Chronic pain

pointless updates….

pointless update ? for writing exercise! …

I feel like the last two pandemic years have gone by fast and slow at the same time. I guess I never fathomed this would be our world for now almost two years. It seems unreal that this Covid virus doesn’t want to give us – and our hospitals – a break. My grandmother lived through the years of the Spanish flu – she did ok from what she told me -but she did lose an older brother to it. That is a loss that saddened her throughout the rest of her life. I only wish I had asked her more about that time. What it was like. Was it scary? How did they stay safe? I never fathomed that this would be our world 100 years later.

So here I am on the flip side of the holidays. I am just taking down my decorations. I am happy to say I was up for putting them out this year. Last year it seemed enough to put out the ceramic tree and a wreath. This year we had a larger tree- a $99 home goods find (love that place) – and other decor splashed about the house. I also planned on sending out cards – and I did send a few- but then I just got behind – or overwhelmed – or both. I really wanted to try once again to really dive into the season after last years flame out of the holidays and I did pretty well – the house looked festive and that made me happy. Its the disassembly of it all that is a bummer though – and time consuming.

After last years Zoom Christmas which included me trying to play the elf and have my kids -who were in three different cities- open big boxes of stuff while we watched – which brought laughs but was so weird- we decided not to do that again! We were going to have one child home for this Christmas. My Navy son got a 2 week leave. For this I was so very grateful. He was fresh off a sub deployment so I think having some quiet time and family time was much needed.

We had some family over on Christmas day and had some eats. It was a small gathering but very nice to be able to get together. For Thanksgiving we did the same (except none of our kids were here). We hosted Kevin’s family and my brother came from Texas – I hadn’t seen him almost three years! We left the invites flexible so anyone could cancel if they felt unsafe bc of Covid.

I guess we are trying to have some ability to go out and do things despite being in the midst of a pandemic. I am very careful and I am trying to still safely go out and live life. Maybe not in large crowds but to still get out and get things done and do fun things. My KN95 masks have become my accessory of necessity. And they go with everything. Sigh…

While we had my son home we wanted to take advantage of doing some things with him. Otherwise he would just game the entire visit and since I stink at it (and he didn’t invite me to play -probably bc I am horrible at it)there was little chance I would see him if we didn’t create some experiences for all of us. “Experiences” is a fancy word for doing stuff that forced us all together – and to do stuff and to maybe even – gasp – talk some during said experience.

So we went to the beach for a long weekend and we did a new years walk/run together- and really just chilled out. Then back in Maryland my daughter -who now lives in Chicago- flew in to join us for a few days. We hadn’t seen her for almost 18 months! Thats hard to believe! Again- experiences… some went well others not so great. One that didn’t go so well was us driving to a bowling alley only for it to be closed due to many employees being out with Covid (hey bowling alley owner? hello just stick it on your website or facebook page and phone message that you are closed- yes we called)-that was a bummer but an ice cream float experience waited at a nearby soda shop.. and we bowled another day- I won two out of three games bowling..yep and left armed because I can’t bowl with my other arm because of nerve damage. (I did use bumpers while two of my opponents opted not to us them(lots of gutter balls!)- so I had an advantage..will I take the win? –yep!….). And one day my daughter rode horses with me. All of her skills came right back. And we had fun. That’s what counts most. (and I am always grateful for my ability to participate in any activity after so much pain sidelined me for so long.)

I think we all needed to reconnect and these things helped forge that. My kids are off living their own lives and sometimes parents get put on the shelf. I remember myself back in my 20’s and I know that I wasn’t calling home weekly! And now we parents freak out if we don’t get a fast response to our texts to them. I now know how my parents may have felt as their children went out into the world. I guess it is the inevitable plight of parenthood….the letting go. So the reconnecting is special.

I have one kid who isn’t speaking to us at the moment. It is a bummer but I have now concluded that if I have 2/3 of my kids speaking to me that it is a win! If we get the trifecta that is a bonus! My kid that isn’t on speaking terms with us is mad at us when maybe he should be looking at himself. And I just don’t think he is there yet. He moved home for a time and it just didn’t work out for all of us. So he moved back to Florida. I can say in this situation I tried very hard to make it work and things didn’t go the way we hoped. I will give him space as he processes things and perhaps he will come around. I am always here for him.

I am trying to learn when I just need to step away and give my children space. It took some therapy to get there. I am a fixer. I want to jump in and fix their problems but I am learning I am not responsible for fixing my children…they have to want to fix themselves. I am always here to listen and give and opinion but only if asked.

When I had the two kids home I felt that old familiar mom feeling. That sense of purpose and place. It is not something I would have defined in myself when I was in the act of being a parent when my kids were living at home. I always prided myself on having many interests and I didn’t live vicariously through my children. But when they were all gone I felt the emptiness probably known as empty nest. I was surprised. I felt lost and as my kids went to find themselves – I have been left to redefine me. That is a work in progress.

My mom lives with us and though she can care for herself she does have health issues that require frequent doctors visits. And I have my own health issues so I have found myself in many medical buildings often during Covid. I go to PT weekly to get cupping to help with my chronic pain and I get trigger point injections every 6 weeks or so. I also have scans coming up and that gives me scanxiety.

It is what it is. I just try to move forward and enjoy my joyful moments- which include text from my kids- hint.. hint (they won’t read this – haha!).

So the pointless post -which I guess is kind of an update because I haven’t been writing much- is done. My message is life goes on – find joy where you can!

[My goal is to write more- it always is. If I can do it once a week or so just to exercise my writing part of my brain I think it will be good for me – ergo this post- but who knows if even that will overwhelm me too much. Its how my brain works now. It has been through too many surgeries (all that anesthesia!) and it has to deal with meds that take away some of its power to think straight! But my love of writing is always there. I have a million topics to write about…then I just don’t!. So we will see. ]

Be well- stay safe….

Bowling….Luke (navy son) would not remove his mask! Stinker.

My daughter learning the “gears” on my horse- Umay!
Soda shop…New Years Day walk/run

to loath or not to loath thyself?

I think I am surprised to find myself writing again. I really thought I would stop- I could not fathom sitting down to try. I thought over the last few months that- well it began before that really but came to a head over the winter – I had lost my way. I felt I was lost and was not sure of my purpose. I just felt stagnant and blocked. What little creative blood that was a trickle much of the time this last a couple years had become a drip drip drip. I know it is there as I feel it light up sometimes. Today I felt it when I received a notice of a local photo contest. And yesterday when some uncanny thing happened involving the IRS – maybe uncanny is the wrong word when using it with IRS – I heard the thought in my head- “you should write about this”. But as with so many of those same thoughts, with that spark that comes with those thoughts the light quickly flickers out.

This past couple years has been hard for me and my family. I guess I would venture to say since my cancer in 2013 things have been tough. There is nothing like a serious illness to change the dynamic of the family. I think I have been harboring a lot of guilt over my getting ill. I had no idea that my cancer treatments would lead to years of chronic pain and my just being unable to be the mom my teen kids probably needed. Sometimes I was someone I did not recognize. And this all during their neediest years. Forget toddlerhood – teens need us more than they ever let on.

I became an official empty nester in March 2020. Just as Covid began my youngest child went off to the Navy. That left me unmoored. I never thought I would be effected by my empty nest. I have my mother living with us, and we have lots to do around the farm. I have my job- even though it pays little. I have various hobbies (of course on hold in early covid). Anyway I was effected by his leaving. I know it was that he was going to the military and to bootcamp that made it worse. In bootcamp they can’t talk with you much if at all. You feel very disconnected and that is hard in a time when we can text our kids at any moment and hopefully hear back from them. As sure as I was that I would not have a life crisis I found myself crying – missing him, my two other kids, and something else… Could it be my identity?

I was shocked about this. And what followed has been months of my getting used to my kids being gone, the military owning one, the other two in various stages of finding themselves, and me doing some deep personal looking at myself. And up came so much guilt of every failing I had as a parent. And they keep stacking up! My daughter got pissed at me last winter. So pissed she didn’t want to talk to me. For like a couple months. This hurt. And also during that time a long friendship ended. That hurt too. There is nothing like the sting of rejection – especially by your kids-to get you to look into the mirror and try and see how things happened and if you can do better.

Learning how to parent young adults is an art. I will think that I am helping my kid- no I am overstepping. I think I say something constructive – no I hurt their feelings. And since they too are learning how to adult they themselves lack the expertise on how to communicate constructively. It is easier to just not answer the texts. Or to curtly say they need space. SPACE? If anyone should need space it should be ME – the mom! I get to say I need space before you do!

I went from anger to sheer sadness to anger and back during the time my daughter didn’t want to talk with me. I sent emails apologizing. And then I realized at some point this issue of my feeling so awful about her need for space was not about her need for space. It was somewhere inside me. The lost me. The me that feared rejection – this fear goes back to my childhood- dysfunctional family -blah blah- we all have some baggage! Just when you think you have dealt with your issues…and believe me I had spent years trying to deal with issues in many a therapists office- on a soft couch or chair -only to have these feelings of rejection pop-up when my young adult daughter got mad at me. Son of a gun.

Once I got down to the issue(s) I knew I needed to jump back into therapy. First working on how to be the parent an adult kid needs and also to look at these rejection feelings…this lost feeling…finding my purpose…maybe even what color my next vehicle should be…ok thats a joke. But here I am trying to figure out what this next chapter of my life will look at. Deal with the sadness over losing some years to illness and pain and to try to not live in fear… but most of all self loathing over the many many mistakes I have made in my life. For not being the “greatest mom ever”.

My therapist told me she has had no mother come in touting how great a mom they were. Most moms beat themselves up over their parenting at some point. And when your kids are young adults and out making their own choices and trying to become independent persons and inevitably making mistakes- (inhale Anne)-you want to help them to not fall down! And when they do it is so easy to blame ourselves for the fall. And when they tell you they want to figure it out on their own it hurts bc we know so much more than they do, right? So much more that we want to instill all our wisdom on them – and yet they would rather hear from an earthworm than from us…it hurts. Then you ask yourself what did I do wrong that they would rather take the advice from the earthworm over me?

And if you keep hanging on to all that stuff it will just drown you. Well it was drowning me anyway. I needed to get off the drama triangle- its a thing -I can come back to this in another post. I needed to step away. Let them live their lives. Let them fall and not feel blame.

I had a kid who two years ago had to go to a rehab for severe drinking issues. He went to Florida to a rehab and a half way house, then another rehab out-patient, and another half way, and during covid another rehab out-patient for depression. I felt terrible for him and for months I didn’t know how to navigate this world of addiction. I still don’t really. As we went along I did realize that I was enabling my son. Not to drink–no no. The drinking was a shock to me (I always thought I would know if my kids were drinking too much being a child of an alcoholic – turns out that is false). Turns out I was helping him too much in rehab and in his making his way in his half way. So I backed way off. We had to. He needed to figure out things for himself. But crap that was so hard for me. But it was a good thing we did it. I am happy to say he found an apartment this winter with a sober friend. Got it on their own. He is working in a steady job – and prayer after prayer -hopefully staying sober.

Just as these accomplishments are not my accomplishments neither was his drinking my fault. Why would I take credit for either?….but I would easily blame myself for my fails as a mom for his drinking. Logically I know it isn’t my fault but I beat myself up when I found out he had a problem.

The things I accomplish in therapy this time may be better for my kids as I learn to parent adult kids. But for me it will be granting myself forgiveness for real and perceived failures. I hope this will help me open up again creatively. But most importantly – maybe I won’t feel so lost and I can begin to navigate where I fit in. What I want for the next chapter. Anne 3.0 haha!

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.

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

Valentines Day Surgery

Not many people would opt to have surgery on Valentines Day but I did! I had one on my 18th wedding anniversary and had cake when i woke up. So maybe tomorrow some sweet confection will arrive at my bedside providing I can keep it down.

Tomorrow I will have another surgery to attempt to improve the pain I have been having for five years as a result of my breast cancer treatments. This one is actually removing my scar which is damaged by radiation and keeps getting stuck on my chest wall which we think is causing some of my nerve pain.  Part of my back fat(I have plenty of that!) and skin and blood supply will become part of my armpit. Its amazing to read about -Tdap flap -as it is called. Usually it is done on the breast as part of reconstruction -but these flaps are now used all over the body to relieve pain from scars and improve range of motion where applicable.

My new plastic surgeon for this surgery-  Dr. DC – is not new to me really. I have been seeing him for cosmetic things for a few years. And he is aware of my vanity and my pain issue. He just happens to work on a continuous basis with cancer patients. He firsthand has seen the damage radiation can do- he’s seen a lot.

Most of us with breast cancer even early stage like me are given the warnings about side effects from treatments  – but still have the treatments bc it gives you some sense of control during a time when you feel very out of control.  And most of us don’t have too many issues after radiation – some of it is short lived and some shows up years later. We don’t know who will end up in severe pain as I have. But my pain issues have a trajectory and I am beginning to piece things together but It is really of no matter because I can’t go back and change things. Hindsight is 20/20!

Anyway Dr. DC is a great person and a top doc. I will miss Dr. Williams my nerve surgeon as he has been the lead or assist in my last three surgeries.  I am just used to seeing his face in the OR and I trust him. He doesn’t work out of the surgical center I am going to. But he has given his blessing on the approach Dr. DC has in mind – so here we go.

Nobody on this journey wants to have multiple surgeries. I don’t crave going under the knife or the 4-6 weeks recovery.  It is when you live in chronic pain that you realize how much life can be taken away just by a bit of pain – like say in the armpit – and you search for some relief.  Thats what I have been doing.  I don’t write about it all the time anymore because that just gets morose.   When someone starts the cancer fight people tell you or  post – “you got this” , “be a fighter” etc. But after a while people have to go back to their own lives and you are out of focus – and this is how it should be. Now I am sure people think – “Anne is having another surgery?”, “Oh poor thing”.  LOL I get it. I wouldn’t understand either- and I am so glad most people don’t get it because  that probably means they aren’t in terrible pain day on day.

I have been cancer free for five years! That is a huge milestone. And praise God for that. My oncologist pointedly told me not to get too comfortable with this milestone reached – because the cancer can come back..Yes gee thanks Dr. HH – I don’t have a false sense of security but I certainly am trying not to wake each day with a sense of panic – I did that for long enough- so let me have some serenity- stop trying to burst my bubble. I live with freaking chronic pain. Isn’t that enough! Reminder is there daily- thanks!

I can say that I am much better than I was almost 3 years ago when the pain was so bad i was bedridden. For that I am thankful. Dr Williams got me this far. This time around I think I would like to be able to lower my dosage of the nerve pain medication I take.  Which I can only do if I have less pain. The meds leave me with low energy and some other side effects that get tiresome- esp weight gain. My doctors would like to see my arm work better and my range of motion improve. So we will see. Sometimes you just got to do what you just got to do!

I am off to eat some cheesecake. We had an early Valentines Day lunch today and we took the dessert to go. I will also be eating again around 11:30pm because I don’t do well fasting at all- and I especially don’t do well when the surgery is late afternoon as mine is tomorrow afternoon. Thankfully I can have some water 4 hours before surgery. I am sure this is so they won’t tear my veins apart trying to get an IV in! Been there! I am bound to become somewhat hangry by 3pm- maybe they will drug me up prior – or drug themselves! Hangry on me isn’t pretty! Bless those nurses. They will be probably be shoving some food into me when I am in recovery!

Happy VD Day ❤ (Send some good vibes out for me tomorrow if you think of it!)

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In January I went to the National Aquarium in Baltimore, MD. It is a spectacular place. They had the Jelly Fish Exhibit and it was really cool. Don’t these look as if they are lighting up from inside?

 

Sometimes things work out…

All I can say is we just never know where we are going to end up. We have no real control over anything. All we can do is make plans and have hope that things will be okay. For  the last two years  the one thing I had wanted so much to do was to ride my horse again. It wasn’t  a lofty goal really but one that seemed to be unattainable to me not long ago. I didn’t want to give up the hope that one day I would ride again…..but for a while it was iffy…

Two years ago I thought I would never be able to do many activities again let alone ride a horse. My only goal then was trying to find someone to fix the pain I was in. That was a battle unto itself but I did not want to give up- because to do so left me in a very dire situation. One that I could not accept.

June 2016 was a start of an intense pain drama that was caused by breast cancer treatments. The pain had been an issue since my surgery in October of 2013. I had sought help for it with no luck and then it really  reared its ugly head in May 2016 leaving me bedridden for much of the next year. It was hell trying to find the a doctor who would listen to me and not send me away with a shake of the head. They either had no idea what was wrong with me or they thought I was nuts. But finally I found a surgeon who listened.

Today, three surgeries later. I am not that woman stuck all day and night in bed anymore- but I still live in chronic pain. But the levels I am managing- and there may be more surgery in my future. I am left with a disabled arm that I cant use fully and overuse causes pain. Sometimes I don’t know what that overuse is. But I just try to dance with it- sometimes I am in the lead and sometimes the pain is.

I have been hell bent on doing more living- I have always been a physically active person and I missed the mental boost such activity gave me. So many things I could not do. Some because of the limits of my arm and some activities were contra-indicated by my surgeon- one being horse back riding. It was a total bummer to hear this but I temporarily shelved that disappointment and sought another activity .  I bought a kayak with pedals so I could go out in the bay near our beach house. The feeling of independence being on the water propelling myself was intense and important in my recovery. I bought a bike. I began to walk more. I can do limited exercises in the gym.  But I was really missing the one activity I was told not to do—ride my horse.

In the summer of 2017 I was still in enough pain that I was not sure I could ride and on enough drugs I was not sure I should ride. But one day that summer  on a whim Kevin and I tacked up my horse Harley . He accepted the saddle and bridle so well  that I decided to get on and have Kevin lead me around the dry lot. I knew the surgeon had not been keen on my riding but I wanted to be in the saddle. It was just a pony ride but it was the kick I needed – I set a firm goal – I would  ride my horse again. But there were still obstacles to overcome.

I didn’t think it would take another year before I was able to ride again. I had another surgery in November of 2017 to hopefully further reduce my pain. I would say the result have been pretty good. I am off opiates but still need nerve pain medications. . I have pain flares more often than I would like. But I am doing more. The surgery itself – which was fat grafting -had a longer than expected recovery time.

Every time I went to see my nerve surgeon – Dr. Williams- I would tell him that I wanted to ride my horse.  HIs concern was that my arm would be yanked forward if the horse pulled the reins forward suddenly- and this does happen. This can cause more damage to my arm. Also there is the risk of falling off but I think in my case the real concern was with the yanking of my arm. So I wanted to rectify that. How to keep that from happening. There had to be a way . Maybe I would ride one armed. I began to look into that as an option.

Then sometime this past spring my farrier came. I was telling her my plan to try ride again. I explained my concerns of riding with two arms and one getting yanked and I was also becoming nervous about not being strong enough to ride using only one arm (my horse is also neck reined) if my horse pulled suddenly. She told me to get a Daisy Rein. I had no idea what they were but it turns out they are used often for young riders. The rein hooks onto the saddle and also to the bridle and that keep the horse from pulling his head down. Maybe it would work for this old rider!

I saw my surgeon again in July and explained how much I wanted to ride and told him about the rein. He never did give me his blessing but he told me if I did ride I needed to send him photos after I was safely off.  So that to me was an ok to go ahead.

My plan was to move slowly into riding my horse Harley beginning in early August- but life threw us a loop as we suddenly  lost Harleys companion a- our beloved Arab mare -Airy to colic. It was a tough loss on all of us and I again shelved trying to ride. This time more for Harley than for me. I knew it was a stressful time for a horse when there are changes like that adding me riding him after such a long time off might add to the stress – and we wanted another companion for Harley so the focus shifted on that. It took some time but we now have Hank and Yukon here. Hank belongs to our neighbor and Yukon is our Guardian horse form a local rescue.

One  day a few weeks ago  I went out to the barn to feed the horses and our neighbor was bringing Hank back from a ride. I began to feel that envy. That yearning to ride my horse. I really felt it was now or never so I began to get Harley tacked up. It is a bit of a chore for me to get it on while trying to limit the use of my arm but I was able to do it with Kevins help.

Before long I told Kevin I wanted another pony ride. I have to use a step to mount now to get on- it allows me to not use my arm too much.  I got up and settled – feet in stirrups and I was holding both reins because we put the daisy rein on to give that a try too. He tolerated it well and best of all it worked! He couldn’t pull very far so no yanking of my arm.  After a bit, I asked Kevin to let me go and and I took a deep breathe in and let it out and off I went.  I maneuvered Harley around the dry lot for a while..at a walk.. nothing fast. He did very well – and we then called it a day. Best to end on a good note when working with a horse. And I was not ready to ride in the fields yet. But it didn’t take much time for me to be ready! So much for slow starts.

Since that day I have ridden twice out in the fields. The last time – this past Saturday- I was able to tack up on my own. I have learned to yank the saddle out of my locker with one arm and I can toss it up on his back with one arm too.  It was very freeing to be able to do this on my own.

I also can ride with one arm so I switch from using two hands on the reins to one. It turns out my arms are in a “safe” position so I don’t think I will get a pain flare if I am careful – but again it is that dance i mentioned above. That day I was in the lead. Dismounting is a bit of a challenge. I now lower the stirrup iron and dismount on the  right which is the opposite side we proper English riders are taught to do.

Obstacles aside I can’t begin to explain the mental effect being able to ride again gives me. It is something I have needed. It didn’t feel like it had been two years since I had ridden solo. It was as if no time went by at all. I felt right at home in the saddle. I am so lucky to have the horse that I have. Some horses may have been too much for me after not being ridden for so long. Harley is a true champ. We have a bond.

My goal is to ride twice a week for now. I will have to be flexible on this as well as I live my life around things we have planned – social visits, traveling, and doctors visits. So I often curb any physical exercise for a couple days prior to doing these things because I don’t want to have a flare up of pain which may require me to cancel the plans.

But that is life as I live it now. I accept it. You just never know where you will end up…right now for me I ended up back in the saddle. How lucky I am….

….And Dr Williams has been sent a photo..with more to come…

When the kids left…

Kevin and Zach in front of his dorm on move-in day.

When the kids left for other places…boys to college..daughter to Ohio…I thought I would be fine. I didn’t think I would have tears or that empty nest feeling. I was sooooooo wanting the boys out of the house. I cannot lie. I was so done with the mess, the not helping with chores, the living like mole people only emerging for food and then taking food that was earmarked for others in the house. Be gone – be gone!

I will be honest I was not prepared to parent teens. It was harder than I thought it was going to be. Maybe because of the health issues I encountered just as they were entering their teens. One thing parenting will do is teach you a lot about yourself. Many times I felt like i was in over my head. I think we realize as parents that we really don’t know what we are doing. At least thats how I felt much of the time. With three very special kids who were adopted perhaps we did have some more challenges than some and I am very sure less than others. As my teens approached teendom (new word) I realized I wasn’t the cool mom I hoped I would be. But I was always championing for their success. I may not have been their best friend and perhaps sometimes I was their worst enemy but I never stopped trying my best help them succeed.

Motherhood will bring out the very best in us and sometimes the very worst. Over the years I was challenged with learning how to best deal with kids who had their own challenges. I didn’t always like how I behaved and I feel now like I was in a never-ending cycle of trying to improve who I was. I never really got where I wanted to be but I am always a work in progress.  And I loved my kids so much- I wanted to help them as best as I could. Thank God they have the dad they do as we balance each other out well and he picked up the pieces when I wasn’t able to.

I had my health challenges that basically covered  the span of my kids high school years and that effected all of us.  I didn’t want that to happen but it did. I often missed events and I didn’t feel well enough to become too involved in my kids school. I spent over six months mostly in bed. That is hard on your kids – and my were teens by then and not really able to process it all.

Where did the time go?  I was dealing with so much and I feel like I never got anything quite right. I sort of feel I got ripped off. What would it have been like had I not been sick? I will never know and maybe thats some of what I am feeling now. Sadness over what I wanted the years to be and what they really were.

And I miss the kids. As we dropped off kid 1 last week then kid 2 the next day I had this growing heavy feeling in my heart. Why I thought I would not feel this is beyond me. I guess it is because i prided myself on always having my own interests separate from being a mom.. I figured that these interests would still be part of me when the kids left home so I would not be sad because I had my own life. I am realizing this other stuff doesn’t protect your heart from the sadness of this new transition of your kids beginning to navigate on their own and you feeling that loss.

We aren’t a perfect family. We laughed, we cried and we yelled. But this is my family—warts and all  ..and now its changed. I will adjust.

But for now I am in transition. And I am a little lost.

I don’t hear from the boys much so far from college- and I laugh at myself for feeling sad about that bc we hardly ever had real communication when they lived here like moles. But the thing is they were here. And now its empty – and darn it – I have that dreaded empty nest sadness.

Kevin and I have things planned and intend on enjoying our new freedom- and I am excited about that. Thats one good part about the kids leaving. This empty sad feeling is just another part of it. And sadly I have to go through it.

So one in Ohio, two in college – my family has spread it’s wings. I know how blessed I am to have these transitions.

Pretty soon we will have the boys rooms cleaned up, their bathroom neater, and I will learn to cook for three (kevin, mom, and myself)instead of 8 (teen boys eat ALOT.). Soon we will fall into a routine and things will feel normal again. For now I am a little off kilter. My tears are a closer to the surface.

It’s all part of life…and I’ll be ok….

A New Fear

I have been a swimmer for as long as I can remember. One of my earliest memories that I have is of me taking swimming lessons in the baby pool at our swim club. Following that I spent years on swim team and also just playing in the pool. Many times you couldn’t get me out. I’d swim all day.

I had a respect for the water of course but I was never hesitant to be in or on the water. I spent hours riding waves with my dad and friends.

In the last ten years I stopped going into the ocean as much -the fear then was stepping on icky things. I was more wary of the currents and undertow. Probably because I had little Kids and even if they had ease in the water the fear of your child getting pulled out into the deep looms large for most parents I imagine.

I still had a love of pools if they weren’t too crowded (that’s a germ thing-yes I got more leery of the humanity in a pool as I’ve aged and well it grosses me out if there are tons of people swimming in a small enclosed body I water no matter how much chlorine is dumped in).

I love the water and I really love being near or in the water. We have a cottage just steps from a Bay. But I now have a fear of deeper water.

I was out on the bay the other day on my kayak. Kevin was along on his kayak. It was a chilly day. About 55 degrees. I’m a new kayaker. I got a boat with pedals as I can’t use my arm to paddle because Of my issues with nerve damage and pain. I was thrilled when I got the kayak. I motored around last summer and if the bay was a little choppy I found myself feeling somewhat nervous. I am no longer sure of myself as a swimmer. I can’t really swim which because of my limited use of my arms but it really didn’t seem to be a huge issue last summer because the Bay isn’t really deep and the water was warm. But the other day the water was cold and seemed deeper and it was choppy. I had wetsuit bottoms on but just a jacket and hat on. And I was wearing boots. Wellington’s. Maybe not the best choice.

While on the water as I was traversing some choppy conditions I felt myself panicking. A full out freak out was just on the edge of my brain. I kept picturing myself falling off the kayak. Or it tipping. Me sinking as my boots filled and my coat became heavy. I feel the fear now as I write this.

I had a flotation device but not on me – it was secured on the back of the kayak. I tried to reach behind me to grab but my limited range of motion and the rocking of the kayak made it impossible for me to reach it. That was a rookie mistake not to have put it in.

I told my husband I was feeling very scared. Kevin told me to take deep breaths and as I did I felt myself regain control of my thoughts. The choppy water wasn’t really that bad. The boat wasn’t really in severe danger of tipping. I tried to enjoy what I was doing and concentrate on the beauty. I’ve lost the ability of being able to do a number of things since my nerve damage became so bad and kayaking gave me the sense of freedom that I’d been craving. I didn’t want to lose that to fear.

We ended the journey on a good note. I was calmer but I had a wake up call. I’ve definitely lost my confidence that I could save myself if I got into trouble. I’ve never felt this way before. It made me mad. Just one more thing that had been taken away because of my limitation and because my body is weaker because of being mostly bedridden this last year.

But anger won’t solve anything. I’m a problem solver by nature. So moving forward I need to figure out how I can feel less fearful in and on the water.

Over last summer when I first went out to sit on the beach at the ocean I walked up to the waters edge and watched the waves roll in and I realized even then that I was very leery about even attempting to wade in to my knees and not for fear of stepping on something icky –it was fear I couldn’t even get up if I fell into the shallow but wavy water. As a result of this I decided to head to the neighborhood pool and allow myself to ease into a better comfort with the water. During the first visit to the pool I ended up in the deep end with a swim noodle and I was able to ditch that after a time and then proceeded to tread the water and I practiced floating. It isn’t easy to tread water with one arm but it’s doable. But this pool visit gave me confidence to venture into the ocean at least up to my knees or hips. And subsequent visits continued to help my confidence. I also worked on leg strength in the gym when I felt ok.

So why the panic the other day?

Well I’ve had another surgery since summer. Just four weeks ago. I haven’t been allowed to do much and maybe kayaking wasn’t a good idea. Maybe I felt vulnerable. I’m definitely weaker. It doesn’t take long to weaken when your on restrictions to not work out or do too much physically. And I think the cold water scared me. Cold water can be paralyzing. But most of all my biggest obstacle that day was my own mind getting the best of me.

I am not an “I can’t” person but over the last few years I’ve said that more times than I care to admit. I want to be strong again! Mind and body. It’s so frustrating to try to get stronger only to be met with Pain as a result. But I’m going to try to figure this out. I’m not likely to kayak anymore this year. It’s getting too cold. I plan to be in some type of workout program. We have a gym in our barn so I have no excuse to at least try. And somehow I have to get into a pool. We have some indoor pools nearby. (Maybe they won’t be too crowded!).

I just want to feel strong again. I still deal with pain and that’s limiting -I have had three surgeries in the last year to try to get rid of it and it’s much better -but there may always be some pain I have to figure this out despite that. It can be done. I know it.

Next spring when I break out the kayak again I want to feel I could cross the bay (it’s a mile). I may not ever try it but I want to feel like I could. I want to no be afraid. I want to be strong.

More surgery / and my vanity

I’m sitting here this morning in bed. I’m having a bad pain day. The nerve pain is hot across my right side and chest and the there is that tingling tickling burning sensation that travels across to my throat. I cough. Nobody knows exactly why. They know I have a lot of scarring that has adhered to my chest under my arm and I have radiation damage as well. They feel my sensations come because of this issue. All these things that are very hard to fix.

It’s funny how such a little area can make a person disabled when it flares up. It’s very frustrating. I’m so much better than I was last year but I’m still plagued with pain and it’s too much of a focus of my day and it controls my life too much. So on Wednesday next week two surgeons are going to try to ease some of the pain.

My wonderful nerve surgeon and a plastic surgeon are going to try fat grafting. This procedure requires liposuction of an area on the body. With me it will be my stomach- and my love handles 🙂 -see the smiley? I’m all for losing some fat since I’ve put on weight from the medicine I take for nerve pain.

Anyway they spin that fat so they get the good stuff and then they inject in my areas of scarring and pain. The idea is twofold. The scar will be lifted off the chest wall which may relieve some of the pain . Think of having gum stuck in you pants pocket and the two sides are stuck together. Well that is my issue on the side of my body where I had the node biopsy. So your skin is all one piece and when one part is stuck onto your chest wall it throws everything off. My neck gets tight because the scar is so tight it pulls the skin and muscle all the way to my neck. I get rib and breast aches and muscle tightness in my back. All from this small area of my body being off kilter! So the fat will create cushioning under the scar.

The other thing that is looking hopeful with fat grafting is that the stem cells in the fat can help regenerate the radiation damaged tissues. This has been studied over the last few years and the results have been very promising.

So that’s where I am. My third surgery in the last year. All in hopes that I will get to an acceptable pain level. Pain free is likely not going to happen and that’s been hard for me to accept. But I have come to terms with it to a degree but I continue to look for ways to help it improve.

Thankfully I have an amazing surgeon who wants to help. He has brought in a trusted plastic surgeon to do the grafting as he assists. I offer myself up to their expertise and they are pretty optimistic that I’ll get some noticeable relief. So I’m praying this is so and crossing my fingers and toes for an extra boost of hope. If I get some improvement a second grafting can be performed. (More lipo!)

I did ask the plastic surgeon if he would put the extra fat in my face. He said he would during my exam but later thought better of it. Maybe it’s just too much for one session! Maybe he had been joining. I Just thought getting a few wrinkles filled might be an extra bonus!

Since my cancer and subsequent pain issues and because I have three teens who like seeing my hair gray – I have aged a lot in the last few years. So I have had some filler done in my face.

I can hear people gasping. But hello lots of us are getting Botox (I’m not a candidate in my forehead because I have too heavy a brow), fillers and nips and tucks. I don’t want to age gracefully if it is going to go this fast. It is not graceful. So I’m just trying to slow it down -and crap after what I’ve been through I deserve to do things that help me feel good about me.

I’m not one of the confident woman who can accept their body changes and aging. I wish I were. I’ve gained weight and I’m out of shape because I’m limited in the gym. I do walk a lot. But I am not feeling good about me. I’m used to being thinner and more muscular than soft.

I will say that some filler I have had I’ve liked and some I haven’t and thankfully I did not get the kind that lasts lots of years. I don’t like my cheeks probably because I’ve gained weight since I have had my cheeks done. And I feel too cheeky! But I like the filler in my smile lines and in a couple other facial lines. I’m scared to get the filler under my eyes. Which is a problem area for me so I invest in lots of concealer.

I share this because I’m not afraid to show my vanity which come from vulnerability. I’ve been tossed around the last four years. It’s been super hard . Sometimes I wonder why I am still so vain and not just thankful for what I have. The fact is I’m both. I’m thankful and vain. And truly it’s each persons choice what they choose to do or don’t do with their bodies. So I own it. I’m vain but I tell myself that’s ok because I’ve been through hell.

So when the surgeon was thinking he might put some fat in my face I felt excited and nervous. It’s like maybe I could have pain reduction and a cosmetic boost all in one. I figure he changed his mind for a good reason. Probably wants to stick to the real issue at hand. My pain. Which is just fine with me.

In the long run if I had to prioritize what is most important – getting rid of pain would rank #1. Obviously. So heres to surgery number 3 for my post cancer treatment pain – I’m praying for good pain relief . (And if he has some extra fat for a wrinkle or two maybe he would surprise me).

Oh and there is the liposuction 😉

Hey whatever it takes to keep the spirits up right?

Finding new roads or currents 

The thought I might never ride a horse again had crossed my mind from time to time this last year. I am pretty sure my own horses don’t really mind that-but it has been hard for me to concede to that fact that my riding days are over. So I’m not really going there yet. But right now I am not supposed to ride a horse. Not only my horse – any horse – no can ride.  This has to do with the fact I have had two major nerve surgeries on my arm and chest wall and a fall off a horse would definitely not be good for me.  

Had I known my riding days were limited I would have ridden more when I had the chance.  There really isn’t any sense in those regrets but that is how I feel much of the time. 

I am a very active person or I was. Since laying in bed with chronic pain for many months I am basically starting all over trying to get myself back into shape. It’s not easy when you have physical limitations and chronic pain. 

I have a whole list of can’t do’s:

  • Can’t ride a horse. 
  • Can’t lift weights with upper body. 
  • Can’t bear weight on my right side using arm. 
  • Can’t paddle anything. Like a kayak or stand-up paddle board. 
  • And you get my drift. 

So I’ve been trying to figure out what I can physically do because focusing on what I can’t do is just depressing and not productive.  And there are many more things I can do than can’t. 

So far I can

  • Walk. 
  • Ride a bike 
  • Ride in the front seat of car again. 
  • Drive a car
  • I can lift weights with my lower body 
  • I can feed animals 
  • I can brush animals with my good arm. 
  • You get the picture. 

The fact I want to ride a horse again is a good sign anyway. The fact that I can’t -for now – is just a hinderance. 

With our traveling back and forth to our beach cottage I’ve been trying to figure out what I could do for activity on the water. Kevin and the kids got stand up paddleboards and they are so cool! I can sit on one while Kevin paddles and that’s fun. We got a two man inflatable kayak and that’s fun too – but I have been just a passenger bc I can’t paddle it. Passengering is ok. It’s fun sometimes – but I don’t want to be the passenger all the time. 

I thought there must be a water device that has pedals.  So I looked up kayaks with pedals and they exist! I found out fisherman use them as it makes it easier to maneuver while fishing.  

So we found a kayak outfitter in Lewes ,DE about 40 minutes from our cottage. We worked with one of the salesmen and he gave us the lowdown on different types of pedal kayaks. We selected a Hobie kayak. The price was fairly high (I may have gasped) but I really wanted independence. I wanted an “I Can” that I could do with my family on the water and I wanted something that gave me independence like the bike did. The price was worth it. 

The feeling of being on the water is amazing. I love the serenity and the exercise. 

I love the freedom and independence. 

I’m glad I found another “I can”

——

Link to the paddle sport shop Facebook page where they posted our picture. 

Here’s some info about the Hobie Mirage kayak I got.