Recovering

Some improvements in post-cancer care – and with me too…

If you have read my past blog posts you know I have dealt with four surgeries since fall of 2016 to deal with the pain I ended up with after breast cancer treatments.  My last surgery in Feb of this year was a grafting surgery and it has involved a long recovery mixed with many months of PT.

So here I am almost 6 months out and I have been working hard in PT to get this arm moving. I have found an incredible PT team that is well versed in my issues and have been specially trained to deal with them. The program they follow is called ReVital and it is a Rehabilitation program for cancer patients.  It encompasses many forms of rehab- not only PT. Though some cancer centers already have rehabilitation in house some don’t and these participants are highly trained to deal with many issues during cancer treatments and well after.

There are so many facets to cancer- – fighting it being one – recovery being another – and  the during treatment and post cancer issues like pain, depression, fatigue, disability etc being another. For so long this latter facet has poorly addressed. But I am seeing and increase in available resources including rehab and also more written about post cancer pain- this implies that more cancer doctors and  pain management centers are becoming more aware of the issues- and the reality of the problem being acknowledged. In addition the cancer doctors themselves are also learning that their patients need to be fully served when they are facing cancer treatments and they are beginning to understand the potential residual effects that these cancer treatments can impose on patients- sometimes symptoms showing up years after treatments end. So now we see more of these docs being proactive in having the ability to refer a patient for help when they begin to complain about their issues.

This is a big deal for many of us who have had to go to plead their cases to doctors who couldn’t understand why we hurt so badly after our treatments. We weren’t supposed to complain. We were supposed to be happy to be alive. And we are- but we need to be heard and believed when we say we hurt after our cancer treatments are over.

I made a mistake after my treatments ended I should have gone right to PT- I did go when I had an odd and very uncomfortable nerve pain show up basically over night.about three months later. Would my pain issue have not occurred if I had don PT before that nerve pain reared it’s ugly head? I don’t know. But I thought when I had ongoing issues that my docs would have had my back. But after PT the issues persisted  on and on and my cancer surgeon scratched her head and kind of pushed me off into the unknown to try to find someone to help me figure it out. I went to numerous – like a lot- of doctors over the following couple years and I got nowhere.

My world came crashing in midway through 2016 when my pain hit an all-time high and I was bedridden. Many doctor doors closed on me then, too many. I felt more alone then I had ever been. I was at an all-time mental low. Then finally when I yet again went to plead with my cancer surgeon for some help and she treated me literally like I had a mental issue and not a pain issue that was the last time I saw her- and I went home despondent.  I was in a very bad place. And it took prayer and tenacity to keep going and finally I found doctors who wanted to help me. Who weren’t afraid to try.

Nobody should have to go through that!  Before cancer I didn’t have the pain – after I did.  Radiation damage is now recognized and talked about in the cancer community and the fact that it can pop up soon after treatment or years later is being discussed more in-depth.  Chemo causes its own long term effects.  We are warned of some of this before treatments begin. Like deer in headlights we are frozen and see the treatments as the only way to get safely off that awful road.

In my hindsight world I would have not gotten radiation after my lumpectomy. I was early stage. Did I really need it? Maybe I would have gotten recurrence in that breast- maybe not. But the pain I have suffered since my diagnosis – 6 years ago now- has been very very hard. And there have been times I had so many dark thoughts. Looking at it in the rearview  -I think I would avoid radiation and take my higher risk of recurrence (because it exists anyway) to avoid the pain. But that is what I have learned and sadly not what I did.

It may be that we who suffer severe pain from our treatments might never find a life that is actually pain free. But what we do need is the support of our doctors when we find ourselves in this very difficult spot. We need medical professionals who can help try to get us to the best version of feeling better that is possible.

I thank God that in the 6 years since I was diagnosed that we are seeing these improvements in this area. I think the surface is only just being scratched and there is so much potential in this area of patient care that I hope we see more and more improvements in the years to come.

As for me – I have made some good progress since this last surgery.  I have been in PT since mid-April and I still have pain but my arm range of motion (ROM) is vastly improved. We have hit a point in trying to improve my ROM where I am getting more pain flares.  I won’t go into all the medical reasons why but they PTs seem to think this is ok. For me it is easy to get nervous and discouraged. It is so easy for me to want to NOT move my arm – or do my exercises – but I force myself.  One thing I seem to do on a regular basis is to overdo things and get pain flares. Many times I don’t even know what I did to flare – that is frustrating.

But I move forward in fits and starts.  We joined a health club with a pool because I have a rekindled love of the water. I was able to get into the ocean and past the breaks in the surf. I did get pummeled by a wave once – that brought back memories. I have kayaked using the paddle sort of- I suck at it – I am very glad to have peddles at this juncture. I have been in the gym doing light workouts and I have ridden my horse. But I have also had a number of pain flares that side-lined me too. There is no straight path and I really still have no idea where I might wind up and I don’t think my forty PT visits my insurance allots is going to cover what I need. So I hope they will extend me.  That can be a battle too.  I have learned not to expect smooth sailing. But I am ever so pleased when something does go smoothly.

Before cancer I was in great shape.  I was strong. I looked fit. And now… well my version of strong has changed- but I have goals – but they have no end dates- I just keep extending them.  I am trying not to be so vain too. I am hard on myself for gaining weight, for aging…I need to give myself a break. I am trying. Trying should be my middle name. I am always trying- even when I don’t think I can move my feet out of the concrete- somehow I just keep trying. …I don’t know where I will end up but at least I keep trying- and that is not a bad thing.

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This is in early July. I have even more ROM on the right side now. This was an exercise that did flare me up. When I began PT I was at about half this range.

Guilt

Author Note—Each day I have meant to break this unplanned writing hiatus but it just hasn’t happened. I have plenty of topics to write about – I just don’t make time for it- or when I do the words seem to fall flat. Usually when that happens I know maybe it because I am not being as honest in my writing as I should be. Sometimes there is a balance being able to be honest and keeping a boundary in my writing so as not to bring hurt to others I care about. Sometimes I just can’t find that balance and I don’t post what I write – but it still exists perhaps as a journal entry – or something I can go back to later. Either way the words inside me have been purged and sometimes- if I am writing in distress -that helps and there is no need to send it out to the “webisphere”.  But I want to make writing my habit again. I really do. So I just need to DO It!

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Soon after my son – I am going to call him SonA- went out of state to rehab I found myself sitting in front of his PA at the primary care office we all go to. I was there with another family member about their medical issue – and there I sat quietly in the small exam room- but there was that elephant in the room. PA knew about SonA and that he was in rehab. We had briefed him on the phone about it. So I wasn’t sure if I should bring it up to brief him on the latest info or stay quiet. 

 I didn’t want to bring SonA up because it was my other family members time but between the hellos , how are you’s and getting to the medical issue at hand – it came up. It began with just an update. SonA was going to be moved to a transitional program because there was an issue with insurance. A big issue that had required involving PA -but that is another story entirely – but it had been rectified by the time I saw PA. SonA was to look for employment, go to group meetings daily and see a therapist weekly. 

We chatted a bit about addiction and mental health issues. And all at once PA looks at me and tells me not to feel guilty. I looked at him trying to form a sentence – was I going to cry? He continued to say that so many parents blame themselves for the choices their kids make and that I shouldn’t because this was not my fault. I thanked him and told him I didn’t feel guilty because I know the choices SonA made were his own. Just as any bad choice I have made over my lifetime is not anyone else’s fault. Even though I blamed some of them on others in the past.

But I wasn’t really being truthful – there is guilt – it is multifaceted. So often I think to myself – did anything I did as parent push SonA into addiction? Did we have a bad phone call while he was at college and he went off angry and with a Fxck You attitude and guzzled a bunch of booze and that was the domino that turned into alcoholism? Did I not try hard enough over the years to get him to talk to therapists we took him too- where he would chat about his brilliant ideas (and he is amazingly smart) but he would never open up about his troubles? I begged him to give them a chance – he really never could. Or as he was growing up did I add onto the trauma he already had from being and adopted child? 

I wasn’t a great mom. I was in over my head. I got angry, I yelled, and I spanked my kids. I believed in spankings. I don’t anymore. My dad believed in spankings, we got the belt, or we were threatened with the belt. As a mom, when the kids were young, I had many convos over spankings vs no spankings, time outs vs time ins etc etc. All I can say is in hindsight I have changed my tune on many things. But I know I thought when I was raising my kids I was doing my best – and I was. But now I spend time hating myself for being so rigid, so stressed- just not the mom I thought I would be.

 I have guilt that I am trying to work on. I have apologized to my kids. Told them I hope I was fun sometimes. Was I fun? I think I was. I remember shopping in Walmart so many times for art projects that we could do on a hot summer day, or after school. We painted, and glued. Once or twice we all made gingerbread houses. I played with my kids, I love toys and I loved to play. I remember all of us dancing in the family room to classic rock. So I was fun too. But I still have guilt. 

I guess when you have kids that go through hard times because of their choices any parent may feel some of the way I do. I truly know I did not make my son into an alcoholic, I know that my son has had some mental health issues for a long time. But what I do know is that we spend our lives trying to undo the damage that our childhoods inflict on us. I hate to think I contributed to my son’s issues.

I think even the kid who grew up with the best parents like my husband did will not come out of childhood unscathed. He himself is an alcoholic with 34 plus years of sobriety under his belt.

We never come out of childhood without battle wounds. As we are developing our brains as young kids – becoming a more fully formed individual -we are effected by so much around us.  Then we spend much of our lives making choices based on our early experiences and we inflict that damage onto others and but hopefully we give them our good stuff too- it is why there are cycles of the same behaviors in families. If we are lucky and we begin to see the issues then we can begin to do the work to better understand ourselves –  and we can learn how the experiences in our lives have driven how we behave…and then we can work to have better reactions and to make better choices. Some people never get to this self discovery part. So I guess I should be happy I have. 

But that still doesn’t take away my guilt. I just have it. I want to forgive myself for not being an awesome mom. I am working on it because I do know I did do some good things. But there are so many things I would like to redo. Maybe thats why some people dive into grandparenting with a vengeance so they get a redo. Some things are so much more clear in hindsight. We can do so much better when we have gained some wisdom. 

SonA called me early on in his rehab and I again apologized to him. He said it wasn’t my fault. He said that I had been a good mom and he had been a shitty son.  That hurt too. You never want your kids to feel so badly about themselves. 

I told SonA he wasn’t a shitty son. Had he been challenging? Yes. But I told him he was a kid and I was the adult and I have to own my part- there were times I could have done better – responded better.  He has a beautiful mind – a beautiful soul. He just has some things to work on if he will trust the program he is in and the therapist he is seeing. I don’t want him to live with guilt. 

Are we just destined to it? To live with guilt? Maybe when we feel guilty it is an opening to begin to dig deep into that feeling – own the mistakes, learn from them and heal. That is what I am trying to do. Own my mistakes – look at them and then work with them – if I need to apologize for something I do.  I try not to soak in the guilt because I get stuck there and that isn’t healthy.  I am a bit stuck now. I probably need therapy and will look in the fall for someone – I have so much going on this summer. Maybe I will pull myself out before then. Writing this helps…even if the mom police want to shame me. 

But the good thing is I am still a parent and I  get to be an improved parent to my kids. I get to make the adjustments and changes I needed to make. My parenting goes on though it has a changed role now that they are young adults.

But guilt can run deep. I have learned that others might forgive you, God forgives you, but sometimes the hardest thing to do is to forgive ourselves. 

Ups and Falling Down!

The other day I took this picture:

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When I see this photo I see accomplishment!

I was trying to mark a milestone.  I had just accomplished the feat of taking the wheelbarrow out of the barn and rolling it along as I scooped up horse manure. This may sound super boring and probably an unsavory job to many people but it is a job that I happen to like – you can get a lot of thinking done when you scoop poop- and you often have the company of one or more farm animals. I have been unable to do this job for quite a while because of my chronic nerve pain in my arm and back.  So I was having a “look at me ” moment.  I thought if the nerve pain didn’t flare up too much the next day I would post this photo and brag on this accomplishment.

But then this happened!

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Do you like the dog as prop in the photo?

This must have happened because I was so full of myself from picking up manure! I was in the chicken yard grabbing some items I left in there and I turned caught my foot on the hose as I was stepping forward.  It was one of those falls where you think you have caught yourself and you expect to be upright but you end up on the ground. I landed on my side and my rear – and on my non- nerve damaged side. Thankfully.  I had to make a nice turn to end up that way. I do think one of my guardian angels helped that move because I don’t know how I landed like that.

On the ground my first thoughts were “did I land on a chicken?” (I didn’t – they all ran far away – chickens!) and “ouch my ankle” and then “this is not going to sideline me”. NO No no!!  The next thought was me wondering if my cowboy neighbor who was out feeding his equines saw me fall. (Kevin was nearby but on a loud tractor mowing a field).  I did not want my cowboy neighbor to see me on the ground! It is bad enough that I need he and his wife’s help for all kinds of things (they are young and able!) but I didn’t want him to have to come ask if I needed help getting up off the ground- I would feel ancient.

So I took a deep breath- assessed the damage and hauled myself up off the ground.  My left ankle was tender. But I was ok…I was not in that much pain–lie lie- I was. But I went over to finish some things for the horses including some brushing all the while hoping they didn’t knock me over!  I just could not fathom that something was going to take me down for the count. But I knew I needed to assess the damage to my ankle – both ankles hurt but the left seemed to be getting worse by the minute. So I went into the gym part of our barn and I took off my boot. I could see where I twisted it. Not too swollen.  Good.

I had twisted this ankle before years ago leading a horse down a hill.  But this fall was worse- it hurt much more! I was a bit worried but I waited for Kevin to get off the tractor so he could take a look. He thought it was a sprain -but because it was getting more painful pretty fast we opted to go to the urgent care for an x-ray.  It didn’t take long and they were fairly certain I had no break – but gave me the films with instructions to see primary or ortho as needed – and they locked me into a boot that felt like a ski boot and off I went.

I will admit to moments of self pity and negativity.  I am just beginning to get back in shape and being able to do more things and I did not want this to slow the progress. And I was back needing someone to help me – poor Kevin has had enough.  But I decided not to make it bigger than it was. It is just a sprained ankle. It will take time to heal but maybe I can work around it some and keep moving some.

I got home and broke out of that boot and iced my ankle all night.  I woke up with pain the following day but it seemed less than the day before which surprised me but gave me some encouragement.  I still felt like I needed the boot because I did want to try do something constructive with my Saturday. We always have a list miles long of things that need to get done. I was in the middle of spray painting a wrought iron table I picked up for $50. I wanted to complete that project. So I put on the boot and Kevin covered it with a trash bag and I got painting.  I was able to stand just fine and after a while I became so involved in my work that I forgot I had a sprain (and nerve pain for that matter!).

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Spray Painting!

Today I woke with less ankle pain again. I am paying for the spray painting with some nerve pain in my arm and back but I expected that.  I still can’t move my ankle certain ways. I feel like the foot needs support.  I had taken a knee brace and somehow made a foot brace out of it and that was providing support. The boot seemed like overkill. Today I went to the drugstore and grabbed a couple ankle compression bandages and an ACE wrap. I will keep some form of protection and compression on for a while. I think this is going to heal sooner than later if I can keep from aggravating it. I can see how I will still be able to do most things. I just need to elevate it some each day.

Well it is funny how one minute I was so excited about picking up manure and the next I was flat on my butt with a sprained ankle.  That’s life . You just have to take your joy moments and appreciate them. I will be back picking up horse manure again soon enough.  I am grateful my PT is going well and  that I am doing things I haven’t done in so long. I have hope!

 

 

 

 

 

 

 

 

Updates – figuring things out

It has been a good while -yet again- since I have written on my blog. I am trying to find the time and motivation to write again. I guess the good news is that I am busy. Busy doing life. Which for a while I was sidelined from. So busy is really good news for me.

I am about 10 weeks post surgery. I am a few weeks post a great vacation that we took to Wilmington NC and Charleston SC. I am grateful that I was able to take the trip. I got in the truck for the drive down south and a pain flare began. I likely did way too much preparing for this trip. Packing was the the likely culprit that took me from feeling pretty well before we left to being in bad pain on the drive down.

I was pretty bummed out. My recovery from surgery had been promising. I was feeling well. My pain level was down. But what I had noticed was that things were backsliding some. Things in my surgical area felt tight. I had been told to massage my scars and that they would actually get softer in time. My nasty radiated scar is gone so that leaves me with three new scars but they aren’t radiation damaged scars. I wanted to be positive but it has been hard. I am four surgeries in trying to rid me of this post breast cancer therapy pain – so I get defeated sometimes when I feel the pain intensify.

In that truck on the way to Wilmington , NC – I took pain meds- I just had to because this trip was important. I wasn’t going to mess it up. Kevin and I needed to get away.  We are caring for my mother in our home. And she is a wonderful person but Kevin and I hadn’t been away alone much in the last few years – so it was time. And well it was also our 20th Wedding Anniversary. I wanted celebrate that milestone!

I felt a lot of pressure going into this trip. I planned it. I love planning and I was excited to see the areas we chose to visit. I will write more about that trip later but I will say it was a lovely time. But I felt this pressure to not mess it up because of my pain. So in that truck I  was so frustrated with this pain flare. We cut a trip short last fall because of my pain and I was so disappointed. I really wanted to be able to take this trip and not have to cut it short. We were to be away for a week.

I was supposed to begin PT when I got home…another thing I was skeptical of because I hadn’t found any PT that ever helped me. So as we were driving I took out my Ipad and began searching for some type of PT therapy that might be designed for either breaking up scar tissue or for cancer pain in general.

One search led to another and I ended up finding a PT group near my home that performs a type of rehab therapy for cancer patients called ReVital.  I have been going now for a couple weeks. And the therapy group I am seeing near me is really great. I knew from the first visit they knew what they were doing. The therapist asked all the right questions. She knew about radiation damage and issues due to chemo. They work on breaking down scar tissue and are trying to stretch muscles and tendons in my arm that are damaged by radiation and were also made immobile due to frozen shoulder – I also had that after the cancer treatments.

PT is not without pain but the first day the therapist told me straight. If I don’t get this arm moving I am just going to get worse. So here I am going diligently to PT. The fact that horrible scar is gone is allowing me to do more than I would have been able to do if I still had it. So I am ever so thankful to Dr. Del Corral for removing it.

I feel hopeful for the first time in a good while. I know I will probably flare again (and I had a flare the first day of PT and when I left that flare was gone so that really gave me hope). I know there are steps forward and steps back. But I have been fighting for almost three years to get my life back. To feel normal.

Yesterday I drove my mom to her haircut appointment and while she was there I ran to the hardware store and to the grocery. I ran into a friend in the grocery and we chatted for a few minutes. I hurried through my shopping so I could get back to get my mom. It sounds so normal to people reading this I am sure –  but for me it is huge. Just to be able to drive and to have that freedom is so great. And Maybe some of you know this but I have had anxiety for years and shopping alone isn’t easy for me and for a long time I never did it. And now I am doing just that. I am trying so hard to just live life. Normal stuff is good.

So on that trip down south I didn’t know what I was getting into when I booked an appointment for PT. But sitting in the truck I felt like maybe it might be good. Just keep moving forward. That is always in my head. When we got to Wilmington I told myself I was going to enjoy our darn vacation. I was not sitting around! I was going to see stuff. And Kevin – as always- said he would do whatever I needed to do. There was no pressure from him…it was me pushing me.

So the ice pack became my good friend.  I toted it under my arm for much of the trip. Anti- inflam meds were needed daily and a few days into the Charleston leg of our trip I realized I was feeling much better – we had eaten and shopped our way through that city – and we had clocked some walking miles on that trip. It was very good.

All I can say is thank God for ice packs and thank God for the wonderful husband I married 20 years ago in April 1999. I often still cannot imagine my luck.

I am so grateful for being able to do normal things. I am grateful for a PT group that gets my pain situation.

And as my dad would have said- “Keep the nose of the plane up Anne” – I am trying Dad  – I really am.

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Southern Mansion South of Broad Charleston SC

Meet Yukon

Yukon

Update – ok so after many attempts Yukon wouldn’t get in the trailer. A storm was coming in and I’m sure he sensed that before the humans did. So he is now scheduled to be brought to us her on the 28th – after we drop the human boys at college.

Stay tuned!

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Today we pick up Yukon. (Rescheduled for aug 28). He’s a 19 year old quarter horse from Days End Farm Horse Rescue. Days End is a well know rescue in Maryland and probably in the Mid -Atlantic and now they will become nationally known because of a partnership they have with a non-profit whose job it is to spread the word about horses in need of homes -esp companion horses -which are horses that can no longer be ridden. There are many places for companion horses – like in our case we need a buddy for Harley.

Days End (DEFHR) has made national news from time to time for their rescue efforts after natural disaster like Katrina. When I go to their farms (they have two now bc of the sheer number of horses they are helping ) I always am amazed at the dedication of the staff there and the care they give the horses.

When we set out to meet Yukon last weekend we headed west towards WV into the beautiful hills just East of the Catoctins. We landed at the farm in Maryland which is shy of the WV line. It was pretty and clean and the horses – most of them companion horses- were well kept.

We walked back with Kelly who is a caretaker for these horses. It’s a big job and she does it well and with a smile on her face. She was thrilled to introduce us to Yukon who is a big chestnut gelding. He is immediately friendly and reminded me a lot of Harley. I love gelding because of their puppy dog like demeanor.

Yukon is a bit nudgy for treats as is Harley. Nothing we can’t handle. I’m told he likes to get in and out of gates first. Airy was like that- except she was last to come in off pasture. Grass was king to her. She loved that more than anything.

Yukon led well and was happy to stand in a grassy area and eat grass as we swatted away bugs.

Yukon has navicular issues which is a bone in the hoof of the horse. I won’t go into details as I’m still learning about it. But let’s just say he has sore feet and is on medication for it. I’m looking for supplements that can alleviate inflammation as well. He won’t be stalled like he is now. He will be free to walk around which is better for his foot pain. I think we will have to rake up rocks in the paddock as well. But the pasture will be a nice comfortable place for him.

So back out to Rohersville Maryland later today. He seems like he will be a great fit.

I’ll write more about him soon. I’m nervous and excited both.

Harley by the way is doing well. We keep telling him Yukon is coming ! More later….

Harley – who is Yukon?

choices and boundaries

Sometimes the wind gets knocked out of us. Sometimes literally like when we take a sudden fall – then you get that awful feeling that you cannot take a breath in for what seems like an eternity. Then you gasp and take the sweet air into your lungs- things begin to seem more clear  – less frightening.  Then sometimes the wind gets knocked out of us figuratively – some news or event might trigger this syndrome – while your breath is really there you still feel like you are drowning. You don’t know when you can come up for that deep breathe.

Sometimes I feel like I am in waves getting pummeled and then getting up and drawing breath in only to be pummeled again. 

Its been a time- feeling like the wind is constantly being knocked out of me- me trying to come up for air. Me wanting to write about things but feeling like I can’t or shouldn’t or both. But I think I can write now- but should I ?  I need to.

Sometimes people you love make terrible choices. People you love ignore your advice and offers to help.  Sometimes it is just too hard to watch.

Thats where I am. I can’t watch.  Someone in my family has made some very bad and risky choices.  I have confronted this person and they don’t want to stop and they don’t want help. They want me to accept their choices and I can’t – they are not safe choices.

In this “you do you” society (which has been created by the millennial genre) we are called upon to accept everyones choices.  Hey if you are into it then it’s ok.  To a degree I love this philosophy – I want people to feel empowered to reach for the stars, find your voice, live your truth. But the philosophy gets dicey to me if it becomes a way to enable bad choices. Hey if you are into it then its ok. Nobody is supposed to question anyone or warn them if their choices seem to be dangerous of even illegal.  We don’t want to hurt anyones feelings.  You Do You can be taken too far.

And I am not a person to enable anyone when I know their choice is harmful to them or illegal.  But what do you do when someone doesn’t want to hear your advice or offers for help?

I think there are as many answers as their are situations that we may encounter. It depends on the nature of the relationship  and I suppose the degree to which we each are able to watch things take a tail spin.

I just cannot watch.  I realize how little I know this person. That saddens me.

In light of the risky choices being made I had to create a boundary to not only draw my line in the sand but to also help save my sanity.  I knew I could not live day to day chatting with this person knowing what I knew.  Getting together and sharing space would just be too awkward now.  And they liked their choices and found nothing wrong with them. That is their prerogative I guess.  Sadly, they did not want to stop the behavior even in the wake of not being in contact with me and as it turns out other members of the family. I couldn’t watch the train going down the wrong tracks. I don’t want to see it crash.

What is left is heartbreak. I call it collateral damage. The family member assures us that there was no intent on hurting us. But sometimes our choices bring on damage that you can’t imagine.

The breath is knocked out of me. I am sad and angry. I promise myself I wont let this persons choices wreck my day. But it permeates it when I allow it too. It has effected our family unit. What a heartbreak.

I keep asking why? Why these choices? I have always been a why person. I have been to therapy and I have been told that sometimes there isn’t an answer to a why that makes any sense. And I suppose that is true.  I know this person has some buried sadness and pain. But even with all this I can’t figure out why these risky behaviors were chosen.

I know this person needs help but they have to really want it. When they shut out that possibility its so defeating for those who want to help. I want to shake them, I want to hug them, I want to scream….I want to help – but I can’t – not now.

For now,  I am not engaging in contact with this family member. I have made it clear that I need a break. I cant have daily interactions with this person knowing what I know – and frankly I think they feel the same.  A boundary is a consequence and a choice. Its my choice to set the boundary.  It is what I need in order to try to cope with this hurt.

I am sure some people reading this can relate- they may have been on one side or the other of this wall.  I know there will be a time where I can check in with this person but not now.  My open hand is always there if they want to accept help.  Always. Anytime.  I haven’t shut my phone off or blocked this persons number.

When you love someone it is so hard to see the person choose something that can hurt them and even others. It is hard to see the wall go up when they feel their choices are being questioned.  It is hard to not want to try to control it all. It is hard to know you have no control.  I know that the consequence of my boundary isn’t enough to make this person stop their behaviors and I am afraid of the the real consequences that may await them.

So I try to let go and live my life. Sometimes I wonder if I can ever forgive this person for the collateral damage they have caused.  The air of sadness that has permeated us. The feeling of rejection. That we aren’t important enough – that their bad choices are better and more important than the family that loves them. It hurts a lot and it angers me too… and then there is the need to help them that pulls at me – nags at me like itchy wool. Sometimes it all blows my mind and thats when it feels like the wind is knocked out of me.

But I get up again- brace myself and wait for the next wave.

 

 

 

 

Those little empty spaces- leaving them be.

I haven’t been to the barn since our barn cat Mango was hit and killed by a car last Wednesday. I’ve been recuperating from surgery. Sadly I can already feel in my heart what it will be like when I go down there -and Kevin has corroborated my thoughts -there’s an emptiness. He said it. This little cats death left an empty space.

No more will she come trotting down from the hayloft -her voice preceding her. Nor will she play chase with my horse crop as I flick it along the cement floor of the barn aisle. Nor will she try to bite me if I wanted to stop petting her (she wasn’t perfect:)). It’s just a dusty mess of emptiness. The barn is little more hollow. There’s a vacancy.

This isn’t a post about our little cat that we lost. I’ve posted many pictures of her and shared her over the years. She was a great barn cat. Freedom was hers and sadly that freedom is what also left her with more risks like busy roads. But what this post is about is those sad little empty spaces that beings that we love leave when they die.

We’ve had a number of those empty spaces this last year. They hurt. They make us feel off kilter. While there is -for me -no comparing the losses of my beloved humans to our loved cat- it is a loss. Human loss for me sweeps itself under my feet and pulls me up over myself and then scorches my heart. The loss of beloved pets scorch my heart but don’t render me as dislocated as human loss. But they are still losses that leave empty spaces.

I am so uncomfortable in this emptiness. My first inclination is to fill it up. Because to try to fill it up is easier than facing the sad empty spot head on. With my loss of Mango I’ve sped through the thoughts of “let’s get another cat” to “I’m never going to have another barn cat.” I’ve learned not to listen to any of these thoughts in the wake of loss. I’ve learned that you just have to visit the empty space and eventually in time it won’t be so uncomfortable.

With human loss it is the same but on a way bigger scale. We can’t replace the person we lost with another. Some will try. Some of us will attempt to replace that chasm with anything that can make that space seem so much less empty. But inevitably there isn’t anything to fill those spaces. They never close but they become less sad and uncomfortable.

Kevin said he thinks if we are supposed to get another barn cat it will happen. We will know. And I like that thought. It allows me to face head on the discomforting empty spot Mango left.

I am learning. I don’t always have to try to quell my discomfort. I can learn to just let it be. I can let myself feel what I need to in the time that I need to.

So when I get to the barn in the next few days I think I’ll stand and listen not for what Mango took with her -the little steps and the loud meows- but instead I’ll listen to the silence that she left in her wake and I’ll be thankful that I knew a being like her that left that empty space. Bc those empty spaces we feel really come from loving another – and how scary can something that came from love be?

Faces on Paper 

The thing about feelings are they ebb and flow like the tides. One moment I’m ok. Having a good day. Doing fun things. The next I’m just something else. 

I wrote the post below in one sitting. After the purge I felt better went out had a great day with my family. We are down on the shore at our new cottage. I Sat on the calm bay during an eclipse that was anti-climatic here on our longitude and latitude but the serenity in the bay was medicinal as always. 

I’m trying to piece my way through these shift that I am experiencing. During the “normal” times where things feel more I balance I wonder if I am being over sensitive to the feelings I’m having.  But that’s the point my senses feel what they feel when they feel it. Body and soul. We have to honor what we are feeling. It’s so easy to push it away. I want to. But I’m also aware that this is a season of change and I will have to navigate it and face it   .  

So below is what I wrote two days ago and there has been an ebb and a flow again and again.  At some point maybe I will feel on a more even keel again. It been a long four years.

……

I sat crying in the shower -it’s a good place to cry. Hopefully nobody hears you. 

My sense of a numbness and a loneliness began about four weeks ago. It had be creeping up before that but it reared its ugly head in mid-July. A sense I wasn’t living my life, like I am living outside it it sometimes – a sense things have changed. I felt everything  is off kilter. Would it right itself? Will it? 

In the shower I felt the need to write. My words always form in the shower. Then I have to jump out dripping wet and run to type it all out. My words are never as eloquent as they are in the shower. The shower breaks me open sometimes. A cleaning of the body and opening up the soul. 

I think I am having a battle of body and soul. My body is trying to push my feelings down and my soul which usually wins is trying to push them up. The soul is protective and honest at the same time. 

I have experienced huge losses in the last two years. My father-in-law, then my dad -which was very sudden- and four weeks ago my mother-in-law. Add in the four years of dealing with the aftermaths of cancer and two major surgeries for that aftermath in six months and more to come and three teens that keep being -well , teens – my mom moving in – I guess I shouldn’t be surprised I feel the way I do.

I stood in the shower and drew a big heart on the wall and put my hand in it as I cried. Maybe I wanted to feel something familiar as I touched that wet or maybe I wanted it to heat up as a sign from someone who I loved that has crossed into the realm. I just wanted to feel something. And I felt sad so maybe that was ok. 

 I wanted something bc so many things seem shifted. 

Am I depressed? Shell shocked? Is it the meds I have to take?  Or am I just feeling the pangs of so much grief that I am holding in? 

My mother-in- law -Doris Sweeney- whom I called mom was one of my very best friends. She died July 18. She deserves a blog of her own and I will write about her when I can. I’m not ready but  I do miss her terribly. Sometimes I think maybe it’s wrong for me to grieve this loss so much bc this wasn’t my mom this was Kevin’s mom. Doesn’t he deserve to have this huge chasm of loss to himself? I feel like I am stealing his mom or the loss of her somehow. I know that’s not rational. But bc I must feel that way somewhere deep in my brain -my body is like a dam only letting bits of grief sink in. 

I think this and the fact that three people that I considered parents to me – even if two weren’t – have left this world. And crap do I miss them. 

My soul will win and require me to feel what I need to feel. It’s pushing me to deal with it all. I hope that it will get me off this rocking boat and help me to feel like I’m on dry sound land again. 

It’s lonely here. I have felt this loneliness before many years ago before I married Kevin. The alone feeling even when in a room of people. 

Kevin and his family brought so much light and balance  into my life. They have no idea. 

The other day at the memorial lunch I think I hoped it would feel like a reunion of family. That i would feel that warm feeling – like the room gets a bit warmer bc people love eachother and are happy to be together. But I just felt lonely. Nobody did anything wrong. It’s just that each of us was so sad and the part of our soul that touches each other was curled up hugging our own selves – protecting us. Or maybe it was just my soul was curled up and I couldn’t reach out. But everything was off. Sadness prevailed and was visible under the laughter and greeting of friends. Because the humans whose lives we were celebrating should have been there. 

It was a beautiful place and so many words of love were shared.  The gathering of friends was beautiful and I wanted to see my inlaws faces but all I had to look at were the many family photos we shared in collages that we all put together. 

Faces on paper were all that was left. 

I know I looked at the collages but I hardly recall any of the pictures. I even made three of the collages myself. Pinning the photos onto the framed boards one by one. I cried some. But I stealed away the feelings as best I could because other wise I couldn’t have done it. 

Faces on paper. And love and memories. I know this. But I’m not there yet. I know this is what life should be. Parents going before their children. 

Rationally I get all that. But I’m not there yet.  I’m off kilter, I feel this hole, too much has happened. 

I will begin counseling again but right now it seems too exhausting to tell someone everything that has happened.  Maybe I should give the therapist this blog post:) 

I just need a little time to see how this all processes. Writing helps. It does. It’s something that is familiar and balances me. Thank God for it. 

And God. I have written many times about my faith. I would admit  my faith has been tested sometimes in the last year especially. But in the last four I have had so many questions and some have been answered as best as they can be answered and others still flutter waiting for understanding that I might not get. But I think sitting in a church of any sort could help bc I feel a connection to God – but definitely not to a religion. I like bits and pieces of many but dislike bits and pieces too. But sometimes just sitting in a church worshipping and singing can help the soul heal. 

I sat on my horse yesterday. I longed for it. Needed it. For those few moments working with my horse some balance was in my life and that post horse buzz haloed around me for a good while.  But today that sense of unbalance of doing life but it really being part of it is back. 

I’m going out to paint some shutters for our cottage I’m hoping brush to wood will lighten this load o me at least for a while. 

There is a path that I must walk to get to a place of balance even if it is a new familiarity of my life. It’s changed the patriarchy and matriarchy that was once there is now mostly gone. What a gaping hole -albeit wound – it leaves. 

Lonely souls that have to learn to ride the rivers without a beacon ship. 

So much has happened my body and soul are trying to protect me I guess. Trying to keep the dam from breaking. In the meantime I’m floating down the river without a beacon ship  to lead me. Because now I -we- kevin and I and all my sweeney family -we- we are the new beacons  and I’m not ready to lead quite yet. 


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.