Kaizen: Day 173

Maintaining 30 minutes on the bike daily. Though for a while there, I was setting an alarm to get up by 5:55 every day, and was knocking out an hour a day, Monday-Friday. Then I dropped down to Monday, Wednesday, Friday. 

For the last few weeks I've been very flat, perhaps even depressed. Of the litany of reasons why my mood is bottoming out might be:

1. August's heat and humidity.
2. Spending the majority of the month without my co-worker who sits closest to me (who is the first person I see daily and is a very positive person). 
3. I have been on Jury duty for the last few weeks. 
4. I told off a petty, trouble-making relative.
5. I turned 50 this month.
6. Or it might be a combination of these things. 

Also worth mentioning, that for the entire month of August, my physical therapy appointments which normally are on Saturday mornings, had to be moved to Tuesday nights this month, because my physical therapist isn't available--and this really threw a monkey wrench into the structure of my Saturdays, as my physical therapy appointments were the catalyst to get me out of the house, and into motion do do doing things. So my whole routine has been off, and I just feel wiped out. 

I haven't done anything towards improving my sleep hygiene, and I'm still struggling to get out of bed in the morning, and by extension, this is impacting how much time I get on the bike. Plus, we've had a few cool evenings, which makes it great sleeping weather, so once I finally DO drop off, the last thing I want to do is get out of bed.

This weekend, I didn't bother getting on the bike at all, so I absolutely had to make an attempt today, otherwise, I was fearful of backsliding completely. 

I'm keeping up with all my supplementation and self-care.  

Physical therapy tomorrow, and chiropractic on Thursday. Beyond this, nothing new to report.

*Note: Physical therapy never happened. This therapist became increasingly more difficult to schedule appointments with. His unavailability was part of a greater cascade of events which have actually added to my pain, anxiety, and depression issues.

Kaizen: Day 111

Got up at 6 a.m. 

I knocked out 30 minutes on the bike, packed my lunch, and managed to make a batch of Beef Burgundy in my pressure cooker, before showering up and heading out for an 8 a.m. orthopedic appointment which was booked spontaneously yesterday.

Not to belabor the point, but I'm in a LOT of pain. The NP has been going through the motions to file an appeal with the insurance company to approve the hyaluronic gel injections for my knee. This has been going on since May, as I was hoping to get the shots on schedule in June. And here it is, June is almost over and no shots. 

I called the NP to follow up on a voicemail she left me, and mentioned how much pain I am in, and can I get a cortisone shot in the interim while we wait for the insurance appeal process to conclude.

I got the shot in the knee, plus an Rx for more PT, plus an Rx for meloxicam. 

On my to do list today, I need to update my supplement list, and email that PLUS my full radiology packet to the NP.

Perhaps some TEMPORARY relief is in sight.

PERHAPS.

While I am philosophically opposed to cortisone, for what I feel are justifiable reasons, at this point, I'd snort Draino if someone said it would help. I view the cortisone as = to Draino at this point. 

Doing nothing, as always, is not an option for me. Even sitting still, appearing inert, I am always thinking.

The only card I can play right now is to do whatever is necessary to keep walking, and at the moment, the cortisone + meloxicam is the only option for me (well, the only option, in addition to my regimen of chiropractic adjustments, acupuncture, and physical therapy). 

Look how dismissive I am about "the only card."  On the surface, I'm so dismissive as if I only had one of a kind; but the reality is, I have either four of a kind, or possibly 1 card shy of a full house. (I need to get better about my playing card analogies.)

All The News That's Fit To Blog

Oh crap. I thought I had enough stamina and give a fuck to sit here and peck out an update regarding Monday's trinity of appointments. I guess I'll have to do a quick and dirty.

Appt #1: Rheumatologist. Clear bill of health. No auto-immune inflammatory diseases causing my pain. NEWEST DIAGNOSIS: enthesitis. On an upnote, my blood pressure was 110/64, so apparently, the combination of riding my bike 30 minutes each day, PLUS tinkering with my magnesium formulation (I transitioned from magnesium oxide which I was on for years, to magnesium glycinate, and in the last 3 weeks I transitioned to magnesium taurate). My bp was trending lower when I got my bp checked before acupuncture appointments, but this was my lowest reading yet.

Appt #2: Orthopedic surgeon. I went for a consult to see if I could get surgery on my knee. Turns out, despite the degeneration and oseophytes in the knee, I'm not "there yet," and the result of the physical exam was that the bulk of my pain isn't from the degeneration in the knee, but is soft tissue realted. Second diagnosis of the day: enthesitis.

Appt #3: Endocrinologist. I decided to err on the side of being conservative and seek out an endocrinologist. It was 14 long years of going 3-4 times a year to my former endo, and I was hoping I could get away without an endo. Initially I thought my GP could handle things, and then I got it in my head that a possible mover-and-shaker for the pain might be hypothyroid. The appointment was informative and uplifting, and I don't have to go back for another year.

So while yes, the results were good and positive: Yes, my blood pressure is the lowest it's been since I was in my early 20s; and NO, I don't have RA, Psoriatic Arthritis, Fibro, etc; and NO I don't need surgery yet--getting a diagnosis of enthesitis doesn't really help me. I already knew or sensed what this IS (pretty much it's a systemic tendonitis and inflammation of the enthesis, the point where tendons attach to the bone--and possible arthritis related to this too), it doesn't help me eliminate or even minimize my pain.

Hell, even my theory of it being pseudogout was a nonstarter--as my TSH report from the endocrinologist came back well within normal parameters. 

The day was beautiful, and appt 1 and appt 3 were both at the same location, with the ortho blowing a hole through my day by not being able to move that appointment later in the afternoon. 

Appt #1 and Appt #3 were at E85th, and Appt #2 was at E38th. And well, once Appt #2 was over, I convinced myself to WALK back to E85th. And I did more walking afterwards, and before I knew it, by the time I got home, I realized I overdid things. Here it is, four days later, and I am now walking with my cane. If I have a good day, a good day is as bad as a bad day (or perhaps even WORSE than a bad day), because I end up overdoing things and paying a hefty price for days or weeks after.

Imagine it. Me. In pain. Back, hip, knee, groin, you name it, and I managed to walk this far.

I have no recourse for treatment other than to find YET ANOTHER physiatrist*, start from scratch with them, get more Rx for PT, perhaps get some cortisone shots (yes, plural) and hope that helps get me through the hump. And I've been doing a bit of research regarding buying a cool laser so I can treat myself at home. Pricey! But I am sure it will all even out, if I were to factor in how many appointments I'd need with my chiropractor before I start feeling any relief. 

So, I am now bottoming out, mood-wise, I feel like shit, and I'm walking with my cane, and I'm wondering why it's an ALL OR NOTHING thing with me. Why couldn't I just have stopped walking?

*Note: It took me eight more months until I located my fourth physiatrist, aka P4.0. 

THEN AND NOW

Medications that I used to be on before my gastric bypass:

Riomet/metformin
Actos
Tricor
Effexor
Quinipril
Aldactazide 

Additionally: I was on Xenical and later Topamax, both with the promise of helping me lose weight (and the Topamax was promised to help my migraines), and both medications did NOTHING except make me miserable. I was also promised the metformin would help me lose weight and what a load of horse-shit THAT promise was. I had over 10 years of gastric distress.

After my bypass, how many of those medications am I still on?  TWO: quinipril and aldactazide.

Medications & injections I have tried in the past to help my assortment of pain:

Cymbalta: The promise was it would help w/depression and low back pain; it did nothing except make me gain 10 lbs I have YET to dump off;
Frova: This helped me a lot; and about 3-4 years ago, a neuro-ophthalmologist I was seeing suggested I start taking Vitamin B2 every day, and I stopped taking the Frova entirely; 
Kenalog: I had precisely 1 kenalog injection into a facet joint in my spine and it did nothing;
Cortisone: I had precisely 1 cortisone shot in my elbow and it did nothing;
Synvisc/Euffexa: I went through a year of shots 3 in each knee, 2x last year, and it helped, minimally. 
Topamax: I went on this one more time, this time at the suggestion of my neurologist, who promised me it would help with my chronic pain in my low back--it did nothing for the pain.
Tramadol: I had an Rx for this for the longest time, and to be honest, it didn't do all that much except make my head fuzzy.
Flexeril: It worked in so far as it helped me relax enough to go to sleep. 

Pain medications I am on to this day: ZERO.

Treatments I have had in the past for my pain:

Physical therapy--though it was all exercise, no hands-on fascia work
Kenalog injection
Diflucan patch
Diflucan gel
More physical therapy
Occupational therapy with a hand specialist for my unrelenting elbow pain
Chiropractic
Deep tissue massages
Trigger point injections with massages after
Synvisc/Euffexa injections
High volume saline injection under IT band
Cortisone injections in bursa in elbow and hip
Ultrasound
Cool Laser
TENS/EMS

Of those treatments, which ones do I continue to this day: ZERO.

Current pain management plan:

Chiropractic
Physical therapy w/myofascial work & traction
Acupuncture
Deep tissue massages 

I would like to buy a professional grade cool laser for home use. And I am actively looking into getting my right knee replaced.

Speculating on Cascade Effect

I cannot help but wonder if my gastric bypass which I had in 2011 is to blame for so many of the problems I am having:

• Thyroid nodules (Possible new diagnosis I anticipate coming: Hypothyroidism)*--I don't recall having them (or as many of them) prior to the bypass. Surely, losing weight made detecting the nodules more obvious; however, I wonder if this is the result of the excessive amounts of calcium citrate my bariatric surgeon insisted I take daily (2000 mg). I only cut it down to about 800 mg about 3 years ago, so I cannot help but wonder.
• Proteinuria--I don't recall having this big of an issue with protein in my urine like I do now. I vaguely recall "microalbumin" but it wasn't anything my endocrinologist would remark upon. I cannot help but wonder if this is the result of my diet being protein-focused, and I'm considering dropping my daily protein shake (23 gm).
• Hyperuricemia--I don't recall being diagnosed with gout or borderline for gout, prior to my bypass. I know I was being monitored for it, but I don't recall all too many months where my lab reports documented levels in the 6-7 range. Again, too much protein? Or some other root cause? Between the proteinuria and the hyperuricemia, I am TERRIFIED of kidney failure.
• Chondrocalcinosis (Possible new diagnosis I anticipate coming: Pseudogout)*--Last year I had an MRI of my knee and the notes had a remark about chondocalcinosis present. This is above-and-beyond osteoarthritis, and from what I can determine from just a preliminary skim, the chondrocalcinosis is calcium crystals, whereas “gout” is urate crystals.  I have sought out a rheumatologist for a consult, and found a new endocrinologist and hope to get this mystery figured out.
• Post-Prandial (aka "Reactive") Hypoglycemia--It seems in my zeal (and terror) to reverse my risk factors for Type II Diabetes, I have traded it off for post-prandial hypoglycemia. I am not on medication for this, and manage it by eating multiple smaller meals throughout the day, and avoiding excessive consumption of refined carbohydrates. Even things like fried chicken could be enough to make my glucose dip a bit. I do love crunchy pretzel thin crackers (not more than 1-2 oz), but you gotta live a little--right? Mama needs flavor and texture.
• Enthesitis*

*I have noted these three with an asterisk as they could very well be linked or otherwise inter-related. I have my suspicions of the hypothyroid, as I've got a lot of symptoms that could be related to hypothyroid (which could have been dismissed as symptoms of my PCOS). 

Also, it'd be nice *IF* hypothyroid *IS* the culprit rather than pseudogout or RA, or Psoriatic Arthritis. Given the choices of medications, I'd say Synthroid is the lesser of the evils (evils being things like methotrexate, Colchicine/Allpurinol, and other medications that carry with it more unpleasant side effects).

I have highlighted in red the hypothyroid symptoms which I currently am experiencing:

• Fatigue
• Increased sensitivity to cold (more pronounced after my gastric bypass)
• Constipation (more pronounced after my gastric bypass)
• Dry skin
• Weight gain & inability to lose weight (See also: PCOS symptom)
• Puffy face
• Hoarseness
• Muscle weakness
• Elevated blood cholesterol level
• Muscle aches, tenderness and stiffness
• Pain, stiffness or swelling in your joints
• Heavier than normal or irregular menstrual periods (See also: PCOS symptom)
• Thinning hair (See also: PCOS symptom)
• Slowed heart rate
• Depression
• Impaired memory

In the interim, between seeing my rheumatologist on 5/23/18 and when I see him again for a follow up on 6/18/18, I have held off on taking my resveratrol and cherry extract, and I have cut my alpha lipoic acid in half. 

The alpha lipoic acid and the resveratrol might be impacting the conversion of T3 to T4 (and I don't know enough about what testing that was done in the past to know to what level or generation my thyroid function was being tested). But I figure it was worthwhile holding off on these particular supplements until I see the rheumatologist and the endocrinologist on 6/18/18.

Additionally, I am holding off on taking my cherry extract, as I am suspecting that there could be a possibility I was over-doing my anti-oxidants and perhaps my constant pain/discomfort might be the result of a pro-inflammatory effect. I figure a month without these supplements might be enough to see if my theory proves true. I just worry about the impact of going without will have on both, my cholesterol levels and my uric acid levels.

Kaizen: Day 48

I have been maintaining 30 minutes on the bike every morning for several weeks (almost a full month now), and I am contemplating concluding each work day with another 30 minutes. Maybe that will happen at some point this week, I don't know. 

I'm more than a bit ambivalent with a lot of things right about now, primarily due to me daring to HOPE that the job interview would have led to a job. They let me sit and stew for four weeks and let me know this past Friday that I didn't get the job. Yesterday was yet another indication of how shitty this place is, and how I desperately need to get the fuck out of here, and yet, me and my shitty knees and pain problems intimidates me into thinking I cannot manage the subway stairs every day.

I was in Manhattan on Saturday, escorting the daughter and son-in-law of a dear friend around town. We went from Times Square where their hotel is, took the shuttle to Grand Central, then the 6 down to Little India, where we had lunch and did a bit of shopping, then Uber'd it down to China town and Little Italy for another knosh and coffee and pastries and Malaysian beef jerky shopping, and before I knew it, I had amassed 11,210 foot steps. I was going to share the screen cap of the fitness thingy from my phone, but I can't upload images to the blog ATM.

So while I have felt all along that the biking was not helping me in my day to day pains, apparently it has helped me in other ways, namely my ability to walk A LOT, and the next day was just like any other day for me. This is not to say I was pain free; however, I wasn't crippled up with ADDITIONAL pain, meaning MORE pain on top of my status quo baseline of pain.

I called NYU Langone this week to find out about scheduling a consultation with the surgeon who performed the knee surgery on my nephrologist. I sent them my imaging bundle of my lower extremities, and I should know, hopefully, by tomorrow if I can have a consult with that surgeon or if he will refer me to an associate. And while on the surface it might not seem like my knee problems are extreme enough to warrant a knee replacement RIGHT NOW, I am having horrible difficulties climbing the scant 15 stairs to get into my house, and couple that up with the IT band syndrome and the trochanteric bursitis in my hip (all on the right side), I am finding I am able to do less and less, and I fear that it will continue to self-perpetuate. 

Additionally, I am convinced the collection of pain issues is limiting my mobility and the things I choose to do, and is most likely the reason why I am unable to lose more weight, as well as having difficulties maintaining whatever I've lost as well.

First Post of the New Year (and February is almost over)

So where we left off--Thanksgiving was a hit, always is, and in the end I'm glad I do it. The end of the old and beginning of the new year brought with it a phenomenal trip to Asia, and despite gastroenteritis and being stoned on scopalomine, and having my joints GROUND AWAY by all the walking and stairs, it was an amazing, amazing trip.  

I got back in the office on January 11th, and I decided to try and find my pink unicorn I have been looking for, forever: a DO (doctor of osteopathy) who is an internist (vs one who is in sports medicine). And my glorious pink unicorn is three blocks from my office, and she takes my insurance. I set up an appointment for the following week to establish myself as a new patient.

The first visit went well, and I arrived well prepared to have an actual discussion on things I wish to accomplish this year: get an ortho consult to see if I can start the process to replace my knees, get a gastro consult to see if we can find out the cause of the RLQ pain I have endured 5 out of the 7 years since my bypass, and the last issue is whether or not I need to get a new endocrinologist, or can she monitor my bloods and send me out for thyroid ultrasounds, to monitor my nodules in my neck.

The first visit, she knocked everything out of the park on one go. I got my referrals for the ortho and gastro, and she said she could handle monitoring my nodules. And before we concluded the visit she asked if there was anything else I needed. I said how I thought I saw on their site that they had an acupuncturist in their office, and she responded in the affirmative, and I promptly scheduled my first acupuncture visit for the following week. 

The next week came the ortho consultation. And right now, they are not in a rush to get my knees replaced, and there was mention that if I DID get my knees replaced, perhaps a partial (where they replace the knee cap) would be better for my situation. My physical therapist suggests no, due to my pain being all on the outside of the knees. Follow up on 2/28 w/the NP at the ortho's office for a Rx for more PT, and give it one more month until another discussion and assessment.

Along the way, the Maharajah started to get anxious about this mole on his shoulder, and said how he said it felt like it has "changed," which immediately gets me anxious, and we scheduled time for him to get in to see the doctor--I thought she'd give him a referral to a dermatologist--but no! She was able to figure everything out for him in one go. She assured him the mole was a keratosis, nothing to worry about. She had him provide a stool sample because he was having problems with his gut since our trip, and while he was there, she gave him a flu shot. Yet another HOME RUN my "Pink Unicorn" knocked right out of the park, again!

Last week was the gastro consultation. And I knew I was in the right place, as he made very quick work with figuring out what my pain is, as neither my bariatric surgeon, nor my former PCP (who is a gastroenterologist!) were able to figure this out, especially given when they do their examinations, they NEVER ONCE removed my surgical gown to see that the very site of my pain (and it's deep in the meat/fascia) is directly beneath a puncture/incision site for my bypass. 

Turns out whatever pain I have been experiencing is not something wrong with my cecum or appendix, but is NEUROLOGICAL pain, as the nerve that is right there must have been nicked during the surgery. The pain comes and goes and isn't a persistent-every-moment-of-every-day type of pain, and yep, YOU GUESSED IT, there is nothing they can do for it. But at least I know it's nothing more serious than a damaged nerve. That aside, we have scheduled an appointment for a colonoscopy (FINALLY!) to take place in about two weeks. 

The only little red flag that has popped up so far is, I scheduled a day off to accommodate what should have been my annual check up (fasting included) as well as the gastro consult--and Pink Unicorn had to reschedule. The rescheduled appt is this week sometime, so let's see if she is able to keep that appointment, or if I'm going to have to rethink things. As it stands, it's pretty inconvenient to go to the Pink Unicorn, as the office does not have evening or Saturday hours, and I have to schedule time from the office to BE THERE. 

To have appointments rescheduled can really mess me up--and given that the appointment I originally had was a 9 a.m., with the gastro guy being at 2, Pink Unicorn pretty much blew a hole through my morning. So, only time will tell if it was a "one off" type of thing (that happens to everyone, from time to time), or if it will be a thing that defines her character.  Hurry up and wait.

And not to be outdone, I've been pretty pleased with the MD who does the acupuncture. I've seen her 2x thus far (with a third time to be on the same day my annual physical takes place with the Pink Unicorn), and I find it hasn't helped much overall, but it has helped the bursitis in my right hip a smidge. 

My medical insurance will cover acupuncture for up to 12 visits, so I'll ride this out until the end of March, by which point in time, it should be about 5-6 visits into this relationship. During the first visit, while I am prone on the table with needles sticking out of me like a porcupine, she asks, "Have you been screened for fibromyalgia?" And I have to admit, that NO, I haven't, and it would upset me immensely if I get that as a diagnosis.

And the last thing to be addressed on my "list of three" which I presented the Pink Unicorn in my first visit, will be getting my thyroid monitored. She'll run a thyroid panel with my CBC and Chem7, and hopefully I'll walk out of that office with a Rx/scrip to get the sonogram done. 

Once March is over, I can coast until almost the end of May when I see my kidney guy again for a routine visit (I go every six months), and I have scheduled a consultation with a rheumatologist at that same practice (to keep all the information in one place, and hopefully whatever the rheumatologist thinks will complement or enhance what the nephrologist thinks. I'm already being monitored for gout/pre-gout, and given that one of my MRIs had some notation of CPPD or chondrocalcinosis, the possibilities are endless right now about what might be causing my pain: gout, pseudo-gout, pseudo-RA, pseudo-polymyalgia-rheumatica. And depending on how the rheumatology consult goes, I hopefully can coast on through until December without seeing another doctor.

*ETA 2/12/19: Pink Unicorn or no, scheduling is a huge issue for me, and I'm at the point in my life where I shouldn't have to work hard at scheduling appointments around a very limited office schedule--Pink Unicorn doesn't have evening or Saturday hours, so it's a challenge to schedule to get in to see her around MY work schedule. Pink Unicorn or no, I'll need to find an internist who actually will play nice with MY schedule.