Powerless- in search of MY power. 

Recently my friend and author Jon Katz wrote a blog post on truth and power. 

In his post he quotes author Bill Ferguson (“How To Take Your Power Back”) who describes what it means to lose your power in this way: “When you fight the truth of the way your situation is, you give it power. You make yourself a victim and put yourself at the effect. To get your power back, stop the resisting. Surrender to the truth of the way your situation is.”

This quote really resonated with me. This issue of giving up power in ones life isn’t foreign to me. But where this idea sits with me now in my current situation which has been incredibly hard for me.  I have been in terrible pain all summer. See links to those posts below.  I’ve been bed bound much of the time. It’s been a mind blowing and mind changing time. I’ve seen the worst of myself and maybe sometimes the best of myself. I’ve become dependent on others in ways I didn’t think would be necessary until I was much older. Having to have your husband wash your hair when there’s no chance of hanky panky isn’t where I want to be in my life. I’m unable to care for my kids like I want. Thankfully they are teens and have some ability to be self sufficient (sometimes that’s not as good as it sounds). I can’t care for my animals and let’s face it – these are my animals. Nobody else in this house would have all these beings to care for if it wasn’t for me and I am responsible for them and I can’t even carry a bucket of feed. 

But I don’t want to become a victim -yet I think I have.  I don’t want this situation to have power over me. Yet it does. I mean I can’t get out of bed because of the pain.  Maybe in my case I could be seen as a victim of this particular circumstance  – I didn’t ask for cancer (who does) and I certainly tried to deal with and find answers to my pain issues after cancer treatments to keep me from getting this bad.  Yet here I am. And I’m angry and scared. But this is not who I want to be. My husband and I have spent long hours this summer trying to find the help to fix me. I’m trying not to feel victimized. Yet I’ve run into many roadblocks and I’ve began to lose hope and that sunk me deeper into despair and then I have become more of a victim and I realize what’s really happened is that the hopelessness I’ve felt is really me feeling powerless in my situation. 

How does one get that back their power? 

According to the quote above I need to stop fighting the truth of my situation. But does that mean I’m giving in to it? Accepting that this is my life? It seems too unacceptable  for me to do that.  It seems more like giving up. But maybe that’s the point. Maybe by accepting the truth of my situation doesn’t mean I accept its going to go on forever but if I accept the truth of where I am now I can actually take back some of the power I’ve lost and begin to regain some hope. 

To keep fighting the truth of my life at the moment isn’t doing anything positive for me. Sure I’ll wallow in times of great pain and I’ll cry rivers of tears but perhaps to accept where I am now will enable me to see that this doesn’t have to be where I’ll always be. And somehow maybe that will make me feel less afraid and less like I’m in a cage. Will I then feel like I have power again?  Because I have lost my power and I never realized this as the truth until I read Jons post. 

We can so easily let our power slip away – we don’t even see it. 

I don’t know if I can accept where I am as my truth now. Even though I know it’s my truth. It’s the fear that this will be my truth on and on and I don’t know how I’m getting out of it. I’m tired of the loneliness of sitting in my room in my bed watching TV, being comforted by my dogs, reading books,taking pills, and oddly worrying about getting fat, or thinking things too sad to share here.  I’m just not willing to give into this fully as my truth yet darn it. But it is my truth right now. I do feel the times when I am able to face it and not let the what ifs take over and I give in to the reality a little a I feel that planner Anne step up and say OK what do we do now to get me the hell out of this place? I feel that power in that moment.  I know she’s there. Under this frustrated and weakend human being that old Anne is still there. And she has been robbed of her power off and on much of her life but has always managed to get it back.And in some ways she may never get it all back. But in this current situation that’s is not acceptable. She needs to get better. 

  I think power comes in many facets of our life and perhaps when we find power in all the facets we reach some true synergy .  I’ll be lucky to find that in this lifetime. There are still too many things that have power over me -but I’ll take finding my power again in finding my way out of where I am now. 

In my moments of weakness I have wondered if I’ve done something so horrible in my life that I’m now paying some type of penance at this moment in this situation. My dear husband said if my rationale were true we all would be paying for our sins in  some terrible way.  Criminals wouldn’t need to go to jail if it was tit for tat- ok he’s right on that point. 

 Am I supposed to learn something from this situation thats deeper than what I want to conceive? I don’t think things happen just because. I think things happen for reason and I think every single thing that happens to us in our lives gives us a chance to learn but maybe that’s my type A talking. I’ve had a lot of things happen over a short span of time and I’m still trying to figure out what I’m supposed to learn from these things. But laying here pretty much helpless has giving me perspective on some things maybe that’s the point. I now have a better understanding of how people with chronic pain live. It’s not just take a pill and get the hell up and do something -that’s so not how it works -maybe in the past that’s how I thought it worked. Now I get it. I know how I’d like to live my life when I’m finally freed from this bondage. And maybe I’ve learned to be a tad more patient.  But maybe this is one of those things that you understand better in hindsight much later in your life. 

Or maybe I’m having one hell of a pity party and I’m not willing to see it. 
 I really don’t want to feel like a victim of my own story in this situation -I don’t want to feel hopeless.  It’s just that so many doors have opened and closed on me on this journtey. I have this fear that if another door closes I won’t have the strength to find another door to knock on.   The closing doors are like kryptonite to my power.

But I have a voice and my husband has a voice and we can and should feel powerful to use it to tell my story a thousand times until someone listens.  I’ve been giving others – in this case doctors and other health professionals all the power- and I’ve felt powerless which led me to lose hope. But I have a husband to lean on that is a blessing because others in my situation might not have that. And he’s been the driving force behind getting me to places and getting me heard. He’s been the shoulder I’ve leaned on when I just couldn’t take anymore.  He’s as frustrated as I am and Saddened that ive gotten this bad. Thankfully this week I did meet a couple of doctors that seemed as shocked about this as we are. I’m too afraid to put too much hope in them. It’s just too hard. 

It’s been hard for me to write about it -physically BC using my arm for too long brings on pain. (i’m learning to depend on the “voice to type” function on my iPad and I’m getting better and better at it) and  to get myself to write about it has been mentally hard. But when I do write the truth about it I feel freer. That’s the power I have -to express my pain and my anger and at times my sorrow. This is my voice right here where I am now and to me writing is power and as long as I’m writing I’m not giving up and that’s hopeful.  Right? 

The only way I’m going to get hope  back is to accept where I am now and that it sucks big big big time but this situation isn’t going to own me and squash me. The way I’ve been feeling -victimized- isn’t doing me any good at all. Something has needed to change. Do I want this to have power over me? Do I have the power and the strength to face it head on?  Maybe I have been facing it but in bits and pieces. Sometimes being in pain just makes you want to shut out the world and sleep and not deal with this at all. But maybe when I face the truth  in those  bits and pieces I gain some power and I get back some hope. And  Maybe that’s the best I can do now – moments of power moments and of hope. But it’s something.

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If you need to catch up you can read  my pain story from the beginning of the summer :

https://notreadyforaarp.com/2016/07/24/figuring-it-out/

https://notreadyforaarp.com/2016/08/21/sidelined-the-summer-goes-on/

Surrounded by Dogs


It’s not often that I don’t have a dog or two -or 5- near me. One could say they must follow me because I have food -and I sometimes do but I often don’t and I don’t share all the time. I also am not the person who feeds them most of the time.  My husband and my kids do that job. But our dogs (my dogs) are my comrades. Lemon our yellow Lab prefers the company of my son -Luke- and I am her second choice when he’s not home -I love their love for eachother.  The other pups -my boys-are my shadows much of the time. One might move to a cooler place on the floor in the hallway outside my office or bedroom- but they are always near me. Is it because I’m their leader? Am I their leader? I don’t know what they think. I’ve always had a comfort being around animals especially dogs.  But my husband always is amazed that they follow me around like the I am the Pied Piper. 

It’s something that I don’t take for granted -this affection – but it is something that I’ve come to be used to in my daily life that I don’t always notice it. They are just there. And I need them to be there.  Dogs have been a calming force much of my life. When I felt alone or scared at times in my life there was a dog there to comfort me. They were my PTSD dogs long before there were such a thing. 

We usually are all quiet as we sit in our spaces either in my office or in my bedroom –  Unless the UPS man comes. Then it gets a little wild. 

In the last couple of months I’ve been out of sorts. My spirit is down and my physical body is in pain. I’ve waxed cranky and sad and sometimes downright angry. There have been days where I felt like there was just too much dog near me. I felt crowded impatient and claustrophobic. I’d shoo them out of my space.  It really wasn’t them at all – but yet in my angst I’d push them away.  

 I’d shoo them away -but they never went very far from me. They might lay in the hall or go sit by my husband or ask to be let out. 

 My old English sheepy -Ridley just doesn’t understand cranky or mad. Or the word shoo or off. He doesn’t leave when asked and in fact comes closer to offer his head for pats. Rudy is like glue to me. He doesn’t shoo he just curls himself a little further away to give me space. 


When I’d get back to my work or stop wallowing in my crankiness I’d notice later the dogs had moved back in closer. And I realized that I didn’t feel claustrophobic any longer. I’d feel a sense of calmness and I felt cared for.  Loved. 

This pattern has continued and as I looked around me today I realized that they may know what I need better than I do myself sometimes. 

It’s what comrades do for eachother…..

UPS?

Figuring it out. 

August brings about the end of summer break for my kids and the anniversary of my diagnosis of breast cancer.  This year will be three years from my diagnosis and sadly I am not in great shape – and it is not where I thought I would be three years out from cancer. 

I had an early mammo in June because I have been dealing with exacerbating nerve pain. So the first thing they rule out was more breast cancer. And the mammo and sonogram – done for safety purposes- were clear. Normally I would post such an event on Facebook and we would all celebrate. But this year I just cannot do it. Its not because I am not thankful for the news I am…but I have too much bitterness right now.

How can one be grateful and bitter all at once? Its rather easy for me. I can separate one from the other. Cancer in breast is gone – yay! But pain that stems from all the breast cancer therapies is as worse as its ever been.

The reason for my bitterness and profound sadness is twofold- the first being that i am not loving being almost bedridden with nerve pain. Too much movement throws me into pain and discomfort so I have basically tabled any fun thus far this summer in order to be able to get through the day with the least amount of pain as I can. So I am pretty bitter, sad and depressed.

The other reason I am bitter is because I began speaking with my doctors about these nerve issues over two years ago. And nobody really listened. Early on they twice tossed me over to the Lymphedema (LE) specialist and I even got a fancy pump for a really mild case of LE and finally the LE specialist told me she couldn’t help me anymore (not her fault- I was not being prescribed the right treatment).

I lived with the pain for a good while after that and from time to time I would try a new doctor or mention it again to another – but by the end of May the pain became more than I could deal with anymore. I needed help. The idea of having to find someone to listen to me and really hear what I was saying was daunting. I had never gotten any help in the past for the pain and I didn’t have confidence in my own cancer doctors to think they would listen.Thats enough to squash a spirit – even one like mine that can put up with quite a bit before it gets squashed. But frankly I have been through ALOT of crap over the last three years and my spirit is beat. The idea of spending my summer and perhaps my life feeling like this was just too much.

The thing was as my symptoms exacerbated they began to look like I had a condition that is not uncommon to woman who have been treated for breast cancer but sadly it is often misdiagnosed and often overlooked.   I had what looked like Post Mastectomy Pain Syndrome (PMPS) it’s also called Post Breast Therapy Pain Syndrome. Basically it is nerve damage of one kind or another that results from breast cancer treatments. It’s can vary in its symptoms and pain levels. I had a couple outlier symptoms too and those were the ones I lived with for the last two years and I can see how these might have thrown docs for a loop but honestly tingling and burning pain is nerve related and after a while someone should know what to do or where to send me. And I now wonder had we addressed these things sooner would i not be sitting here with the escalating pain I have?

I saw many doctors who were very puzzled by my issues.  I felt like I was getting passed around like a hot potato. But as the symptoms began to match those of PMPS I became more adamant and maybe pushy and weepy a few times (I don’t like when I cry in front of my docs BC they see cray cray lady) with my doctors insisting I was not doing well and I needed to be helped ASAP. 

The last thing I wanted to do was to bring up what I think I might have wrong with me with my doctors. But the way I see it is that I am being my own advocate. There isnt any doc going home and doing hours of research on my behalf. So the key is to find someone who will listen to you and the research you have done and want to work with you. Its a needle in the haystack in my experience. 

 We survivors are supposed to suck it up- learn to live with our “new normal” -but my new normal is way worse than my old one BBC (before Breast Cancer). I am willing to suck much of the discomfort up for the result of being cancer free – but I want quality of life too and I think I should be able to have that- or maybe I need to come to the realization that I might not get. But I am not there yet. 

There is that voice that kept telling me to just get on the internet and do what I do best- research.  If anyone out there needs to employ a researcher I am your girl. I have spent hundreds of hours while sitting in bed figuring out who needs to see me. This pain syndrome I have has literature dating back over 14 years. But the problem of PMPS is just starting to become more looked into. But it’s slow going. It’s hard to find the right people. 

My research paid off.  I found that a physiatrist I saw last summer is actually doing research on PMPS treatments. Physiatrists specialize in rehabilitation. I was lucky since I had been to see him last year I got a quick appointment. Last year I didn’t give much of a chance to help me as I wasn’t having as intense pain back then and I was managing it somewhat and was not wanting to do what he was thinking of prescribing for my frozen shoulder on my cancer side.  Bad patient. Since then my shoulder has thawed (which may be why my nerve symptoms  are worse ) and now my other shoulder has frozen. (Lucky me). I also have a broken toe but that’s not even a factor at this point -I just taped them together.  It’s been a cluster around here. really. 

I have now seen this physiatrist again and I am going to see this thing through  with him. He listened to me and asked me many questions. He seems to care. He has done some diagnostic testing and I’m set to get injections in the next couple weeks. We are developing a plan that will include injections and oral meds (which I hate taking so I’m waiting to see how well the injections help) and maybe physical therapy. It will depend on the testing results I suspect. So there is hope but this pain syndrome is complicated as most chronic pain is. 

I’ve looked into alternative treatments too. My TENs machine has been a huge help and I’ve gone to massage and done a treatment on a biomat. I think doing these things has helped me feel less helpless. 

Now that I’ve got someone trying to help me feel better I need to get my mind in a better place. It’s taking some work. And it may be that I need to talk to someone.  I’m feeling a lot of anger and perhaps it’s not only because of the run around I’ve dealt with over this issue but also just the cancer itself. I don’t blame myself for being angry but I also know that talking that out with someone may help move me ahead. 

I also want to be able to cling to hope. For a while I felt hopeless. That’s a scary place to be. I think being heard by a doctor has given me validation. But I know that I may be dealing with chronic pain for good. That’s hard for me to bite off now. I’m hoping that I can get back to things I love like riding my horse and working out. I’ve been walking daily so I don’t go insane. 

I just want to live my life the best I can. I want to enjoy new things and travel. But I don’t want too ahead of myself -just going out to dinner with the family is a good goal now.  

I’m am trying to get the spark back to write because that is something I can still do. Everything just feels off for me now and I’m hoping as I move forward to get myself fixed I’ll start to figure this all out. 

And when I get more details to this story I’m going to let my cancer Doctor know the path I took to get help and perhaps it will help them know what to do the next time a woman comes in and complains of chronic pain. If I could save someone else the frustration of running in circles for years trying to get help when she’s feeling badly then maybe this will have been worth it. 
 

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Info on PMPS:

This one mentions chest wall pain and tingling which baffled my dos BC I said it made me cough. 

https://www.sharecare.com/health/breast-cancer/what-is-post-mastectomy-pain-syndrome

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http://www.plasticsurgerypractice.com/2012/02/understanding-and-treating-postmastectomy-chronic-nerve-pain/