Saturday, June 30, 2018


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.

Friday, June 29, 2018

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.


Thursday, June 28, 2018

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).


Wednesday, June 27, 2018

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.


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.

Thursday, June 07, 2018

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.

Wednesday, June 06, 2018

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 Sj√∂gren’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.


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.


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!