Impossible...

The heat index today was 110 degrees!  This is our third heat wave in a month and summer only officially began last week.  This is my eighth summer in Fort Wayne and the first one that has been so incredibly hot.  We've been under a heat warning and air quality warning since yesterday noon and it will be stinkin' hot tomorrow, too.  If the forecast holds well, we will have two days of respite and then another heat wave.  It has been difficult to endure the heat, which is both debilitating and exacerbates my symptoms.

What is worse is how many folk tell me that I'll get used to the heat.  It isn't about acclimating.  It is about a malfunction in my body having a reaction to the heat that makes me ill.  No amount of acclimation or "exposure therapy" is going to make that better.  In fact, it will just make me worse.

Likewise, when folk tell me that I can just have my house warmer if I wanted.  I have had the thermostat set to 68 degrees in the summer for years, but I did move it to 70 degrees.  To me, that is a huge concession for those visitors who are cold.  To me, two degrees is like 10.  But, to be honest, I am trying to endure 70 degrees all the time to save money.  No matter how much I crunch the numbers, I simply do not have enough money for all my expenses.

I did spend hours and hours going over my non-fixed medical expenses from January to June to attempt to come up with a fixed number monthly.  What I need is more than my funds will allow.  So, I earmarked $250, the most I could reasonably carve out.  Before now, I had been paying my medical expenses in a slapdash fashion ... or maybe as a neglected step-child fashion.  But starting with June, since I could rework the month, my medical expenses will be a first-pay as opposed to a random-hoping-money-will-appear fashion.  Of course that means I only have $225 left.  With $125 earmarked for groceries and household items, such as paper towels, that leaves me a mere $100 to pay for everything else.  One tank of gas and the month becomes rather dire in the financial department.  SIGH.

As far as the $250 goes, if I do not spend all of it on medical, then I will sweep the leftovers into the medical savings account.  Likewise, if I spent over $250, then I will pay myself back out of the savings account.

I hope I can keep up this way, because I really do not need to be putting off my medial expenses.  I need to be planning for them from the get go.  I am sick after all.  And I need to find a way to live (and be ill) on the amount I receive.  After all, the financial situation I find myself in is not going to change.

My financial situation is near impossible, as is living with the heat.  I am failing at both and see little help in either department.  SIGH.

Warm your cockles...

I could hardly imagine you haven't at least heard about it, but I hope that, by now, you've watched Paul McCartney's Carpool Karaoke with James Corden.  I've never been good at embedding things, so I hope this works for you.  Watch it.  Even if you don't care for his music all that much.  Or him.

It will warm the cockles of your heart and teach you a few things.





I cannot say that I have heard any of Paul's music, though I, of course, know his work with the Beatles.  So, I was not particularly interested in watching this, only I heard the hype.  I thought, why not?

I've since watched it five more times.  Maybe more.  I'm not going to count anymore.  It is such an uplifting and interesting encounter that thoroughly surprised me.

I found this article (and, yes, I am going to cut and paste it again here) by a Jesuit Priest that beautifully elucidates why it is that I like the video so much ... why I am awed by it, truth be told ... because it teaches us about humility, vocation, human connection, humor, and grace.  I am so very thankful that he wrote this so that I could share its insight about such a lovely encounter.

Grace-filled is what he called it.  It certainly was that.  And grace is always, always uplifting.

[Have you watched the video yet??]



James Martin, S.J. | June 26, 2018
The grace-filled encounter between Paul McCartney and James Corden

I don’t usually comment on too many “non-religious” or “non-spiritual” things (since I try to stick with what I know), but I thought I would make an exception. A few days ago, I watched Sir Paul McCartney’s “Carpool Karaoke” with the television host James Corden video, as did 16 million (and counting) other people, and found it deeply moving.

Why? Not just because I’ve been a Beatles fan since the 1960s (and marvel that my 13-year-old nephew is, too: he saw Ringo Starr in concert just a few weeks back). But because this extraordinary episode has much to teach us.

First, it teaches us about humility. Of course, Paul McCartney has had 50 years of practice in dealing with fans from all over the world, and, of course, he knew that he was being filmed at the time, but notice how kind, patient and generous he is with everyone he meets in his hometown of Liverpool. (“I’m comin’ in your shop, Luv!” “Tell him I said hi!”) Notice a myriad other small instances of humility: how, for example, he confesses that he thought the Beatles’s songs wouldn't last for more than 10 years. To my mind, it’s hard to “fake” humility. Sir Paul is clearly someone who doesn’t need to prove anything. It’s refreshing to see.

Second, it teaches us about vocation. Clearly, Paul McCartney has a vocation and one that he has lived out well: as a singer and songwriter. That’s a bit of an understatement, isn’t it? But anyone with even a passing knowledge of the Beatles knows something about their hardscrabble beginnings (cf: the Cavern Club), how diligently and tirelessly they worked, and how each tried their best to live out what they felt they were called to do—even at the end, when the band broke up. (Martin Scorsese’s wonderful film on George Harrison, “Living in the Material World,” shows this as well.) It’s a joy to see someone so fully living out his or her vocation and continuing to live it out so completely. (My cousin told me that Paul McCartney astonished her in concert, just a few years ago, in his 70s, with his vitality and range.) Seeing someone live out their vocation so fully is like seeing a flower finally bloom.

Third, it teaches us about human connection. The moment when Sir Paul shares a personal story about the origins of the song “Let It Be” is followed by Corden sharing something equally as personal about what the song meant to him as a child, which is followed up Paul’s simple spiritual encouragement to Corden. To me, that particular moment is a marvelously real example of what Jesuits call “faith sharing.”

Fourth, it teaches us about humor. They have a lot of fun, these two, and so do those around them. Sir Paul has a healthy sense of humor about himself and his “mates,” which has always been one of the most appealing things about the Beatles. (See the superb documentary about their longtime fan-club president, “Good Ol Freda,” for more on the enormous fun that “the lads” had in their heyday.) The same kind of larky attitude is evident here. Life can be fun. Why not have a laugh from time to time?

Finally, it teaches us about grace. There are moments of grace all throughout this lovely video: the expression on the face of the owner of the eponymous barber shop on Penny Lane when Paul surprises her; Paul showing James how he used to play the guitar sitting on the loo; and the look on the face of the middle-aged woman in the pub when Paul starts to sing (you know that she must have been a big fan of the Fab Four back in the day).

So, in the end, this segment is indeed religious, in its original meaning (re-ligio: to tie back). It reveals how one person’s living out of his or her vocation can tie so many people together. And it is deeply spiritual as well, in that it shows us how the spirit can work in such beautiful, touching and unexpected ways. In such grace-filled ways.

Grace is all you need, to paraphrase John Lennon.

And Paul McCartney.


Amen.

A Myrtle tool...

Shortly before my mother's visit, I came across this article on how Complex PTSD impacts survivors.  It was as if someone had crawled inside my head and copied down the battle of my life, all the things that I used to be ever so much better at keeping hidden.  Trauma broke me, broke my ability to pretend and so much of the below came spilling out.

I posted this article on Facebook, because I wanted my friends to read it.  I think that it is a great tool, a perfect tool really, to talk about PTSD and its impact on my life, my faith, and my relationships.  But only one person commented on it.  So, I copied the article in to a word document and cut out all of the ads and images to make it easier to read and emailed it to my friends.  I still yearn to talk about it.  But that has not happened with them.

I took it to my therapist, who was almost dumbfounded at such a great resource, how comprehensive it is as an overview and who immediately saw its potential with some of her other clients and her other therapists.  She made copies for both and started using it.  What I asked her was if we could use it as a blue print to start talking about PTSD, since most of what we've talked about for 14 months has been the battle (and trauma) of being chronically ill.

My realtor came to visit and, almost on impulse, I gave her the copy I had in my purse to use during my therapy visits.  To my surprise, she read it that night and texted me the next day offering to talk with me about the article.  For one, she said she saw me all throughout it and it helped me to understand her better.  But she also has a dear one who has PTSD and the article helped her to understand her.  She was thankful that I shared, for our relationship and for that with her loved one.

And then I also sent it to the financial advisor who helped me back when I was first seeking disability and with whom I have recently got back in touch.  I reached out to her, a veritable stranger, on a terribly dark day and God has blessed me through her ever since.  Oft in most surprising ways.

One of which is that she read the article.  Really read it.  So much so that I can tell her "the problem is No. 9" and she knows what I mean and we can talk about looking for a rescuer and how that has hurt me.  She and my realtor better understand my spiritual agony give No. 1 and No. 6 (and even No. 9 ... because of the guilt).  

With my entire being, I long for my two closest friends and my sister to read it and to talk with me about it.  To let it become another Myrtle tool in our relationships.  And I desperately wish that I had a pastor who knew me would read it and talk with me about belief and salvation.

I could post the link here, but I thought I would make it really, really, really easy to read by including the text, with the link at the end.

I read the article and I felt known.

I read the article and I felt despair thinking about my life.

I read the article and I felt the shallow, burning cuts of hope.



AUGUST 17, 2017

12 Life-Impacting Symptoms Complex PTSD Survivors Endure


Complex trauma is ongoing or repeated interpersonal trauma, where the victim is traumatized in captivity, and where there is no perceived way to escape. Ongoing child abuse is captivity abuse because the child cannot escape. Domestic violence is another example. Forced prostitution/sex trafficking is another.

Complex PTSD is a proposed disorder which is different to post-traumatic stress disorder. Many of the issues and symptoms endured by complex trauma survivors are outside of the list of symptoms within the (uncomplicated) PTSD diagnostic criterion. Complex PTSD does acknowledge and validate these added symptoms.

The impact of complex trauma is very different to a one time or short-lived trauma. The effect of repeated/ongoing trauma—caused by people—changes the brain, and also changes the survivor at a core level. It changes the way survivors view the world, other people and themselves in profound ways.

The following are some of the symptoms and impact most felt by complex trauma survivors.


1. Deep Fear Of Trust
People who endure ongoing abuse, particularly from significant people in their lives, develop an intense and understandable fear of trusting people. If the abuse was parents or caregivers, this intensifies. Ongoing trauma wires the brain for fear and distrust. It becomes the way the brain copes with any further potential abuse. Complex trauma survivors often find trusting people very difficult, and it takes little for any trust built to be destroyed. The brain senses issues and this overwhelms the already severely-traumatized brain. This fear of trust is extremely impactful on a survivor’s life. Trust can be learned with support and an understanding of trusting people slowly and carefully.


2. Terminal Aloneness
This is a phrase I used to describe to my counselor—the terribly painful aloneness I have always felt as a complex trauma survivor. Survivors often feel so little connection and trust with people, they remain in a terrible state of aloneness, even when surrounded by people. I described it once as having a glass wall between myself and other people. I can see them, but I cannot connect with them.

Another issue that increases this aloneness is feeling different to other people. Feeling damaged, broken and unable to be like other people can haunt a survivor, increasing the loneliness.


3. Emotion Regulation
Intense emotions are common with complex trauma survivors. It is understandable that ongoing abuse can cause many different and intense emotions. This is normal for complex trauma survivors.

Learning to manage and regulate emotions is vital in being able to manage all the other symptoms.


4. Emotional Flashbacks
Flashbacks are something all PTSD survivors can deal with, and there are three types:

Visual Flashbacks: where your mind is triggered and transported back to the trauma, and you feel as though you are reliving it.

Somatic Flashbacks: where the survivor feels sensations, pain and discomfort in areas of the body, affected by the trauma. This pain/sensations cannot be explained by any other health issues, and are triggered by something that creates the body to “feel” the trauma again.

Emotional Flashbacks: the least known and understood, and yet the type complex trauma survivors can experience the most. These are where emotions from the past are triggered. Often the survivor does not understand these intense emotions are flashbacks, and it appears the survivor is being irrationally emotional. When I learned about emotional flashbacks, it was a huge lightbulb moment of finally understanding why I have intense emotions, when they do not reflect the issue occurring now, but are in fact emotions felt during the trauma, being triggered. But, there is no visual of the trauma – as with visual flashbacks. So, it takes a lot of work to start to understand when experiencing an emotional flashback.


5. Hypervigilance About People
Most people with PTSD have hypervigilance, where the person scans the environment for potential risks and likes to have their back to the wall.

But complex trauma survivors often have a deep subconscious need to “work people out.” Since childhood, I have been aware of people’s non-verbal cues; their body language, their tone of voice, their facial expressions. I also subconsciously learn people’s habits and store away what they say. Then if anything occurs that contradicts any of this, it will immediately flag as something potentially dangerous.

This can be exhausting. And it can create a deep skillset of discernment about people. The aim of healing fear-based hyper-vigilance is turning it into non-fear-based discernment.


6. Loss Of Faith
Complex trauma survivors often endure a loss of faith. This can be about people, about the world being good, about religion, and a loss of faith about self.

Complex trauma survivors often view the world as dangerous and people as all potentially abusive, which is understandable when having endured ongoing severe abuse.

Many complex trauma survivors walk away from their religious beliefs. For example, to believe in a good and loving God who allows suffering and heinous abuse to occur can feel like the ultimate betrayal. This is something needing considerable compassion.


7. Profoundly Hurt Inner Child
Childhood complex trauma survivors, often have a very hurt inner child that continues on to affect the survivor in adulthood. When a child’s emotional needs are not met and a child is repeatedly hurt and abused, this deeply and profoundly affects the child’s development. A survivor will often continue on subconsciously wanting those unmet childhood needs in adulthood. Looking for safety, protection, being cherished and loved can often be normal unmet needs in childhood, and the survivor searches for these in other adults. This can be where survivors search for mother and father figures. Transference issues in counseling can occur and this is normal for childhood abuse survivors.

Inner child healing can be healing for childhood abuse survivors. It is where the survivor begins to meet the needs of their hurt and wounded child, themselves.


8. Helplessness and Toxic Shame
Due to enduring ongoing or repeated abuse, the survivor can develop a sense of hopelessness—that nothing will ever be OK. They can feel so profoundly damaged, they see no hope for anything to get better. When faced with long periods of abuse, it does feel like there is no hope of anything changing. And even when the abuse or trauma stops, the survivor can continue on having these deep core level beliefs of hopelessness. This is intensified by the terribly life-impacting symptoms of complex PTSD that keep the survivor stuck with the trauma, with little hope of this easing.

Toxic shame is a common issue survivors of complex trauma endure. Often the perpetrators of the abuse make the survivor feel they deserved it, or they were the reason for it. Often survivors are made to feel they don’t deserve to be treated any better.

Sexual abuse can create a whole added layer of toxic shame, which requires very specific and compassionate therapy, if this is accessible. Often, sexual abuse survivors who are repeatedly enduring this heinous abuse can develop feelings of being dirty, damaged and disgusting when their bodies are violated in this way.


9. Repeated Search For A Rescuer
Subconsciously looking for someone to rescue them is something many survivors understandably think about during the ongoing trauma and this can continue on after the trauma has ceased. The survivor can feel helpless and yearn for someone to come and rescue them from the pain they feel and want them to make their lives better. This sadly often leads to the survivor seeking out the wrong types of people and being re-traumatized repeatedly.


10. Dissociation
When enduring ongoing abuse, the brain can utilize dissociation as a coping method. This can be from daydreaming to more life-impacting forms of dissociation such as dissociative identity disorder (DID). This is particularly experienced by child abuse survivors, who are emotionally unable to cope with trauma in the same way an adult can.


11. Persistent Sadness and Being Suicidal
Complex trauma survivors often experience ongoing states of sadness and severe depression. Mood disorders are often co-morbid with complex PTSD.

Complex trauma survivors are high risk for suicidal thoughts, suicide ideation and being actively suicidal. Suicide ideation can become a way of coping, where the survivor feels like they have a way to end the severe pain if it becomes any worse. Often the deep emotional pain survivors feel, can feel unbearable. This is when survivors are at risk of developing suicidal thoughts.


12. Muscle Armoring
Many complex trauma survivors, who have experienced ongoing abuse, develop body hyper-vigilance. This is where the body is continually tensed, as though the body is “braced” for potential trauma. This leads to pain issues as the muscles are being overworked. Chronic pain and other issues related such as chronic fatigue and fibromyalgia can result. Massage, guided muscle relaxation and other ways to manage this can help.

All of these issues are very normal for complex trauma survivors. Enduring complex trauma is not a normal life experience, and therefore the consequences it creates are different, yet very normal for what they have experienced and endured.

Not every survivor will endure all these, and there are other symptoms that can be endured. I always suggest trauma-informed counseling if that is accessible. There are medications available to help with symptoms such as anxiety and depression.

There are also many self-help strategies to manage the symptoms and help heal.

Lastly, I advise that empathy, gentleness and compassion are required for complex trauma survivors.

~Lilly Hope Lucario (Severe and multiple complex trauma survivor).


Source: https://themighty.com/2017/08/life-impacting-symptoms-of-complex-post-traumatic-stress-disorder-ptsd/

More pain, new pain...

My mother came to visit June 10th through the 15th, having not been here for 18 months.  I worked very hard to give her a peaceful and pleasant visit, filled with things she enjoyed.  Sadly, we did not play a single hand of Skipbo, but otherwise the visit went as I desired for her.  Well, she did say that I need to serve her more of her beloved Santa Fe Soup on her next visit.  I can do that.  Too bad that I could not send her home on the plane with a few jars.

Alas, though, I have spent the bulk of the time since she left sleeping and resting and doing a little bit here and there and getting all exhausted all over again.  I don't mind.  I mean, I wish that I were better at just being sick around others, but I am not sure that that many folk want to be around me whilst I am sick.  And I am lonely.  So, it is simply better to pretend to be well.

SIGH.

A little while ago, not even two months, I think, my left shoulder had a twinge.  I stopped doing my free weights immediately and thought it would blow over.  Then, just before my mother came, it started hurting.  During her visit, it got so bad I thought I would just about die from it.  It sounds like an exaggeration and I know that it could always be worse.  But ... oh my!  I was in such despair.

I started putting the topical NSAID (like ibuprofen) from the plantar fasciitis in my left foot that just won't go away.  My foot is despairing.  My shoulder is despairing.  The medication is helping.  Although, tonight, I wept my tearless tears because it struck me that the gel is like my Celebrex.  It doesn't heal anything.  It is just a pain medication.  Another monthly medication to try and fit into such a tiny pool of money upon which I am trying to live.

Okay.  Not tiny.  Only tiny if you are chronically ill.

The x-ray shows arthritis has developed there.  So quickly is surprising ... at least the pain escalating so quickly.  What I need next to determine course of treatment is an MRI.  Yes, well, that is not happening, is it?  SIGH.  Right now, the topical pain treatment is my best option.

It just grieves me that so much of my life has to do with pain, dealing with it, figuring out how to treat it with the limited options available to me and with the even more limited funds available to me. I cannot just ignore the pain, but I want to do so.  I want to declare from here on out I will just fall silent.  I suppose I could do that.  But I would also want to truly be that hermit, the one who simply doesn't seen anyone.

Bones breaking.  That's what it feels like.  It hurts when I move my shoulder.  So much so that at times I gasp.  But it it almost worse when I am still.  And it feels as if the bone in my arm near my shoulder is breaking.  It aches just like when I've had broken bones in the past.  The aching gets to me.  Deeply.

So, I've spent the past two weeks mostly sleeping and resting and trying to recover from a visit from my mother.  And I've spent the past three weeks trying to swallow life with constant pain in my left shoulder.

More pain.
New pain.

Giving thanks...

I don't know where I would be without Immitrex (sumatriptan) and Toradol (ketoralac).  There simply are no sufficient words for the pain of a migraine.  I often think back to back when I was caught in the maelstrom of chronic migraines.  Such misery.  I certainly could not cope with that now on top of everything else.

Climbing my way out of that black hole was one thing that I have done for myself that was truly good.  I read about the whys and wherefores of the chronic migraine cycle and began to work on what I could do myself, aside from finding the right medication for me.  What I can do is stop the stimuli whilst battling the migraine (turn off lights and sounds) and work on relaxing after the pain has ceased (my Sunbeam neck and shoulders heating pad being my big gun in that regard).

My original GP when I moved here helped me to figure out that I needed something immediate to help with the intense pain and gave me Toradol.  And she helped me to determine that I need a second dose of Immitrex with my migraines.  I take them two hours apart, so getting to that second hour is the hardest part, hard to hang on, hard to not fall into deep despair.  Somewhere into the third hour, the pain begins to ease and hope seems a possibility.  Hope that the pain might eventually come to an end.

Then, I could have migraines as much as half the month.  Now, I am closer to 2-3 a month.  That is a manageable number, though having none would be preferable.   What would be best would be: none. In any case, what makes them manageable is that I escaped the cycle of bounce-back and chronic migraines.

Thank you, Jesus!

When I was trying to figure out what meds I needed, the neurologist I saw was more interested in trying new ones rather than ensuring that what I was taking was helping me as best it can.  One of the new medications landed me in the hospital!  Now, I know there was a conflict with one of my other medications.  But I also know that it is oft important to look at what you are taking and how you are taking it and evaluate if an adjustment is needed before abandoning it altogether.

Think of the pilocarpine, my new saliva medication.  It is taking me a long, long while trying to adjust to the medication.  Truly, as I have told anyone and everyone, it is "kicking my butt."  However, with patience, I can now take two full pills, twice a day.  That is half the normal dose.  And yet half means that I have more saliva in my mouth than I've had for years.

It is so very weird!

I have struggled and struggled and struggled to take the medication, increasing my dose by a quarter pill at a time.  So often, I think why are you doing this to yourself?  But this is why.  Weirdness!  Saliva!

I am taking a break, though, for the interim.  I mean, I am pausing at the half dose before I start the long, long task of doubling what I am taking now.   Still, that's quite an accomplishment, if you ask me.

I do wonder ... how long until having saliva in my mouth is not longer weird?

Meanwhile, I am giving thanks for two other medications.  I am giving thanks because I have been battling a terrible migraine, brought on by the utter and absolute wretchedness that follows missing doses of gabapentin and baclofen.

Last night, I missed my midnight meds, which has doses of both.  It was the third dose of baclofen that I have missed this week already!  SIGH.  Anyway, there I was, growing more and more ill and then, in the wee hours of the morning, I realized that I had missed last night's meds.  That's why I'm so ill!  I'm in withdrawal! 

Sadly, it takes at least two doses before I start to feel better.  Being in withdrawal and battling a migraine is an awful combination of wretchedness.  And it is a terrible place to be, waiting on medications to start working for different reasons and being ill for different reasons, all the while struggling to get through moment by moment, being crushed by chronic illness despair.

So, I spent much of the day working on giving thanks for medications that I have, for the GP who was persistent in helping me, for the Internet for teaching me about bounce-back and chronic migraine cycles, and for friends who remain even when so very much of my life is focused on being ill.

Catching up...

[I started writing this last Thursday and have been struggling to finish it.  SIGH.]

Yesterday, I felt sucker-punched by my blood test results. My kidney function was the worst that it has been thus far ... not the temporarily “better” it was supposed to be having cut my arthritis pain medication in half in order to bump up my function so that I could have the contrast I need for my MRI.

Now ... crap kidneys and the very real possibility of not getting to have the MRI that I have been waiting for since December. The MRI that should help determine the reason for the constant shocking in my hands. If I miss this appointment, it will take between four and six weeks until I will be able to get another appointment.

That is bad enough, but the reality is that my kidneys are not tolerating the high dose steroid treatment that I am on right now and steroid treatment is par for the course with Sjögren’s! I need to be able to tolerate steroids. Plus, I still have two weeks remaining on my current course. So, the kidney function results were both an immediate blow and a long-term concern.

There.  There I stopped because I my doctor walked into the exam room and we started my appointment.  My sucker-punch got worse.  Much worse.  

You see, the radiologist who has been dragging out the approval for my MRI decided, after FOUR WEEKS, of having an appointment on the books, that he was not going to do the MRI.  He wants me to have a spinal tap first, to check for banding.  It is an MS test I already had ... it was part of my diagnosis in 1994.  It is also not something normally done before an MRI of the brain.

I just ... I was crushed.  My GP said she would call the neurologist and try to talk with her about talking with the radiologist.  But I knew ... I knew this was the end of the line for me.  I just knew it.  Sure enough, this morning, my neurologist called to talk about the problem and to say that my cardiologist was out of town.  I spoke with her about his approval and she went to call the radiologist.  Shortly thereafter, she called me back to say that the radiologist was refusing to do the MRI because of the risk of DEATH.

I'd laugh if it wasn't so absurd.

I mean, my pacemaker has been on the market for years and has been MRI-ed safely in Europe for years.  No one died.  No one is going to die.  I am not going to die.  There is just no risk of death.  Maybe ... just maybe ... there could be a glitch in its programming, but that is why I'd have a pacemaker tech on site.  But Biotronik would not be the bazillion dollar company it is if there were even glitches on its pro-MRI series of pacemakers.  THERE IS NO RISK OF DEATH OR OTHERWISE.

ARGH!!!!!!!!!!

My neurologist is going to send the order for the MRI over to Lutheran Hospital to see if a different radiologist might see the matter more clearly.

Here's the problem in a nutshell:  When I received my MRI, there was no such thing as an approved devices list.  But then the FDA decided it wanted to create one.  Not content to rely on YEARS of proven data, the FDA wants its own data.  So, sadly, my device is not yet on the list.  My leads are.  The wires going from the pacemaker into my heart muscle are approved.  Just. Not. The. Pacemaker.

Back in January, my cardiologist told me that all he had to do was to make a personal guarantee for the safety of the device and I could have an MRI.  One to two weeks to arrange the matter was all that was needed.  MONTHS later, I heard that it was just a matter of getting one of the three MRIs my GP had ordered done first to prove the device was safe.  So, we whittled the list down to one.  Another month later, I learned that the radiologist wanted me to see a neurologist first, before having a MRI to ensure that it was needed.  Then, last Wednesday, four weeks after getting the MRI finally scheduled, he started a new round of objections centered on having a spinal tap first because of the RISK OF DEATH he is certain I am facing.

Basically, the radiologist is insulting my GP, my cardiologist, and my neurologist because they are all "needlessly" risking my life.  SIGH.

I was so very crushed Friday night.  So very despairing about my kidneys and about the shock of hearing the MRI was in jeopardy.  I am so weary of bad news and having to fight for what I need medically.  Insurance.  Prescriptions.  This darned MRI.

Of course, I have been crushed since the trifecta of how I was treated but the podiatrist, the colonoscopy staff, and the neurologist's nurse.  I have been so very hopeless, seeing no way forward other than to Shut up.  Be still.  Wait until it is over.   The radiologist wants me to do that ... to just let this man who has NO TRAINING in neurology be the deciding factor on what testing I will or will not have in order to assess my treatment options.

And, to be honest, a part of me wanted to SCREAM This is not fair!  Especially since Sunday was my birthday.  Why did I have to receive bad news on my birthday weekend?  It's not fair!  

I was looking forward to my birthday, to having my Facebook friends wish me happy birthday.  But only eight did so.  Is it so very hard to wish someone a happy birthday, especially since Facebook reminds you to do so??  I mean, I have a small group of friends because I want my interactions to be real.  I did start posting most everything as publish, so folk could follow me, if they want, but so that I could keep my friends—keep the ones who could write on my wall—limited to folk I know.  It is such an easy thing to do.  I just wanted to be remembered.  I wanted my birthday to matter.  But it was but a blip.

SIGH.

As far as my birthday goes, I had wanted to spend my birthday money on presents, on things for myself.  The past few years, for birthdays and Christmases, I have been spending the money on needful things, such as medical and bills and groceries.  This time, I wanted to enjoy the money.  However, I caved and spent half on medical and half on myself.

I had decided that the way I wanted to add flowers/color to my haven was to have planters in the back two corners.  For a while, I was contemplating Firewood Man building me ones that matched the fence panels.  However, I decided I wanted ceramic ones.  The evening of my birthday, I went looking, thinking only to window-shop.  However, I found two ceramic planters on clearance that fit my space well, I think.

I wanted to cheat and use pots in the top so that I didn't have to bring in the pots in the winter, lest they freeze and split.  However, I could only find red ones left.  Well, there was one GREEN pot and lots of reds ones.  Hopefully, next spring, I can get the GREEN ones that were a close match.

I couldn't decide which flowers I wanted, so my realtor, who was looking with me, talked me into buying a mixture of coleus.  I think that that was a good idea.  Once they grow up some, I think I will have what I want ... a riot of color brighting up my haven.

So, now, I am officially declaring my haven completed.

The other two birthday "gifts" I bought with my money are a top to wear with my skirts and a small bluetooth speaker to use when I am streaming out in my haven.  The speakers on my laptop are not quite loud enough for my ears.

I thought it rather adorable where Amos chose to sit whilst I was working on putting the pots together.  Look carefully.  Look between his legs.

Today, today I leveraged my anger at the radiologist, after getting the official call about the MRI being canceled, by working on needs in my yard.

I love my Rose of Sharons, but they started dropping babies each spring.  Thousands of babies.  Thousands of babies that I have to dig out of the long bed that is on that side of my yard.  It is grueling weeding work.

I actually started pulling them up last night and got about 40% of the bed done.  Today, I sat down and plowed through the rest of it.  If you look closely at the grass, you will see what is most likely hundreds if not another thousand babies in the yard.  Hopefully, Firewood Man will be able to put out weedkiller this weekend and solve that problem for me.

Frankly, I don't know how many more times I can do this rather grueling job.  Have I mentioned how difficult it is?  It is grueling.  I wonder if I should have Firewood Man dig up the Rose of Sharons and start over with some other barrier to block the rather unattractive back yard of my neighbor.

The soil is incredibly dry and clumpy, so as I worked I dug down about six inches.  When I was finished, I sowed in a healthy dose of gypsum to try and break down the soil a bit.  In the mail today, I received an unexpected $40, so I plan on getting mulch either Friday or Saturday.  Or maybe even tomorrow ... after my lung testing.  I've been trying to figure out how to pay for groceries for my mother's visit and mulch.  Now, I can have both!

Since this was the first window of reasonable weather and no rain, I also sealed the two raised beds.  This one has not been sealed since I put it in ... three or was it four years ago.  I cannot remember. It is looking ever so sharp again now!

The Raised Bed 2.0 back near my haven still has wood that is green!  I mean, the wood has been drying out for 14 months.  It should be ready now!  I think I might should have waited until the fall, but I did not.  I plunged ahead and took care of this bed, too.  I didn't want the raw wood look spoiling the visual rest of my haven now that it is completed.  You can see those green bits, but I still think the bed looks better overall.

The last "wood" task was to seal the back steps.  The lowest one (not quite in the shot) is much more rough than the others.  They could have waited another year or two or maybe even three.  But that step needed sealing, so I did the whole staircase for continuity's sake.  Now, I just have to remember not to let Amos trot outside and down the steps for the next two days.  

I was glad to have ticked off two large tasks from my homeowner list, even if it was because I am so very frustrated.  

And brokenhearted.  

And crushed.  

And despairing.

As far as being a homeowner, the tasks I still need to do is to power wash the airing porch deck, to wash the airing porch railing, and to paint the attic windows that I failed to paint last year.  I'd be mighty happy if I could tend to the latter.  Oh, yes, it is also time to clean the carpet upstairs.  The latter is most likely the only thing I will be able to get done before my mother arrives next Sunday.

The other task I started yesterday and finished today was to strip the leaves off of the dill that I harvested yesterday.  I let some dill go to see, because I was worried about it not coming up again this year.  Hah!  I have dill everywhere now.  I don't mind digging it up, because I have harvested all the dill I downsized from the spot where it is growing.  I was hoping to send some dill out to my dear friends, but I will have to wait and see how much is left once it dries out.  Of course, there is plenty more dill to harvest!

Plenty!

What no one wants to hear...

I spent Sunday and Monday working on building up my larder again, which always makes me feel as if I accomplished something worthwhile.  It is rather amazing to me this way of cooking I have learned.  I mean, learning to cook is the only thing in my life that is moving forward.  The rest of me is falling back, losing ground, fading away.

With all the things that I have learned to cook, I have more than a dozen "staples" now that I like to keep on hand as my main meals.  When the mason jar drawer becomes full, I get out the pots and start cooking.  Usually, I just cook what I am hankering for, but this time I took an inventory of the basement freezer to see which of my staples were low.  That changed my cooking agenda and leaves me with a full freezer of my favorites with 14 different options from which to choose.

It was nice have forward progress for once.

Tuesday ... Tuesday I spent trying to say something first in therapy and second to a friend.  But the words I was speaking did not seem to translate from my brain to their ears.  I have been struggling mightily ever since the colonoscopy, the visit to the podiatrist, and the exchange with the neurologist's nurse.  All three instances of really crappy medical care.  But instances that drive home the need to be ... compliant and quiet as a patient.  Anyone who needs more, needs care beyond that which is not already scheduled and practiced and normal is someone to be crushed.  Crushed by callousness.  Crushed by cruelty.  Crushed by being crazy-labled.

Shut up.  Be still.  Wait until it is over.

More and more, I feel as if that is really what I need to do in the medical world and out.  That I should just ... live that way.  That crushes me.

So, of course, I thought about writing about what no one wants to hear as a means of turning aside my thoughts about the Sanctuary.  The torment and torture of my bowels.  Because I cannot escape them.  And I deal with them daily.  And the wretchedness and ... the shame.  Shame from the part of my body torturing and tormenting me.  Shame from where I am whilst being torment and torture.

I need to poop and I scream from the pain of my pudendal nerve flaring.
I need to poop and I struggle to not faint from the trigger of pain.
I need to poop and I battle nausea from pressure against my vagus nerve.
I need to poop and I vomit from pressure against my vagus nerve.
I need to poop and I battle pre-syncope from pressure against my vagus nerve.
I need to poop and I faint from pressure against my vagus nerve.
I need to poop and I grow weak from pressure against my vagus nerve.
I need to poop and I tremble and shake from pressure against my vagus nerve.
I poop and I scream from the pain of my flesh tearing.
I poop and I scream from the pain of my pudendal nerve flaring.
I poop and I struggle to not faint from the trigger of pain.
I poop and I battle nausea from pressure against my vagus nerve.
I poop and I vomit from pressure against my vagus nerve.
I poop and I battle pre-syncope from pressure against my vagus nerve.
I poop and I faint from pressure against my vagus nerve.
I poop and I grow weak from pressure against my vagus nerve.
I poop and I tremble and shake from pressure against my vagus nerve.

I take five different things just to try to poop every day, because my bowels are so very slow.  This leaves me feeling crazy, because ... well ... who would want to poop, when pooping causes such wretchedness in the body? 

Because my bowels are so very slow, the need to poop can start hours before the act can happen.  That means I am ill for hours.

When I do not manage to go, then I am stuck with the agony of constipation.  A while back, I went 19 days before I finally tried a medication that tipped me over into diarrhea for more than a day.  Violent diarrhea.

And then there is the gas from both a medication I take and from the slow bowels.  The pressure of the gas is enough to trigger pain, nausea, weakness, fainting, trembling, and shaking.  Sometimes, when it is particularly bad, I will mash on my abdomen to try to move the gas along.  But I can become so bloated I look as if I am expecting a baby and the pain of it leaves me writhing on the bathroom floor or flailing about in my bed as if I were a beached whale.

Daily, I deal with wretchedness in my body because of my bowels.
Wretchedness and shame and silence.

It's one battle amongst many when it comes to my body.
A lonely battle.
A shameful battle.
A silent battle.
A weary, dispiriting battle.

If only...

I've been too afraid to open an email from a dear friend of mine. Or rather I have been too afraid to open her attachment. If I were able to truly trust anyone with my ... being ... it would be my dear friend Mary. I know that she will be gentle and always takes such care with her words and the ideas she would like for me to consider lest they tumble me off into despair or find me spiraling back into the clutches of my past. I even really like the idea of coming up with a collection of mantras for me to cling to when my mind is troubled over specific things. Still, I am afraid to see her first draft. To see the words she might have for me.

However, I did open a bible verse that she sent to me. Being ever so sweet, Mary tried to send it in a lovely font for me. However, it is not one I own and so was opened in the harsh font of Ariel. Font aside, I just loved the verse:

“While we are still in this tent we groan, being burdened—not that we would be unclothed, but that we would be further clothed, so that what is mortal may be swallowed up by life.” ~2 Corinthians 5:4

Now, here's the thing.  This is an example of something that I am no longer able to read.  It is the chief reason why I primarily only re-read now.  For I have been an avid reader since I was knee high to a grasshopper.  That I am losing my ability to comprehend what I am reading grieves my very soul.  I can hardly touch the thought.  So, I avoid it.

More and more, though, I come across things that I struggle to comprehend.  I look at this verse and read the first bit and think ... okay ... and then the next bit and think ... wait ... and then the third bit and think ... what? ... the bits are all confusing and seemingly unrelated and not a thought that can be built from beginning to end.  But I know, in my head, that they can be.  And that I used to be able to do so.  And that frustrates me, which makes the whole situation all the worse.

But I do know that this is surely a very Myrtle verse that Mary found for me.  And I am certain that there is great comfort in it for me to receive.  So, I loved it.

If only I could comprehend the words.  

SIGH.

Exhausted...

Every time I look at the haven's fencing, I grow giddy.  However, I have spent the day doing nothing besides watering the pots on the three porches and the new plantings.  And I only did that because we are still in the throes of August-like weather.

I am very, very, very weary from sealing the fencing.
Weary, but giddy.

Looking ahead, I realized that I have a long week ahead of me, with appointments Tuesday through Friday and groceries needing fetching on Monday.  I am not sure how that happened, since I vowed, after April, never to schedule myself like that again.  And, the following week, I have another three appointments, chief amongst them being the MRI of my brain to see if there is an obvious cause for the constant shocking in my hands.  Day in.  Day out.  All day long.  Two hundred and twenty days now of said body torture.  SIGH.  And, of concern, that following week will also be the next round of testing on my lungs to see if the round of high dose steroids is helping.

I am already exhausted just thinking about it.
Exhausted, but giddy.

What I missed...

I've spent the past three days (today included) torturing myself by sealing the wood panels that Firewood Man built for me out in my haven.  I grossly underestimated how long it would take for me to do this homeowner's project and how much sealer I would need.  I know raw wood soaks it up in astounding ways, but I didn't remember that.  So, I had to take time out to fetch more, which is exhausting for me.

Every single time I lay eyes upon the fencing Firewood Man created for me, I am amazing anew at what he did for me.  The cockles of my heart are warmed and my spirit refreshed.  Since I pass by them turning into the garage, I am always cheered coming home from my appointments.

But!
But, oh my!!

My father taught me to use Flood's CWF sealer.  I have always used clear, because it leaves wood a rich, wet sort of look that I have found attractive.  However, I had several folk suggest that I stain the wood a color, most specifically GREEN. I thought about that, but I am not sure I really understand true stain colors and how they work.  However, I knew that CWF comes in a color called "honey gold" and I have been thinking on using that.  Finally, at the moment of purchase, I chose it.  And, I must say, that the end result really did except my expectations.

My haven just got that much prettier!
And peaceful.
And full of solace.

I have held off really adding flowers and plants to my haven, because I haven't been sure how I wanted to do so.  I mean, I am trying to not crowd the place.  And the fountain and the tulip window and the wind chimes all add a specific element that I have enjoyed.  I mean, seriously, now that the fountain is properly gurgling, I have soaked up the magic of the creation of water nearly every second that I have been out there.  I wanted the growing things to also be as good as a fit as those three elements have been.

Whilst I was working, I hung a basket from the tree in a half dozen spots.  I liked none of them.  And the fencing is so beautiful to me, I am reluctant to put a hanger on one or more of the posts.  So, I thought more about my options.  When I was fetching annuals (and on my failed searches for thyme), I spotted some really tall ceramic planters.  I think ... think, mind you ... that I would like to put a tall ceramic planter in each of the corners.  And, wild as it seems, I might just end up putting chives in them to have both flowers and herbs!  [Someone brought me a nice patch of chives on Thursday.]

The planters would need to be a color that complements the pots of my fountain.  And, I think, maybe a squarish sort of shape, so that they don't compete with the fountain in the space.  In any case, I am not certain, but I do think that that might be the way to finish off my haven.  At least, I have been thinking that before I've gone back to look at the pots I saw to see if a second look speaks further to me.

Other than tending to my fence (in four years time someone else is going to have to do the re-sealing), I also tried a new compound butter recipe:  Roasted Garlic and Bell Pepper Balsamic Butter.  Oh my goodness!  This is just plain amazing!  Who would have thunk you could put balsamic vinegar in butter and come out with something super tasty!!  I did make a significant change to the recipe:  I swapped basil paste for the parsley.  I think that it compliments the other ingredients better, especially the roasted red pepper.

I've shared it with my realtor and some neighbors I am trying to get to know better.  Both found it it be exceedingly tasty.  I do not disagree.  In fact, on the morrow, I plan to make another batch so that I can have more for myself, for I still plan to bring the other small portions to my doctors and my therapist.  This is as much a keeper as the Orange Cranberry Butter.  Or course, the Herbed Goat Cheese Butter is pretty spectacular atop steak.  My realtor and her husband had me make them up a double batch to serve at a dinner party atop some London Broil.  She said her guests raved over it.

I am tickled that others are enjoying the butters that I am enjoying exploring.

Now that my labors are quit, I have gone back to rest (and recovery) mode.  I have been shaking for hours and hours now, and my pacemaker is still keeping my heart rate high.  So, I do not feel as if I am resting, but I am.  Well, resting and watching a bit of television.  In this case, I'm watching the Roku channel, looking at the movies that are leaving.  I first watched "The Queen," which was not what I expected and caught me off guard.  So, after that, I thought I would watch "Dirty Harry."

I know that my father introduced me to "Dirty Harry," but I do not remember watching the movies with him.  I wish that I could.  Watching made me sad, for I had a thought that overwhelmed me:

I spent so much time avoiding the conversation that I could never have with my father that I missed the conversations that I could have had.

I feel as if I have been punched in the gut, hunched over and gasping for breath.  It is hard to believe that he has been gone now for five years.  It feels as if he died just yesterday.  That is, when I dare touch that part of me ... which is very, very, very rarely.  So, the idea of what I missed with him is overwhelming.

This evening, I have been struggling with loneliness more so than usual.  [I am lonely every day now.]  I was so busy looking at the forecast to find two consecutive days in which I could seal the fencing (foolishly thinking that I might only need one), I didn't realize that I had come up against Memorial Day.

For me, I often struggle to know what day of the week it is.  I am not good with time, nor do I mark the passing of the days well.  Since I am no longer working and am so socially isolated, I simply do not track weekends or holidays the way that I used to do so.  You could say that every day is a weekend, that everyday day is a holiday ... except for the fainting and the nausea and the neuropathy and the migraines and all the other wretchedness.  But, today, with all the family stuff I started to see on social media, it hit me.  Once more, when the rest of the country is gathering with family and friends (okay ... not the whole country ... it just feels that way) I remain alone.

Alone with the thought of what I missed with my dad.

So, I am giving thanks for the color honey gold and for labor finally ending and for tasty butter and for fluffy white puppy dogs, who are getting ever so much better at comforting.

Not felled...

I've been working on tending to things in the yard. I thought that I had just three things left, but I somehow had several more tasks that needed done as well.  And, in doing them, I have put my working, resting, working, resting plan in jeopardy.  For the fence panels in my haven need to be sealed and tomorrow and Thursday is the first real opportunity that I have.

However, I did knock everything else off my list (and the extras) this evening, finishing by 9:00, which is well before my usual midnight gardening!  I got the remaining annuals planted (though they look so very dweeby in a circle around my ornamental magnolia I might rearrange them), the stray sedum in the front bed relocated, the bushes in the front bed fertilized, the pavers lining the front bed raised and straightened, some ornamental thyme relocated, a row of coral bells that was four plants is now a more balanced row of five, and three spots that I had not yet gotten to weed are now cleared out again.  In a nutshell, other than maybe moving the marigolds again before they get started, I do not need to do anything other than weeding for the rest of the growing season.

Except for that pesky sealing.

I adore tending wood.  All wood.  It is just that I am not capable of standing the way that I will need to be standing to get the fence panels done.  Alas, I am slightly dreading the morrow.  I dread not being able to do the work needing doing in my haven, not being able to be a responsible homeowner. For I know that that time is coming.

And then what will happen to me?

But that time is not now.  Now is a time when I have done the best job I've ever done in trying to manage my strength and tend to the things before me as I am able without punishing my body and leaving myself felled for days or even weeks.  Now that is a most remarkable accomplishment on my part.

The mantra...

Shut up.  Be still.  Wait until it is over.

That was the mantra that saved me when I was little.  It is the mantra that has supported me and bound me my entire adult life.  And it is the mantra that I though I was trying to finally escape.

But the past few weeks have me believing that it is my only hope for ... for ... for successful medical care.  Because, you know, for the most part, medical personnel just want to be a slab of meat.  If that is harsh, I believe it is true.  Of course, the nicer way might be to say that they want compliant patients.  That means patients who do what they are told, when they are told, and who fit the mold.  PTSD patients do not fit the mold.  SIGH.

Thinking about needing to take up and embrace that mantra again with regard to medical care is crushing me.

I tried to speak of this with my sister, but did not get all that far.  However, she did say something sweet.  She said that she hoped that, one day, I could see that the way others treat me is not a reflection of me, but of them.  That what happened with the colonoscopy, with the podiatrist, and with the nurse at the neurologist was not about me, but about them.  My mind simply cannot grasp that.  After all, they are responding to me, treating me the way that they did.

I worked so very hard to prepare for the colonoscopy.  I worked out what I needed to feel safe and to minimize triggers.  I was calmer than I usually am, perhaps because I felt more confident going in with having a PLAN.  Only it didn't help.  I was treated awfully.  And I still ended up with new flashbacks.

It was the dismissiveness, the absolute disregard for my person that is the hardest to bear.  Asking for a wheelchair to get to the bathroom and the abject refusal.  Two nurses with a death grip on my upper arms determined to frog-march me there themselves.  Because it was faster?  Because they didn't think that I needed a wheelchair?  They didn't even listen to my realtor, whom is also a nurse, asking for the same thing.  Even after my telling them that I do not like to be touched.  Even after knowing it is in my medical record, the PTSD, the sexual assault, the triggers.  They simply ignored me.

The nurse at the neurologist.  She was also so very dismissive of me.  She was aggressively rude about my meds list and then my answer to why I would need so many.  Her "so?" was really a "so what?" and it crushed me.  I wanted to leave right then and there, to escape what was sure to come.

Yes, the neurologist herself was a Godsend, in no uncertain terms.  And yet I fear going back.  I fear seeing her nurse again.  I fear what she will trigger within me.

My dear friend Mary posted this on her Facebook wall.  To me, it was as if she were posting it for me.    When I shared it with my therapist, she went ape over it.  Because, you see, it is perfect.  This meme really does speak the truth about PTSD anxiety.

I wrapped this meme around me like a piece of armor.  Someone understood.  My therapist got how profound it is to me to have and to be able to point to with others.  I was emboldened a bit.  And yet it all came to nothing.

Because I am nothing.

Shut up.  Be still.  Wait until it is over.

Puttering about out of doors...

I have been working on putting things together for the spring, though we skipped right to summer.  It is already stinkin' hot!  

On Mother's Day, I did the Spring Great Migration of the succulents that have been wintering in the solarium.  I wanted to do so earlier, but I couldn't find the tray that I use to carry a few pots at a time. Carrying things is difficult, but the amount of stairs needed in the migrations is what makes the task so very difficult for me.

I just so love the front porch filled with greenery!  I still need to get some six-packs of annuals to fill the two planters and three other pots.  Two others I think I will plant more succulents.  I do not wish to add to my bi-annual migration labor, but both pots are really too small for annuals and could be better served by succulents.  The solarium is crowded in the winter, but could bear just two more pots.  Both a floral ceramic parts.  And both are a bright spot on the porch.  So, I want to keep them and I want to convert them to permanent plants.

I also set up the fountain on the front porch.  Oh, man!  I was replacing the pump every year.  Now that I have wintered the pump indoors, I have not had to replace it for three years!  Imagine that!!  Anyway, the pump is installed and the water filled.  I don't have it gurgling at much as in the past, but I do enjoy sitting next to it.

I still need to power wash all the pollen off of the porch floor and clean up the piles of leaves still left from last fall.  And I have a few planters and pots that are awaiting some flowering annuals to bring  a color other than my beloved GREEN to the front porch.

On Saturday, I worked on cleaning up the tufts of grass here and there in my sidewalk pavers.  I do not want to put out killer stuff, because I also have the beginning of moss growing in between some of them.  So, I scooted along my back side the length of the sidewalk and the walking paths, cleaning them up.

I also worked on doing some weeding in my beds.  I cannot do much, but I did, for pride's sake, weed around the three azaleas that I planted last year.  I am very much looking forward to them blooming in all their glory.

The middle one is ahead of the other two, which bums me a bit.  I just don't understand why they are not blooming together.

The middle one is a creamy yellow, whilst the outer two are a brilliant orange.

By pride' sake, I mean that the plan for the bed beneath the rose of sharons, where all those seedlings pop up every year, is to blast it with weed killer.  But I wanted the area around the azaleas cleared now so that I can take photos of them without a million and one seedlings beneath them.

And on Monday (skipping around the days here) I worked on getting the fountain out in the haven set up again.  I had essentially planned on having to spend money on it this summer, but I was able to get it up and running and gurgling significantly without having to do so.  Instead, I changed out how I stack the two pots.  Last year, I followed several examples of stacked-pot fountains and used a plastic pot filled with drill holes so that water can circulate all around it.  This time, I stacked old bricks cross-hatched so that the top pot would be more level.

In order to create a column down the middle in which to drop the pump, I had to put the bricks further out that solid stability would allow.  So, the top pot and its tray of pebbles teeters a bit.  I wonder if it will hold its integrity if a heavy bird lands atop it to play in the water.

I am more and more and more pleased that it gurgles louder.  At night, in the deep stillness, I can hear the water on the back porch.  And I can see the higher curve of water from the kitchen window.  So, my cockles are warmed.

Today, after being accepted to another medical research study, I bought things for the yard, front porch, and raised bed.  I am trying, very hard, to finish of empty spots in the beds.  So, I purchased a hydrangea for the far end of Fern Bed 2.0.  That means I have hydrangea book ends for it!

Fern Bed 2.0 is coming along nicely in its second summer.  There was a spot over to the left of the middle of the bed where none of last year's transplants came back, so I relocated 3 more small ferns from the original fern bed.  That fern bed was started from a few stray ferns I found in my yard.  Now,  have two glorious collections of ferns and three magnificent specimens in the shade bed on the far side of the house.

I was too weary to walk around and take a better angled photo, but the few hostas I found have now been split and grown into four double clumps (eight plants).  I stuck the ferns in between them, not sure if I would like the look.  I still am not sure, but the ferns sure do love the location.  This bed is the epitome of low-maintenance.  I weed it about three times over the summer and that's it.  No watering.  No fretting.  Just joy that keeps on giving.

The other side of the house has been a bit of a failure.  It had that wretched snow-on-the-mountain stuff in there for several years.  Firewood Man finally killed it all off for me and I plant ajuga there, mostly transplanted plants, but I bought four of them, I think.  They all died.  SNIFF.  SNIFF.  The bed was mostly dead last year and I tried to ignore it.  After talking with a guy at Menard's, I decided on planting stella de ora.  It will stay proportional to the space and will re-bloom.  Plus, I have had good luck with the other daylilies I have ... though those all came with the house.

The rest of what I bought were herbs and two vegetables for the raised beds.  This year, the new vegetable I plan to try (to kill off most certainly) is eggplant.  I do not think I am going to do tomatoes again.  I still have sauce from last year and I don't have visitors to eat up the fresh tomatoes when I don't have enough for sauce.  Not being a tomato-eater, it really doesn't make sense to grow them.  However, they have been my best crop to date.  Go figure.

And I bought annuals for the pots on the front porch, the two pots in my haven, and the bulb bed.  I did so enjoy having some annuals in that bed last year.  I am rather bothered that my bulbs mostly did not bloom this year. I don't know if they are all petered out (does that happen with bulbs?????) or if I somehow killed them off (more likely).  I would like to add some bulbs next fall.  But, meanwhile, I think I would like to keep it the one annual spot in the yard.

Finally, I bought soil, peat moss, and compost manure.  I already realized that I had enough potting soil from last year to get the permanent plants into the ground.  I also might possibly have bought one too many bags of peat moss.  However, I won't know until I get all the six-packs planted.

You see, every year I fill those massive hummingbird planters with good potting soil. Those planters and the other pots I use for annuals.  And every following year I re-fill them because the soil is all dried out.  This year, I have decided to try and rejuvenate the soil in the pots with peat and compost manure and forego filling them up with potting soil over and over and over again.

Now, mind you, I know little about plants, but I suspect that the soil in pots gets tired more easily because it is watered more frequently.  So, maybe my plan will not work.  However, I still aim to try.  It will be cheaper in the long run.

I should admit that I am spending the medical research money before it arrives, as well as a check I know I will get for my birthday.  I just do not have money for the yard/raised beds/front porch.  I need to start a savings account for that (to also include the systemic fertilizer I put on my bushes and trees once a year), but I just don't see where that money will come from.  As in ... I don't have what I need!!  I did do me one of my beloved spread sheets based on what I spent (need to spend) this year and the total came out to roughly $15 a month I would need to save.  Impossible as that might be, it is good to have a goal.

Oh, yes, the other things that I bought were two cans of sealer and a brush for the panels in the haven.  They've been drying out all year, having been built with rather green wood.  Now, it is time to start doing the preservation and maintenance work on them.  Hopefully, I will only need to do it every other year.  And those panels will now be staggered with the porches, since I will NOT be doing them this year!  Just a good power washing (soon and very soon) and again in the fall.

With the need for sealer every year, I suppose I should round that savings goal up to $18 a month.  Spreadsheet adjusted.  Yard thoughts closed down for the day.

Although I am utterly exhausted from fetching prescriptions and yard/raised beds/front porch/haven panels things, I still need to get my time in on the treadmill.  Even though I will barely be able to stay on it, I have learned that if I skip a day, then I will skip 10 days ... or more.  It is so difficult for me that I start making excuses each day following the one that I miss.  And, well, if it is not in my Fitbit, then my exercise doesn't count!  So, I have to get myself down to the treadmill and started in the next 25 minutes!

Another loss...

Today, in therapy, there was this moment of pure comfort.  I was telling my therapist about my appointment with the pulmonologist and she spoke into pause of mine: "You must have been terrified hearing that."

She gets it.  She understands the reality of what I am facing, the enormity it could be.  This isn't a matter of worst case scenario, it is about understanding that I don't have an answer, but rather a treatment trial that, hopefully, will work.  But, because it might not, I have the monthly re-testing to closely monitor the situation.  The reality is, I have had a significant decline in function whilst awaiting my appointment due to, at this point and time, indeterminate cause.

But that bit of comfort came after learning that my therapist can no longer see me weekly.  She's been retired since the fall and cannot really manage all the folk she's trying to ... finish ... working just two days a week as she is doing.  All of us weeklies need to go to bi-weekly.  I get it, but ... how do I live this life without her help?

SIGH.

She has been helping me for 13 months now, eleven of them no longer charging me.  For each session, she receives a mere $20 from Medicare, which I am most certain goes to the practice of which she is a part.  So, every single week, I have marveled at her mercy and yet worried that it will come to an end.  Not her mercy, but that she's retired.

How long will she carry those of us she didn't want to abandon in her retirement?
Each and every week has been a blessing.
Each and every week brings me closer to the end.

And I am not ready.

The thing that she also gets is how completely and utterly overwhelmed I am each and every day.  She's watched me grow more ill over those 13 months.  She's seen me.  And she understands how Sjögren's has brought such an increase of suffering to my life.  The suffering and being overwhelmed all day long, every day is too much.  At times, I can shove it all far enough from me to savor the bits and pieces of my life that are filled with grace and peace and joy and not ... illness: Amos, cooking, my home, my haven.  At other times ... I struggle against drowning.

I really, really, really don't know how I will go from weekly help to bi-weekly.
I just don't.

But my dear friend Mary is formulating a plan.
I do sure love me a plan.
The mercy of friends.

How...

I don't know how to write on here anymore. I mean, I long to write, but I find the task overwhelming for myriad reasons.  Chief amongst those is the constant grief I battle over the loss of my cognitive abilities, such as the ease with which I used to be able to write and write well.  But, too, is that what I want to write is so very ... mundane.  It is not that I started this blog to pontificate to the world.  It was a gift from a friend who thought I should write about my life.  But now ... what my life has become ... I just don't know how to write.

For example, I am trying to get two prescriptions from my doctor's office.  I had an appointment and discussed the change on one of them with my doctor.  I should have had her send it over right then and there.  But I knew I needed to check my other medications, so I told her I would send her a message with the mail order pharmacy order.

I did.
It was sent to Walmart.
I got it stopped and put back on my insurance account.
It was sent to the mail order pharmacy with an incorrect dosage.
I've been trying to stop that order for over an hour now.

I am alternately weeping my tearless anguish and battling rage at having to fight and fight and fight because people just cannot do their jobs properly.  I have been transferred all around the mail order pharmacy, at one point transferred over to my insurance company who then transferred me back to the mail order pharmacy, which put me back at the end of the queue.

My pacemaker has gone nuts.  My heart is working overtime to frighten me with palpitation antics.  I am weary in body and mind and spirit.  Lately, I have had to fight such terrible battles with medical care and they are battles that never should have come my way.

I sent a VERY clear message to my doctor, whom I KNOW remembers the conversation we had about the change to one of my medications on the 4th.  But a nurse tried to do the prescription and made a mistake because she didn't READ the message, she just clearly jumped on my chart where the local pharmacy always comes up first.  And when I finally got that straighten out and the claim taken off my insurance so that I could have it filled via the mail order pharmacy, the person who tried to send the order over clearly just looked at the name of the drug and did not READ the message that had the change.

But, lest you think that I was not clear in my message, here is how it started:


I said that I would send you a message with the prescriptions needing renewal at OptumRX. At this time, I need just two:

1. Gabapentin 600mg 3 times a day, 90-day supply, quantity 270
2. Acarbose, 50 mg, 6 times a day, 90-day supply, quantity 540

How much clearer could I get?  I even repeated the name of the pharmacy at the end of the message, along with the two drugs and their information again.

I am weary of having to follow up on EVERYTHING that I need done to ensure that it is done correctly.  There have been so very many mistakes with medical stuff, many of them prescriptions, and house stuff and utility stuff.  Those mistakes have cost me money that I simply do not have.  But they have also cost me the burden of great distress and angst and anguish as I battle to get the mistakes corrected.

For example, it took FOUR BLOOMING MONTHS to get my Internet service bill corrected after someone or some process changed my plan without consulting me.  FOUR BLOOMING MONTHS of having to pay more than I owe because if you do not pay the full amount, as I learned when I forgot to add the $1.99 fee increase into my January bill that was being paid autonomically via my bank, you get charged $9.00 late fee.  FINALLY, my June bill is the correct amount on the correct plan and I can start whittling down the credits that I fought and fought and fought to get back.  No one disputed that I was being charged wrongly, but giving customer credits is pretty much the LAST thing Frontier Communications wants to do.  I have wildly fast FIOS service, but oh did their computer system put me through the ringer.  Since the are the cheapest service available to me, since all I want is stand alone Internet, I had to stick out that FOUR BLOOMING MONTHS and fight and fight and fight to get back to where I was in December.

SIGH.

I am weary.  And I am so very sad at what is happening to my body.  I ache with sadness that sometimes overwhelms the chronic physical pain I endure daily.  I am so very sad and so very alone, the only one to face the distressing news as I go from specialist to specialist, the only one to fight those battles, the only one to ...  well ... the only one.

I am weary of worrying about money.  If not worrying, then counting out each and every penny that I am spending and trying to figure out a way to find the pennies that I need the next day, the next week, the next month.  My dear friend Becky and her husband have helped when they can, which overwhelms me.  And it grieves me as a reminder that my parents refused to help when it would barely be a blip on their financial radar.  In comparison, Becky and her beloved have sacrificially given to me in a way that sobers me and makes me think a lot about Jesus.

And then, of course, when I am devastated by my lung news and go out and buy Blue Bell ice cream, I feel guilty over spending so frivolously when I have absolutely no frivolously room in my financial life anymore.

Six months after the distressing high resolution chest CT, I got in to see a most wonderful, delightful, nerdy, attentive pulmonologist.  She promptly ordered more tests and worked me into her schedule after them.  My lung function has continued to deteriorate, although the exact reason she is not yet ready to say definitively, since if it is Sjögren's, as suspected, that's a difficult diagnosis.  For now, it is treatment and testing and testing and testing.

I have started 35 days of steroids, to shock and awe the suspected inflammation that is restricting my ability to draw in oxygen.  Then, testing.  After another week or so, I will be starting four to six months of an antibiotic that is good with inflammation stuff.  The TERRIBLE news is that I cannot take Zofran with it.  I blanched at the news.  However, since I will be taking the antibiotic Monday, Wednesday, and Friday, she said that I could try using Zofran the other days of the week.  I sank at the news of having to battle the violent waves of nausea all on my own, but I was also grateful that she was willing to see if I could take the medication on the off days.  Of course, the interaction that would happen would involve my heart.

SIGH.

The medications, thankfully, are Tier 1 and Tier 2, so one cost $4 and the long-term one I got for free via the mail order pharmacy.  The testing ... well, that will be something doable, but rather difficult to pay for with my meager funds.  I do not know if it will include the extra test she did or the primary three lung-function tests that I've had twice now.  My share of those in the fall was $44.  I have not yet been able to see what the most recent testing will cost, despite my constant stalking of the claims section of my insurance website portal.  I am hoping it will be the same and that is the number I have to work in monthly to cover the testing until my lungs improve.

I'm not thinking about what will come next if they don't.

The neurologist appointment is a whole other blog entry ... maybe two or three ... but mostly it has boiled down in the financial department into hoping rather fervently not to have a definitive diagnosis on the constant shocking in my hands, because that would be the MS flaring once more and the recommended treatment of Rebif Rebidose.  Something that has a ~$62,000 co-pay on my part, since the manufacturer does not have any assistance programs for folk on federal or state medical plans.  I simply cannot take that treatment.

If it is not definitively MS, then the recommended treatment will be immunotherapy.  There is an excellent chance that that might be covered under Part B of Medicare and, thus, be something that I could swing.  The immunotherapy has an excellent chance at helping symptoms of dysautonomia, Sjögren's, as well as the neuropathy.  I am, thus, greatly looking forward to the possibly of helpful treatment.  But, too, I am afraid of hope, especially hope on the neurological front after having been told by three neurologists in Fort Wayne that there was no help for me to be had in this city ... that I needed to go to Mayo Clinic or Cleveland Clinic.  Yeah right ... like that is going to happen.  SIGH.

Anyway, I've been counting those pennies and trying to squeeze in more medical appointments in now six weeks than I have had in six months.  The money and the exhaustion and the ups and downs of them  (mostly downs) and expenses that I overlooked, such as using more gas in a month than I have in the past three months.  All of it.  I am weary and overwhelmed and alone.

And somewhere along the line I have become a patient whose life revolves around pain as much if not more so than revolving around a host of wretched symptoms that are atypical since they stem from autonomic and/or autoimmune dysfunction.

I live with pain.
I abhor pain.
I am trying to embrace pain.
I long to speak of it.
I long to never speak of it again.

I ache.
I stab.
I throb.
I pulse.
I shock.
I burn.
I sting.
I cramp.

My nerves hurts.
My muscles hurts.
My tendons hurts.
My brain hurts.
My bowels hurts.
My viscera hurts.
My lungs hurt.
My eyes hurts.
My throat hurts.
My skin hurts.
My hair hurts.
My joints hurts.
My iliac crest hurts.

Pain is always present.
Pain is inescapable.
Pain is discrete.
Pain is ineffable.

Pain makes me miserable.
Pain makes me weaker.
Pain isolates me.
Pain makes me a stranger to my own self.

I want to die, with my entire being, at least some point each and every day.

There is little that can be done.  There is no cure.  There is no escaping what my body has in store for me, pummeling me in body, mind, and spirit each and every day.  That is my present.  That is my future.  It is brutal. And it is devastating me.

How do I talk about that?  How do I write about that?