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!