Meet Daisy (and duke)

Meet Daisy. She is my new beach cruiser.  When we bought our beach cottage this past spring I knew I wanted a bike. But I never really felt like I would be able to ride again because of the issues with the nerve damage on the right side of my body.  I kept telling Kevin we needed to wait to look at bikes until I felt better. The thing is I don’t know if this is as better as I am going until we do the next procedure which may be fat grafting. 

My arm and side tends to get all “burny” and achy feeling when I overdo. Ice packs are my friends. As are heading pads it depends on the moment. And I don’t know what overdo is. It varies -so I hold back on the things -like getting a bike. 

The other day kevin saw an older neighbor in our new beach neighborhoood  (we are like the babies in this neighborhood I am discovering !) and she was riding a three wheel bike. Kevin thought maybe I could try one of those to see if I could ride easily using just one arm. I thought -three wheels!? That’s a tricycle – but ok why not. I need to be open minded because I have a disability now and I want to adapt as best I can to be able to live life the best I can. So we planned to just go look at trikes. 

And if you are looking at the picture Daisy isn’t a trike. She’s a bike! Pretty as can be. 

We stopped at a bike store on route 1 as they were getting ready to close. We had to have our beach time and didn’t plan the timing too well but we lucked out and found an accommodating  store even though it was just about closing time. 

Two beautiful young woman were getting ready to take all the bikes set up in from t of the store inside. I could tell immediately they were Russian. The shore gets many young people that come over to work the summer shifts. I wanted to start my whole convo about how my kids are from Kazakhstan blah blah but I didn’t bc they were closing.  I don’t have those convos anymore now that my kids are older bc they are often with me and I think it’s their story to tell now. And they stay mute. But once in a while if they aren’t around I like to tell it but I had a bike to try so I stayed quiet. 

The manager of the shop a thirty something guy with a beard told us he didn’t have trikes at this location -bummer. I could tell he didn’t like the trikes. Why did I know this? Because he basically said so. I guess I wasnt too keen on them either  especially after he said how much space they took up in his small shop. I didn’t want big and heavy – having a bad arm doesn’t bode well for having to maneuver a big bike. 

I explained my plight – show me a cruiser with big long handle bars so I don’t have to reach far. And he did! There was an entire fleet of bikes I could choose from and I saw the yellow green cruiser with the white seat and I asked them to pull that one out. 

I had a long light sweater on over my bathing suit which I didn’t take off when I got on the bike -I was too excited -so I just held it up with my hands as I rode.  It must have made a pretty picture! 

The seat was so comfortable and it was so easy to peddle. I rode around the lot laughing and almost crying because the feeling of freedom was so immense. I can’t explain well but after being so sidlelined for so long the feeling of moving on the bike was amazing. It isn’t a horse but it’s something. 

Kevin turned to the manager and said “I will need a bike for me. She will be taking that one.”

I laughed and rode around and around. 

And Kevin bought Duke. Kevin is not sure about naming his bike but he’ll go with it. He is just that way. 

I love Daisy. And now she has Duke to spend her time with. He’s a good looking bike. A cruiser but manly in his build. 

We rode all over the neighborhood the first night. I was sore the next day and my arm hurt but I likely used it more than I should.  I can easily ride here with one arm.  My left arm is not my dominate so asking it to do more is awkward for me. The right arm wants to jump in and help. I’m learning my bounds. 

I sent my surgeon the photo of me with Daisy. I owe him so much thanks for getting me this far. I still have a ways to go but this is miles from where I was.  I did ask him if bikes are ok and I promised that I was not riding my horse. He responded with happiness at my ability to ride a bike and said bikes are ok. Horses not ok. 

Yet. 

But they will be. It’s a goal. 

But for now there is the freedom of riding Daisy. 

And for the ability to do that I’m very grateful. 


Duke

Doing the Mundane

You never appreciate doing boring laborious chores more than when you have been unable to do them for so long. For me my weekend was filled with fun everyday boring stuff and I’m so glad I was able to participate. I still had some pain but often forgot about it as I kept busy. I’m sore as heck even two days later. My muscles are still getting stronger after being laid up for so long. But I’m feeling good and I’m happy.

So let me bore you with my mundane weekend. For me it was not a bore. It was bliss. 

There was Friday night dinner out -with my mom and my hubby as my dates. 


On Saturday there was a little butterfly watching as we began to spread sand over the dirt and stone of our chicken enclosure. 


We worked. The boys shoveled over four yards of sand and since I still can’t shovel  (maybe I’ll be able to rake again someday!) I moved sand along with my feet and that proved to be a great workout. 

We had time for a little communing with the animals. 


And fixing a Rooster with bumblefoot. 

And I have to share Kevin with his new gas powered power washer. He loves it. 

And we did  a large amount of gardening. We created a lovely area. 



My work posse didn’t want their photo taken but I bribed them with ice cream. It pays to have an awesome ice cream shop minutes from our house! I am So very thankful that my two sons worked so hard all weekend with me and even did shifts at their “real” jobs.  

(Look how tall they have gotten!) 

And of course we communed some more. 


We sanded and gardened our way through the weekend. I spent it with two usually surly sixteen year olds but somehow they were gracious and hard working. Maybe they also got the brevity of the moment. I was doing normal things again. Maybe they didn’t get it. But I sure did -and as I worked I kept marveling at what a blessing it was to put my hands in dirt again and work with the animals.  This is a part of me I’ve missed -being able to do work -I couldn’t shovel at all or lift much-but I did use the hand trowel and planted some plants.  Yes I did a lot of pointing and telling people where I wanted stuff but I spread sand with my feet and tended to a hurt chicken. I groomed my horses and I sat and enjoyed being with them. There is much I can’t do still -but there is much I can do and thats the gift. And for that I’m so grateful. 

Goals. What you picture. What is real. And lollipops.

Almost 6 weeks since surgery. I had forgotten from my first surgery what recovery was like. It’s a roller coaster. I’m doing more at six weeks post surgery than I did last time. The surgery is a tough one.  But I think I pictured a more pain free existence. I know I’m not going to have no pain there’s sooo much damage from radiation. But It’s better -don’t get me wrong – and maybe it’s because I’ve had a couple of rough days this last few days that maybe I’m feeling a little down.

 I was down at our new beach house a couple days ago and I was walking my dog Rudy. I must have been walking him with my right arm -the recently operated side- it was an unconscious thing- he must have pulled my arm which for me is like a big no no. Thankfully it wasn’t a hard enough pull that I really remember exactly when it happened. I remember mostly walking him with my left hand but we did come upon another dog and maybe it was then that I grabbed the leash with both hands and got pulled. I didn’t have the leash put in in its anti-pull setup. I bought it just for that but I was only taking him for a quick pee that turned into a walk to the bay and on the way back is when we met with John our neightbor and his dog Abby. So my bad. And later after a nice nap on the couch in Cool Breeze Cottage family room I woke up with lots of pain.  The burning pain and  radiating pain that makes me cough. The thing that I’ve wanted to be rid of but doesn’t seem to want to leave. It’s deflating. But likely due to radiation damage. 

I saw my surgeon last Thursday and he’s pleased with my recovery. I think he’s surprised that I don’t take more pain medication but I do take enough just so I can get out an about. I have been hoping that the need to use it will abate as I heal more. I’m to begin working on more range of motion exercises which I fear will bring me the pain I’ve had since the pulling incident a couple days ago.  But I can’t be afraid because there is the thought that more range of motion might alleviate some of the pain-eventually. Much of my pain since the first surgery that removed surgical clips is related to scarring and to nerve damage from radiation treatments. The damage tightens skin and tissue and causes entrapment of the nerves….and the nerves get damaged from radiation as well.  

Why I have such a severe case is unknown. But the long term painful effects of cancer treatments are really just being studied.  In many ways I’m a guinea pig every time I go under the knife and entrust myself to the skills of my nerve surgeon. My surgeon continues to suggest things we can try in the future. Fat grafting is one. It shows much promise. But it’s hard for me to picture my life like this. As a person with chronic pain.  Overall I’m much better than I was but I am afraid to get too optimistic. I am also bummed that we can’t solve the issue that makes me cough but I think we are getting closer to the cause- but fixing it may not be possible. Managing it may be my only option. 

Last Thursday I was feeling good. Then The dog pulled me and I feel like I went backwards. This has happened before- a few weeks ago when I overdid range of motion exercises. I recovered and continued healing. I got down then, and I felt the same fear then that I have now. That fear that I’ve done some damage to myself and it won’t get better. I don’t want to feel so negatively but it’s so hard not to be sometimes. The last four years have not been easy and the last year has taken me from someone who could walk out the door and not think a thing but whether I had my sunglasses to someone who has to worry about whether I have my pillow -which I need because I can’t sit without pain if I don’t have it-, whether I have pain meds with me, or if I have an ice pack or heating pad. It’s not what I pictured my life would be. 

I picture my life much differently. I see myself more free and more pain free. Then there is the reality of the now. I still feel sidelined much of the time.  I have to meld what I picture for myself to the realities. I know that we can have plans for ourselves and life will often take us on a different path. I will keep the pictures I have in my head as eventual realities. They are goals. They keep me going. Maybe they will be but not exactly as I picture. Coming to grips with the realities of what life is is very hard for me. On days like this I feel sorry for myself. I cry. On days like this I know I need to get my butt up and do something. Even if it takes medication to get me moving I need to do it. 

The other day at the nerve surgeons office I saw a young girl. She was from Israel. She was beautiful, maybe 25. She was with her translator. I was standing at the snack counter grabbing a lollipop – my surgeon always has lollipops-the good kind-Tootsie Pops. I offered her the container she shook her head no and smiled. She stood up to leave. She did well standing on her two prosthetics, happy, bc whatever procedure she had that day made her pain free. It wouldn’t last it was just a diagnostic procedure, but her smile was beautiful. I knew from chatter in the back office that she had been the victim of an IED explosion as she was traveling  in a bus- lost the lower part of both her legs. Seeing her was real life smacking you in the face. I wanted to hug her but offering her the lollipop was all I could do. You could see she was a girl who didn’t want pity -she just wanted to be rid of her pain. 

 Perspective. 

I thought of her today as I was writing this post. We all have to wake up with our realities. I think I’ll get myself up and go live my life and deal with mine.

It’s all in your perspective.  Sometimes my day sucks but I have a choice what I’m going to do with my day.

I’m going to try to go to the garden center and buy a perennial for my cleaned out garden bed….

I’m pretty sure that I’ll think of that girl often.

Surgery journal …it keeps on going 

So the last I left off – I think- is that I was slowly healing from my surgery. 

Recap – I had breast cancer surgery which led to pain for three years that was ignored by my breast surgeon. It exacerbated last May 2016. I was bed ridden. I had to begin a journey that would lead mye to a nerve surgeon that agreed that I may have a problem with surgical clips. This clip issue had been suggested to me by a physiatrist I saw over the summer.  Surgical clips are made of metals and are used often in surgeries to close of vessels. They have caused issues In patients but it’s not common or maybe not admitted by doctors that they are an -in fact- an issue. 

The nerve surgeon operated. Removed clips in my axilla (armpit) And he found some clipped onto nerves. Not the right thing to clip.  The nerve surgeon also cut some nerves and buried them into muscle. He removed a neuroma (bundles of scar tissue ). He was optimistic that he had cleared the area of clips and that these were likely the cause of much of my pain. He Closed me up and here I am just over three months later. 

Now I will say that I’m still in the process of healing. But I have had pain in the back of my armpit -it’s not new pain- I think my surgeon thought it was pain that would subside as he treated all that other stuff I mentioned to you above. That pain in the back of my armpit is becoming worse. And the symptom that bothered me the most -the nerve pain that made me cough -is still around and seems to flare when that armpit pain flares. Nobody gets the cough symptom. That is very frustrating.

Is it worse BC I’m more active and doing more things?  Well I’m not bed ridden anymore and I am doing more and the more I use my arm the more it hurts. I can’t work on my range of motion exercises much because it causes pain. And it hurts as a passenger in the car and when I drive. I tried a long ride to the beach a little over a week ago as a passenger and that about crushed me. I am not big on opiates so I’m only willing to take so much medication. It was a stressful trip to say the least. 

I went to see the nerve surgeon this week and he took a long time with me. He pondered my continued pain. He had some ideas of the nerves it could be. He hopes it can calm down and become a non-issue the longer I heal. 

So the plan is to get a series injections right in the areas of my pain. The injections contain lidocaine -a numbing agent -which is short acting and some steroid which we hope will calm the pain down. I get the next injections four weeks apart. I won’t know if this injection will help even for the short term for up to a week.  Then if  I still continue with pain a few months from now I will have to have more surgery. 

Yes I know. It bites. 

But I need to get this pain level under control so it doesn’t limit me so much. I’m limited socially and physically. I’m up and around which I’m so grateful for. But it’s not enough yet. My mom moved in with us at the end of November. I want to be there for her.  I don’t want to be dealing with my own pain issues that it limits me from helping her. 

I’m 75% better than last summer. Being bed ridden and now being up and around is a huge deal. A lot of the pain is gone. But what’s left is bad. If it weren’t for the pills for nerve pain I’d been in bad shape. I hardly ever tolerate any RX meds. I failed all the cancer hormone blocking drugs I’ve tried. I was very pessimistic about the drug neurontin also known as Gabapentin. It’s used to treat seizures but is very effective on nerve pain. Which is a hideous burning pain that can go from light burn to a blaze if left to smolder.  The drug has been great for me. I have little side effects. A few twitches here and there and memory loss. The memory loss is the worst of it for me. I put up with it because the pain control is that good. And the drug isn’t like an opiate. I’m just writing everything down and when I forget something at least I have something to blame it on. I have read coming off the drug is  tough. Not like coming off opiates but it can be hard. But I’ve read how to counteract any unpleasant side effects with natural products like magnesium – which can make the taper off the drug much better. But I’m not even there yet. I still need the drug -so in an unlike fashion for me I’m not going to worry about when I go off it. 

Nobody said that this healing would be easy. I think I just got in my head that it would be a done deal when all those clips came out.  I’m disappointed. But I’m so determined to get to a point where I won’t have so much pain. I don’t know if I’ll actually ever be pain free on my cancer side -but I’d like it to be much better.  And I’m not pain free elsewhere. It’s just that the level of pain that sets us back from true living can be different for each of us. And I met my match. 

The one good – well maybe great thing- that has happened is that from my experience I have been able to help other woman in the same pain situation as I am in ( post breast therapy pain syndrome). A couple woman have even gone to my surgeon after I mentioned him on the Facebook page that I belong to for ladies with post breast cancer therapy pain. 

It feels good that my hardships haven’t gone in vain and that my experience and what I’ve learned and shared could actually be help to others.  

I have a lot of things I want to do. I am so grateful for how far I’ve come. And I call upon God each day to help me to be more patient. I am doing the best I can.

I miss riding my horse. I miss farm chores. I don’t miss doing laundry though -I can do a bit of it but I try not to. This week we hired a cleaning service to come in and clean. It was much needed. We will probably hire them on a regular schedule. I just can’t keep up and my teens aren’t the best cleaners. And I’m kind of done with the eye rolling from them especially when I can’t pull my own weight doing chores. And frankly I don’t want it to be a fight. In the scheme of life it’s just not worth being mad at messy kids. Life’s too short. 

The road to recovery isn’t always a straight line. I’m learning to be more accepting of that. Right now I am better than last summer. I’m so grateful. 

I really am learning to live one day at a time. I don’t know how I’ll feel from day to day. So just focusing on today is the easiest for me. It’s forcing me to live more in the present. The theme to my last blog. 

I’m carried by the thank you’s I’ve gotten for sharing my experiences and hearing that what I’ve written has been empowering them has really be a saving grace. I’ve been carried by the good wishes of friends from all over. 

It’s not a road I’d wish on anyone. During my worst days I sometimes can’t find a thing to be joyful about. But I see that life happens no matter where I am or what I feel – and I want to live life. 

I orten  think of the Apostle Paul in the Bible and his unending optimism and want to call people to Christianity despite his circumstances. His letters never waivered in his goal and he never lamented on his circumstances though he was jailed when he wrote many of the letters that now are books in the New Testament. He found contentment in any circumstance. This was because of his love of other things outside of this earthly place and his faith of what lay ahead for him. 

Sometimes you have to try to enjoy life even when you aren’t where you want to be- whether that be physically or emotionally. I’m no Paul. But I can learn from him. 

This cancer journey has been such an incredible challenge in my life. It’s not easy for me to stop along the way and consider I need to be learning from my discomforts . I just want out of it. But in the moments where I can just stop and breathe and  just live in the present despite my discomfort I see how truly blessed I am. 

I don’t know where the road will lead but I’m on it – better to make the best of it when I can. 

Recovery and getting help. 

My wonderful husband Kevin has been worried about my surgical recovery in the aftermath of my fathers death.  It takes a long time to recover from nerve surgery and I haven’t been sure how I’m supposed to be feeling. I notice small improvements but then I’ll have a bad day. Physically and emotionally. 

I’ve been a wreck about my dads passing and we are planning his funeral and when you are trying to get family in from out of state and kids in from colleges and high school teens schedules it gets a bit crazy.  So Kevin has taken over some of the calling to funeral homes and to the reception place. I’m sure passing some of this off is a good thing.  Giving up control to others is not easy for me. I’m a good planner but I’m just not up to doing all that I’ve been assigned. My brother and I have been splitting tasks and he already planned the memorial for dad in Florida. I feel I need to really help plan the funeral up here in DC. But I’m going to have to give up some control. I need to heal. 

Since Kevin was worried about my recovery so was I. I encouraged him to write my surgeon. Which he did. And yesterday on a Saturday he wrote kevin -twice-back asking some questions and concerned about how this death and the grief I’m carrying is effecting my recovery. He is a great man. I’m lucky we found him. He asked if I was moving enough. He also wants to see me next week. He thinks I need to get into PT. In a pool. If it’s warm I’m cool with that! 

Kevin told me what my surgeon said so I thought about it. I’m not moving enough I’m stuck. I feel like when I get up I can’t do much and I often end up hurting. I’ve been walking but not enough. I’m not trying. I’m down. 

So I decided to get my butt up. I popped a little more percoset. (I take less than 1/2 a pill a day. I’m so weird about meds.) but the amount I take helps so that’s good. I got my shoes on and I went outside with my phone and just walked around. I took pictures and I took a walk. Then I came back in the house a couple hours later and I didn’t go back to bed until bedtime. I hurt some but I was ok. I felt kind of normal though. Like a person living in my home. Not a patient. 

It’s been easy to just stay in bed BC it hurts to get out but once I do I realize it’s what I need to do. I need to recover physically and mentally. 

I’ve had calls from caring friends. A couple encouraging me to seek therapy BC I have been through so much. My friend Jon told me that he knew I was strong but I had been through more stuff in a short period of time and I needed to seek professional help. I think he worried I might be upset but I so appreciate that he cared. It has been a horrible time and he reached out. I’ve been to lots of therapy so I fully agreed I needed to go. But getting my butt there might be hard. But I decide not to listen to all my buts..  I knew I wanted a person older than I am so I found Polly and she sounds nice and caring and I am hoping to meet her next week. I will be downloading on her (a new term I’ve seen streaming tv shows). She may be on the floor after I finish! 

I’m thankful to Jon for saying point blank “get some help”.  I was in a bad place for a long time even before my dad passed.  Jon ignited a spark in me to get myself together again. I need help to do it. Therapy will be a gift to me. 

So yesterday I took some photos on a gorgeous fall day. I wanted to share them with you. I love fall the the season changing and it reminds me that I am in a tough season of my life but my season will change. But I need to have my mindset right and push my body some to get there. 

Facing surgery. 

Tomorrow is my surgery day. I’m nervous which is normal. I feel a little bad about feeling nervous because I’ve prayed for for so long now for someone to give me some hope to help ease my pain. I finally found that doctor and I should be excited. 

I was excited early on after we got the ok from the doctor that he’d perform the surgery.  But as it’s closed in I’ve become less excited. 

I think in part because it’s surgery and that’s scary but also I want to get my hopes up that it will help reduce my pain a lot but then I’m afraid to get too hopeful. 

I want to be able to get out of bed and live my life.  Last spring I had pain as I’d had for over two years but I was dealing with it   It wasn’t optimal but I had a life outside the confines of my home and bedroom. Now it feels like such a reach to get that life back again. 

I’ve had to get my mind around my reality. It’s been hard. I was steadfast against taking any RX medications. Now I realize I may have to take some medications even after my surgery is over.  I’m taking some meds now BC once you get to a certain pain level ones stealth refusal to take medications is easily changed to give me whatever will make not hurt so much. 

I had never taken an opiate before but I have now. And even at 1/4 dose those suckers work. And I can see why people become dependent on them for pain relief and I can see how they can be used recreationally causing addiction. They make you feel good. So far I’ve only take a total of maybe 4 pills in all the months I’ve be feeling badly. I didn’t want to become needy for them. I so take Valium which for some reason helps my discomfort but I take that sparingly as welll.  I wonder after surgery where I’ll be with this. Directly after I’m sure to need pain meds. But I won’t know about the long term for a while. 

 After breast cancer surgery I didn’t take anything for pain and the pain was bad but doable for me. But I’ve read since that It’s good to take pain. meds after surgery as it may lower the existence of pain in the future. It has something to do with the brain and the nerves getting a rest from eacother. In fact in some cancer centers woman are given general anesthesia and a nerve block. This has been researched and it seems it also helps lessen the chance of post surgery long term nerve pain.  

My mind kind of goes everywhere today. I need to shower tonight. I have to be at the surgery center very early and my surgery is early. I have to leave the house before my kids get up. I need to get things ready so I can sleep (hopefully) as close to our departure time as possible. I have to wash my surgical area with some special soap before I go.  I’ll need to take meds before I go. I can’t eat after midnight. So I have planned a second dinner at ten.  Trying to get all this straight while being nervous is kind of overwhelming. 

I’m lucky to be surrounded by people who love me and who I love. I also have my sweet dogs milling around trying to help the take edge off of my nerves. I love how they just live life in the moment except when it’s almost chow time. They seem to anticipate that. It’s nice having my golden Rudy here. He chooses to be with me over playing in the yard with his buddies. He’s gotten a bit heavy -we will work on that with some ball throwing when  i am feeling better. 


Kevin -my husband- has been incredible through this. A better friend and partner I couldn’t ask for. You don’t realize until your sick how much it effects the entire family. This has been a 3 year ordeal. My kids have seen me at my worst through this. And I’m sorry for that. Maybe after this is done and I’m feeling better I can make it up to them in some fun way. 


Right now, I think I’ll do some meditation and prayer. That should help center me I hope. I’ll picture myself whole and walking on the beach.  Or riding my horse. I’ll think of the endpoint -focus on the outcome I  want. 

And maybe I’ll focus on the meal I want after surgery and I’m through recovery. 

I like to eat.  

Thanks to all who have sent me notes and have prayed and thought of me through all this. Keep me in your thoughts and prayers at 7am tomorrow if you can. 

God Bless. 

😘😘

Sitting on the deck

Earlier today my pain level was eight. I didn’t wake up with that number but as I get started in the day which usually means sitting up in bed and eating breakfast the pain level some days increases quickly. That’s what happened today. 

Last night I took a walk – but not my usual walk -it was dark by 7 o’clock and I think I was kind of shocked that fall  is here and it’s going to start getting dark earlier. I realized I slept through most the summer like Rip van Winkle except for I was sitting in bed -kind of a bummer. Anyway , last night I went into our  gym which is in part of our barn and I walked on the treadmill and I think that may have been the catalyst to my pain today. When you’re on the treadmill and you’re kind of stuck in one position when you’re walking and since I’m on some medication that can make me a little off-balance I was holding on with my “good” arm. It began to feel uncomfortable and I could tell this probably wasn’t a great idea and I stopped after only 11 minutes but the price was be paid today.  Walking on the lane is much more forgiving. I’ll have to make an adjustment to my walking schedule from now on.

Not gonna lie I can get myself into kind of a tizzy when this pain starts to flare up. So I quickly took some Valium which seems to calm me down and relax some of the muscles in the areas where I get pain from the nerves that are being pressed on. Or least we think they’re being pressed on. But we will know soon enough. When the Valium kicked in I jumped( ha ha in reading this as I edit I must say jumping is the wrong word- maybe slowly stepping is better) into the shower. Which for me is a big event and a difficult one. But today the warm water felt good falling across my body. I stood there just letting go of my anxiety and I let the water wash away my angst. After the shower I dressed which is another huge feat for me -so I got back in bed and I realized I was still feeling a lot of pain so I took about a third of a Percocet. A few of my doctors have said to me that I take baby doses of medications and I need to take more. That’s all true I don’t like any meds so I tend to take a little bit at a time but unfortunately when you take a little bit they only last a little bit of time. 

But today I took advantage of that time. Usually when I take Percocet and valium I am usually on my way to the doctors so by the time I come home the pain has returned and I’m exhausted so I go back to bed. But today I had nowhere to go so when the Percocet kicked in I had this feeling I needed to go outside. So I did.

 I’ve been hearing a lot of banging from next door. Our neighbor is putting up some sort of fencing in the backyard and Kevin and I haven’t been able to figure out what animal or animals are going to go live in that enclosure. So I went out to watch him – to try to figure it out. I guess I could ask him but I don’t really know him-  he’s the grandson of our deceased neighbor June he and his girlfriend moved in last fall. My husband has met him and I told him maybe he should go ask him what he’s building  and we both laughed. It’s so silly. Sometimes in the country you avoid people and other times you’re helping them take fallen trees off the lawn.  It’s a weird dynamic out here. You don’t want to interfere but you’ll help when asked.  My only concern with his fence is that it is really close to to our dog fence and whatever he puts in there will be face-to-face with our dogs. I’m thinking it may be goats because he has a shed and now that shed now has a new dog door sized hole in it. Often used as goat doors. He could be moving his dogs to the shed but I don’t think this is so. If it is goats I  wish he had built the fenced in area on the other side of his shed where there are no people that would be bothered by the constant noise of goats. And they are noisy I had some. I liked having them -sort of-but I don’t miss them! And my deck is right there very close to this new enclosure. My neighbor is a bullrider as a career – so I thought maybe he could be putting a bull over there but the fencing doesn’t look like anything that would hold a bull. The mystery will unfold or we will just ask him. But I told Kevin to get ready to plant some trees or bushes depending on what animal lands there. Bc I don’t want to sit outside on my deck with the cacophony of my dogs barking at their animals. Maybe bushes will be a buffer from goat noise.  

Once I was on the deck and I was done spying on our neighbor something just pulled me to sit down on one of our gliders and just relax. I hadnt been outside like that in weeks and weeks so I sat on the glider and I meditated and I fell sort of asleep had some weird short dreams. I prayed and I just sat enjoyed the sounds around me . The birds were not gone like I thought they were floating around in the trees and singing. I enjoyed hearing the sound of my horses walking around the paddock and the chickens clucking  in their yard and I even enjoyed the traffic passing by the front of the house and the neighbors chop saw whirring away. The sun beat down on my face and on my legs and feet it was beautiful and glorious day. And for a long time today I didn’t haven’t much pain. The wonders of drugs. For a while I was part of the real world.

A few times I began feel guilty about sitting out there. Because I try to take times when I’m not in so much pain to catch up on work for our business and I definitely had some things to do. But somehow I was just able to push that guilt  away and I was able to enjoy myself and relax. So unlike me. Must be the drugs. 

Today I was feeling thankful. Last week, I finally found a surgeon that is willing to operate on me –finally. We have a surgery date in a couple weeks. It’s like a huge gift but i’m almost too afraid to be too hopeful about anything. I’m so tentative about everything. This definitely isn’t the way I like to live my life- being tentative. It’s definitely not something foreign to me. But it’s something that I try to avoid. I try not to look at things in a negative way but this journey has been so filled with ups and downs (and a lot of downs )that I just can’t get myself too hopeful for anything. But for right now I’ll be thankful that I have planned surgery with a hopeful positive outcome .

But for today I am mostly thankful for just being able to sit outside for an hour and was able to enjoy the beautiful weather and beautiful scenery in my backyard, and the fresh air and a time to reflect. After I got up and went back inside I felt the need to look at the Dogwood tree out front of the house  that holds many  of my bird feeders. When I stepped out, I heard the rustling in the bushes and I went stood under the Dogwood tree and looked up and saw a little finch looking down at me along with a nuthatch. I smiled up at them and said hello. They flew off to the tree at the other corner of the house. I turned away but caught a few other birds moving about out of the corner of my eye. They are back. The feeders are full -and because my husband loves me and knows the birds bring me joy they will stay that way. I look forward to being able to fill the feeders myself again. I may even treat myself to a couple of new feeders when that time comes. It’s the little things.

Today for just a little while I felt normal again. I felt like I will feel well again and that there is that hope in me and that was good. Today was a good day. Today on the deck. Getting a date for surgery. Things seem to be looking up. But like I said I can’t get too hopeful. But I can be thankful for the time I had today just enjoying being outside being part of the world. It was nice to feel like a normal human again – even for just an hour. 

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Postscript – Kevin asked the neighbor what type of animal would be living in the new enclosure he was building. And it’s not goats! It’s a mini-donkey and maybe a companion goat(I hope not)  or another companion donkey(I hope)! I love donkeys and have wanted one for so long so now I’ll have one right next door. Perfect! 

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/