our beach chairs for the rest of the day.

I am so pleased with the finished product and so happy that I can talk about what I've been doing. I told John last night that I'm just sure all my friends think I have turned into a beach bum this year, and that I wish I could just be out in the open about our new ventures. And that was when he said, "Oh, I don't care. You can tell anybody you want, as long as you make it clear we are committed to a rental program and it's not available to loan out." (He thinks it's hilarious that I always feel the need to explain myself, including why I've been to the beach so much lately.)

One of our mutual concerns was that we would possibly hurt feelings of friends and/or family by not offering it freely. And that was a part of our initial "confidentiality" pact. I love to share my blessings. Not that John doesn't. He is one of the most generous people I've ever known. But he is able to be unemotional about business decisions. I have such a hard time separating my personal feelings from the business aspect of this (or any) endeavor. And John knows this.

However, if you are interested, please feel free to contact Resort Condo Services! They handle all of our bookings at Emerald Beach Resort. Both condos are one bedroom + hall bunks w/two full baths, facing the Gulf and just six doors apart on the same floor (in case you are traveling with another couple or small family and want to be separate but close). Pictures of the first unit are already available on the website and the second one should be uploaded soon. In the meantime, here are some pictures I took with my own camera. I am so proud of our hard work!
By the way, John's new favorite impersonation of me is:
"Why do you want to buy a condo at the beach?"

For me, that cross and sign above (in the master bath) is what marks the condo as "ours." John and I waited a long time to find each other and be this happy. We met in our forties after our own individual long and broken roads. I didn't know I would ever have a happily ever after. But I have felt like Cinderella almost from the day I met him.

Saturday, October 1, 2011

Even at the risk of injury, I'll choose tender over tough!

I saw this on Facebook this morning.

My first reaction to it was, "Yeah."

Then I read it again and thought, "No."

I agree that I cannot keep carving out space in my day to day life for people who make no effort to be in it. But kick them out of my heart? No way.

I may try to put someone out of my thoughts at times, which is easier said than done;
stop reserving so much space in my HEAD for trying to figure out why someone doesn't make any effort.
But my heart is another matter. I don't kick people out of their space in my heart.

Soft hearts have broken places in them that sometimes hurt.
Trying to develop a heart with no empty, achy spots is not a good solution.
In fact, it sounds to me like the beginnings of a hard heart.
Something I never want.

But I do intend to fill my LIFE with people who at least show some interest in being part of it!