msg to Dr. Sanguineti

Dr. Sanguineti,

INTRO (MyChart message)
We are scheduled to meet Aug 15 at 1pm. There may be some tests you might schedule for me prior to my appointment. What follows is a long description of my current state, relevant to your treatments. I cannot depend on remembering this to report orally. Due to the size limit for messages in MyChart, I provide a link to a file on my blog. It will take you less time to read this than listen to me during our meeting.

As my primary PCP, I seek your coordination of diagnosis and treatment; including consideration of interactions. I will attempt to provide you with as much information as I can – being a person with scientific knowledge, as well as awareness of deficiencies in science and medical practices. I seek the best available. I will accept a sound diagnosis and live with the consequences. But, I don’t want to suffer what might have been cured, had a more complex diagnosis been correct. My arm problem may not be due only to arthritis, , and has become disabling – threatening to get worse. Blood during BMs and strange symptoms possibly related to memory patches area at top of my list. Behaviorally , I’ve become an S/R mechanism.

Much about my health has changed since our last visit, which I will attempt to inform you here. In summary, my health appears in rapid decline, on many fronts. In that tests reveal I DON’T have Valley Fever (2 dogs do), I can’t blame my decline on this. I may have issues with joints, muscles, fascia, nerves, and some organs. In addition to these biological issues, I continue to have senility issues – that may be effecting my ways of handling the medical.

Thank you for taking the time to read this.

TWO MINOR ISSUES – for the record.
A minor issue has been increased itching on my skin, primarily legs and tummy. I scratch until red, then apply anti-itch cream that quickly resolves the issue.

My drive to quickly urinate continues, but I usually make it to the toilet – many, many times a day. However, there can be many hours free from such drives, usually in the mornings. Some nights I pee over a quart, other nights none. The dry mouth from meds for this is too much, given that the meds don’t really help significantly.

BODY PAIN & LIMITATIONS- major disabling coming
On June 20, I briefly saw you when in for my visit with the Geriatric Pharmacist. I complained that my left arm had recently lost much mobility. You moved it about a bit, but we didn’t discuss if further. Since then my movement ability has become much less, with much more pain. I am concerned that this is accelerating and may be more than a normal advancement of arthritis. I can no longer actually perform most of the yoga stretch exercises I could do a month ago – which is suddenly quite shocking. My big concern is that my right arm is going also, and I will be SEVERELY HANDICAPPED.

I speculate that my body pain/immobility issue may be more than joint deterioration. I learned from my recent visit with my podiatrist, that my “greater feeling of ‘heavy’ presence” in my toes was a compensation for loss of neural functioning, by increasing self-sensation. Peripheral Neuropathy? This may account for my many awakenings every night to my hands, each being “one big ‘heavy’ sensory mass”, often including the whole arm. I find it difficult to turn over, but “normal” feeling returns in a few minutes. However, this has accelerated during the past month. It also contributes to my difficulty getting to sleep – for a few hours each night – as I toss&turn to minimize pain and these “frozen-heavy” feelings in my whole arms and hands. During the early hours of 7/28, the discomfort was so severe that I thought that – if it didn’t ever change – I would be motivated to do something tragic.

A lesser form of this has continued during the day, but tolerable and more an inconvenience – until recently. My left arm has become a troublesome handicap. This is made worse by my rapid loss of coordination with hands and fingers. Buttoning shirts has become very difficult, as with putting a handful of pills into my mouth without dropping a few. My typos tying have increased greatly, requiring much editing.

My left arm began to change about 2 months ago, I know of no trigger. The decay, focused on my elbows has been a slow progression over many years. Now, any pressure or tension brings sharp pain. There are resting positions where the pain is minimal and no issue. Fortunately, this includes typing on my keyboard. But, no turning door knobs or opening jars, or opening the mailbox. Using a fork in my left hand to hold down food so I can cut it with knife in my right hand, is no longer possible – unless I want the pain. There are a few positions I can carry light items with my left arm. Now, when carrying an item to put back into the frig, I can use only one arm. I must set the item down, open the frig, pick up the item with the same (right) arm, and then close the door with my right arm – or bump with my hip. Cleaning up dog poo has become impossible (I can’t hold the pan on which to scoop the turds, and can’t carry the pan from turd site to turd site). This has been a painful task for almost a year, but has now become “intolerable”. I probably could push through the pain if a necessity. However, I am fearful in the shower as I can’t trust my left arm to grasp the bar if I was to start falling. Using my left arm to wash my hair, or brush it, is no longer without pain. It is painful to put things in my left pants pocket, or pull them out. It is strange how this minor limitation disables so many normal functions. This is also limiting my exercising and yoga stretching with Jamie over Zoom. I daily discover tasks I can’t perform. I am concerned that my right arm be “next to go”. With both arms dysfunctional, I will be severely handicapped.

Both elbows have no soft tissue and I can’t straighten my arms. They are “terminal” (according to my rheumatologists) and nothing can be done but elbow replacement – which I won’t do, I won’t submit to the risks of optional surgery. There is not only sharp elbow pain in many positions, but also muscular pain – at times – from wrist to shoulders. Until a month ago, which arm was slightly worse than the other alternated, but more often the left arm was worse. I am longer believe it is all from my elbows, as neuropathy may also plan a role, as well as something wrong with the tissues (muscles, fascia, tendons).

Concurrent with this, I sometimes experience hip pain more troublesome than knee or arms. This is most troublesome after getting out of bed. Recently it is my left hip, which is opposite to my more difficult right knee. For the first time, this left hip pain has blocked exercising and slows me down when walking (during shopping, for example). My knee pain has not increased and has been masked by other issues.

I have not yet taken to using a cane or walker (I have both available). I have purchased and use a medical alert; but will soon limit its use to only around the home. The cost for mobile is high, and if I fall there will always be others around to help. Both knees and hips alternate in limiting my movements. Sometimes I can shop with Eloise (she in the motor chair). Other times I don’t bother to try.

Recently, I’ve taken to wearing compression socks (for the increasing varicose veins – A SEPARATE ISSUE), braces on both knees, and socks with treads This stabilizes me a bit, reducing my lurching in all directions when walking. These lurches are potential falls, but I seem to catch them. None of my falls have resulted from lurching (bumping into walls and furniture when moving about the house). I am slipping into paranoia about falling, and the consequences.

I don’t know if I should increase my pain medications, which currently are quite limited.

Recently I’ve been envying Stephen Hawking!

I may need a colonoscopy (for which I must prep). I had colonoscopies 2009, 2005, 1998, 1995. If my memory is correct, my last was a double ended, combined colonoscopy and gastroscopy – the date I can’t yet find, or where. I have a history of polyps, and my father was a fertile field for them.

On 7/27/17 I had a difficult and painful BM. The stools were hard and of large diameter, and covered with blood. The toilet paper was deep red in blood. I have had minor blood in stool and paper the past few weeks. Since, over a year ago, I started dedicated daily use of powdered laxatives, my BMs have been regular and non painful. A few months ago, due to some very runny BMs, I ceased regular daily laxatives. Although I have “take laxative” on my daily TODO computer schedule, my poor memory often leads me to skip. My records show my last prior BM on 7/24/17. I have no record of taking the laxative from 7/19 to 7/24, too long. I had a normal, small BM on 7/28/17, and all subsequent BMs have been normal. I have returned to a daily regime of laxative: [approximately two teaspoons Polyethylene Glycol + one teaspoon Psyllum fiber in 8oz water; also one 10mg Docusate Sodium stool softener capsule]. In my conscious mind, my “yesterday” blurs into a whole past week, or more. Only my computer informs me of correct details. With regular laxatives, my BMs can be normal. Whether I need a re-examination of my colon is questionable, given the risks.

Another issue involves the following symptoms and attempts at treatment:
Symptoms: very sudden onset of rising urge to vomit (dry heave), but more from brain than from gut. At most I spit up some liquid, but not from my stomach. Lying prone removes the urge in a minute. However, it may take an hour or two to be free to be vertical.

My most recent episode was at 11am 8/2/17. This occurred within a few minutes of (1) taking a handful of pills and (2) removing a large memory patch. The prior episode was about 3pm 7/25/17 (also related to taking pills and removing patch); when I was in bed 2 hours. I am far more relaxed than usual, when resting in bed, during these episodes.

A much more severe form of this occurred twice before; each about 10 days after starting an oral med to improve my memory. Same symptoms for two different oral meds. During these sessions I did spit up more stuff – but not a stomach vomit. Until I was prone in bed, I seemed to lack a sense of up&down (vertigo?) I immediately discontinued those meds.

I am using a medical patch [Rivastigmine Transdermal System) for memory, which did help memory and didn’t have these symptoms. The patch came in two sizes. After some months with success with the smaller patch, I asked for the larger size and started using them. After 3-5 days using the larger size I started experiencing the symptoms as I recently experienced (8/2/17 & 7/25/17) – but with no direct evidence it was due to the patches. I began cutting some patches in half and alternating the half patches with whole patches. Seemed to work. Then, meeting with my “Geriatric Pharmacist”, I was informed cutting the patches would cause problems. So, I got a supply of both sizes. I have recently been inconsistent in using them – often missing days. 7/25/17 was the third day after restarting with only two large patches – which shouldn’t have caused problem. I removed the patch as soon as the symptoms started. However, the symptoms started only minutes after I took my handful of morning pills. I have also noticed this coincidence. There is nothing new in my morning pills. I have yet to discover and stabilize a sequence of small and large memory patches. Also, to discover the cause of these symptoms. For the episode of 8/2/17, the large patch was applied 7/24, 7/27, 7/30, 8/1. My senility has blocked my not noticing that I seem to skip days. I remove the patch and somehow forget to put on a new one, at the time.

Behaviorally, I have become a Stimulus/Response mechanism.  I often must respond immediately to the stimulus, or will forget it – in seconds. I bounce around the house responding to reminders of things to do. My TODO list on the computer (as a set of stimuli) is often useless, unless I act the moment I see an item on the list. Yet, once in a while I will surprise myself by thinking – out of the blue – to do something. But, this is rare.

As I type I can make 5 or more typos per line. I often hit two keys at once, or the wrong keys, or hold them down too long – generating a long string of letters [did this three times in typing this paragraph]. A good part of my composing time is fixing typos; about 12 during the typing of the past sentence (extreme?). I should learn Speech2Text (which I once had). My increasing slurring in speech can be better handled by the computer than by persons trying to comprehend my speech.

Much of the time when writing and reading I am being stimulated to new insights – most of which I forget, unless I shift to another app and make a brief note about the insight. This list of notes is also a source of stimulus for composing. I may expand them within my ECCO outliner (no spell checking). I will later copy/paste into my Nexus-Lexus NoteMap outliner. Later, I will copy/paste from NM to my blog. Sometimes I initiate a new post in NM, or even in my blog. What is becoming more and more frequent is my discovering essays (in ECCO, NM, or by Blog) – which I don’t remember composing – or that I had started and forgotten to finish. There is no order or indexing of my production.

Currently, my most frequent productive mode is email essays that start as a simple reply (S/R). My creative mind takes over and expands the emails into long essays – which I send to a list, in addition to the persons I am replying to. Sometimes, I copy/paste the essay into my blog and only include the link to the post in the email reply. This practice consumes much of the creative time on the computer (hours per reply – often many hours), taking away from prior efforts designing more structured documents and working on more ambitious educational processes/curricula for the development of more comprehensive conceptual schemes. I appear to no longer have the discipline for these, although they are what I should be doing.

I am no longer motivated to write on my ideas – without simulation. This is new! Often, I don’t return to computer after evening TV. I know I should compose; I enjoy composing; but I am no longer stimulated to work on any specific idea – just “out of the blue”. While composing, and reading, I do get frequent insights – many that motivate me to compose more – even if only a few sentences to create a space for more work. These essay beginnings now number, literally in the high hundreds (just for this year). In the past I would often have insights when doing routine tasks – but no more. When performing routine tasks, mind is busy talking to myself about what I am doing, and attending to keeping on task; also my attention is to my pain and my awkwardness. More and more I discover myself omitting steps  in a task or performing they out of order.

More and more I find myself simply sitting or standing – as in a trance. My mind attending to my high, relaxed comfort and then wondering if and when I should “come out of it”. Such states sometimes occur while sitting at the computer, staring at the screen.

The issue is that I can still be much more creative and productive, were my behavior managed by others. I (believe I) have many novel insights, relevant to the survival/thrival of Humankind/Gaia, that I have responsibility to share. I have tried to program my computer to assist me with this function – and have made considerable progress. Yet, I must be motivated to engage using these systems, as well as designing them. I really need the help of a team or community, which is my challenge – now – to create. So long as my body permits.