Friday, August 07, 2015

Syndrome & Medical Condition List

Itemized list of medical conditions, syndromes and complaints from head to toe, with my chronic pain issues highlighted in red:

Dry scalp (scale, at times similar to mild plaque psoriasis)
Migraines (mostly menses)
Clinical depression/anxiety 
Sleep disturbance
Herniation at C4/C5 (+1 more)
Retinal nerve druzen
Myopic, astigmatism in both eyes
Deviated septum
Approx 7 nodules in thyroid
Mild-to-moderate Carpal Tunnel Syndrome, (L) hand
Intermittent cystic acne under chin due to elevated androstanedione
Asymptomatic, idiopathic granuloma in left lung
Hypertension
Idiopathic, non-problematic palpitations (Possible panic attacks)
Hypercortisolemia
Unrelsolved, idiopathic elevated DHEA
Approx 4 cysts in kidneys
Intermittent/transient proteinuria
Borderline gout
Osteo-arthritis
Past history of fatty liver syndrome
Syndrome X
PCOS
Adenomyosis
Past history of fibroids
Squamous cell atypia + 1 recurrence prior to laser surgery
Herniation at L5/S1 (+1 more)
Spondylolisthesis I of low spine
Trochanteric bursitis, (R) hip
Compromised ACL, both knees

Note to Self

Endocrinologist appt on 8/19

Concerns/issues to discuss:
  1. Screening for DVT; ask for a d-dimer test. Check! Done! Rx for test written!
  2. Do I exhibit signs for Lipedema? (Mother has lymphedema; prior to that exhibited signs of lipedema--currently handicapped and housebound due to complications from both) Negative so far!
  3. How different is DIC vs Factor Five Leiden Mutation? (I tested + for FVLM; brother, however had DIC, and exhibits signs of lipedema). Quit worrying, you can only have one or the other!
  4. Saliva adrenal profiles (re: DHEA, cortisol)? 24 Hour urine collect is much more effective for diagnostics.
  5. Ehlers-Danlos Syndrome? Negative.
  6. Is it meritable to do a follow up ultrasound of the thyroid? Yes. Scheduled for 9/23.
  7. Should I consider pro-actively going for lymphatic drainage massage? No.
  8. Follow up trans-vag sono scheduled for 8/27.

Updated Supplement List



Approximately  8 a.m., taken with a hot cup of coffee:
Supplement
Issue for which it’s being taken
2 Gummy VitaFusion Prenatal Multivitamins

2 Gummy VitaFusion Sugar Free Fiber Chews
Colon health; Impactions
Omega-3 1400 mg, 1x  (ratio: 647 mg of EPA and 243 mg of DHA) 
Inflammation; heart health; anti-oxidant/anti-inflammatory
Colace 200 mg (1x)
Impactions
Alpha Lipoic Acid 250 mg, 1x (unless proteinuria issue resurfaces)
Kidney health/proteinuria; Insulin resistance; anti-oxidant/anti-inflammatory
Milk Thistle 300 mg, 1x
Insulin resistance; fatty liver syndrome; anti-oxidant/anti-inflammatory
CoQ10 50 mg, 1x
Heart & skin health; anti-oxidant/anti-inflammatory
Grape Seed Extract, 100 mg, 1x
Heart health; anti-oxidant/anti-inflammatory
Relora, 300 mg, 1x (Magnolia officinalis bark & phellodendron amurense bark)
Elevated cortisol; Craving control; Improved sleep
400 mg Magnesium (oxide), 1x daily (sometimes boost to 2x during menses)
Colon health; impactions; cramps; Improved sleep
400 mg Calcium Citrate
Post-op RnY compliance
B12 (sublingual spray), 2500-5000 mcg
Post-op RnY compliance
Right before leaving the house:
Aldactazide 25 mg.

 Approximately 10:30 a.m.:
Supplement
Issue for which it’s being taken
Cherry Rich brand Cherry Extract, 500 mg
(Borderline) Gout;  Osteo-arthritis; joint pain;
anti-oxidant/anti-inflammatory
Biotin, 10,000 mcg
PCOS related hair thinning
D3, 2000 IU
Post-op RnY compliance
400 mg Calcium Citrate
Post-op RnY compliance

12 Noon (taken with a 6 oz V8):
Supplement
Issue for which it’s being taken
VitaFusion Vitamin C, 240 mg
Facilitate iron absorption; anti-oxidant/anti-inflammatory
Feosol Iron 325 (1 tablet)
Post-op RnY compliance

2 p.m. (ingested at same time as my bone broth):
Supplement
Issue for which it’s being taken
Vitafusion CholestorWell (400 mg plant sterols)
Heart health; cholesterol; anti-oxidant/anti-inflammatory
Vitamin B1, 100 mg, 1x (which I make sure not to take at same time as coffee)
Adenomyosis pain; Improved sense of well-being; Improved sleep
Vitamin B2, 120 mg, 1x
Migraine abatement; Improved sense of well-being
Vitamin B6, 100 mg, 1x
Kidney health/minimizing oxylative & oxidative damage; Improved sense of well-being
Joint Support Complex (Ratio: Glucosamine HCl 1.5 gm, MSM 300 mg, Evening Primrose Oil 30 mg, Boron Citrate 1.5 mg)
Joint health; Pain management; bone density; prostaglandin health

6 p.m., taken at same time as protein shake (23 gm of protein):
Supplement
Issue for which it’s being taken
200 mg Calcium Citrate
Post-op RnY compliance

8 p.m., Before dinner:
Supplement
Issue for which it’s being taken
Joint Support Complex (Ratio: Glucosamine HCl 1.5 gm, MSM 300 mg, Evening Primrose Oil 30 mg, Boron Citrate 1.5 mg)
Joint health; Pain management; bone density; prostaglandin health

8:30 p.m. After dinner:
Supplement
Issue for which it’s being taken
1 Berrydophilis probiotic chew 
GI “biome” health
Right before bed:
Quinipril, 80 mg
Items highlighted in red are new additions to my line up.

Wednesday, July 22, 2015

Status Report

Perhaps it's the summertime doldrums, perhaps something else entirely. Who knows. I've been struggling with negative thoughts and depression and anxiety for a while. And in a way, I feel like I'm on a sinking ship, and I'm tossing anything and everything overboard just to stay afloat.

Even though I have been pretty good about my little tweaks and rewards, as it pertains to the bevvy of appointments I find myself attending, and make sure I plan something ELSE in that day, something fun or interesting, almost like a lemony sorbet, to cleanse my day, as if the REAL purpose of my being in the city wasn't for the appointment/s, but for something FUN.

I have even thought outside the box at work, and bought a folding chair (like ones you see at sporting events), so I can sit outside for a half hour and get some sunlight and fresh air while I crochet and decompress. In the course of doing so, I have been getting some positive attention, and it breaks up my day (at least on the days I do this, which is to say, I am not doing this EVERY SINGLE DAY). This helps, but not enough.

I haven't gotten to the point where I'm sitting at my desk sobbing silently to myself, but I'm blue. And I feel trapped and the direct opposite of empowered, and this isn't where I wanted to be at this point in my life. I guess this is what a mid-life crisis feels like. I guess.

Now getting back to the sinking ship and tossing things overboard... In line with my philosophy "keep that which is useful, and discard the rest," after careful consideration, I've decided to discontinue going for my annual check ups with the bariatric surgeon. Bottom line is, I'm not getting anything useful out of it, it is a pain in the ass to get there, and while he was a good surgeon, his follow up such as it is, is lacking.

I feel I wasn't adequately prepared for how radically my bathroom habits would change.
I feel his nutritionist (who I dumped first opportunity I could) was outright lacking and judgmental.
I feel I didn't get the best bang for my buck or efforts, as in the end, he never put the mesh around my pouch, maximizing my weight loss.
I feel that he just wants me to shut up, as was evidenced by my last appointment last year, when I said I was depressed, rather than run a full panel on all my vitamin B levels (instead of just my B12), he was too quick to write a Rx for phentermine--which, is contraindicated, due to my hypertension. I feel he wrote that just to shut me up.

As a result of him writing that, I chased my tail yet again, and arranged an appointment last summer to see a psychiatrist, hoping perhaps we could test my neuro-chemistry to see WHAT EXACTLY is "off," rather than jump through a series of hoops, trying, unsuccessfully, one anti-depressant or anti-anxiety medication after another, just to be informed "We don't do that." Something so simple, a test vs trying one medication after another, just seems futile and ridiculous, and makes me realize that whatever the solution is, all I know is, it won't be found in a yellow pharmacy bottle.

So, I cancelled my appointment in June--and here it is a month later, and no call, not even an email from the NP (of whom I am chummy). 

A sign that I know things are bad for me, mood wise or depression or whatever THIS IS, I want to dump my beloved endocrinologist, who I have seen religiously every quarter of every year for the last eleven years.  I feel I am now coasting on fumes until menopause hits. No baby for me. I feel I am an uninteresting patient. And last visit, he mentioned he wanted to see me lose a bit more weight, which of course, I had a triggery type reaction to it.  I'm just tired fighting the good fight. I wish I could shake this.

I mentioned this to my husband, and he thinks I am nuts for thinking of dumping the endocrinologist, and suggested to me, instead of going there quarterly, perhaps I should discuss with the doctor the idea of seeing him every six months instead of every three. From a metabolic standpoint, everything seems "managed," no radical changes from appointment to appointment. I was considering rescheduling the August appointment to October, which then would have pushed it to 5 months between visits. I think I'll just get off my duff, get my blood work done tomorrow, and keep my August appointment--as it's also on the same day as my kidney guy. 

I'll try to do something productive today, and see if I can find an adrenal specialist, to help me with the elevated cortisol issues, or perhaps some other -ologist to help me with my pain, which is no doubt driving the cortisol to be elevated. 

Between my physical pain, and my anxieties about my job, I just wish I could find some measure of contentment, and living a life that matters. Because at the moment, I feel like I don't matter at all.

Friday, May 29, 2015

Movie Reference/Pain Scale

Fleshing out an idea of equating pain (physical and/or mental), blood, etc, with a movie director's style to drive home the point of pain. So when a person asks, "How are you, or how is your pain today?" You can answer with the corresponding director's name.

What I've fleshed out thus far:

Tarantino: Stylistically excessive physical violence in a sustained and significant abundance. (When you think of torrents of blood, you think, "Tarantino.") 
DePalma Graphic, bloody
Scorsese Physically violent with excessive use of profanity 
Kubrick At times a sadistic spectacle 
Hitchcock Mentally/psychologically overwhelming, at times with dark humor 
Coen Brothers Stylized, brutal & bizzare humor with an almost rhapsodic arc in the trajectory of my pain
Spielberg At times gruesome or spooky, or downright violent, but more often than not, "recoverable" (some might say unremarkable) 
Allen, Woody Angst-inducing Wilder, Billy Often lacking sympathy; stoic 
Goldwyn, Samuel. Above all else, a happy ending. (Superficial for the sake of appeasing others).
Capra Anti-cynicism. Feels unrealistically good.

Thursday, May 28, 2015

Topamax: That didn't last long!

Despite the obvious blood pressure lowering benefit of the Topamax, I couldn't justify being on it much longer. It truly lobotomized me, and did just about ZERO to deal with the chronic low back pain. And when my monthly menses related migraine hit, it did NOTHING to thwart it. So, in the end it wasn't what I deem "value added." 

On May 11th, I saw my neurologist for a follow up. And he asked me how I felt. I replied, "This is how it's going to go down. I'm just going to do scatter-shot "word vomit" until you cry uncle." He nodded yes, and he let me ramble for what seemed like five minutes as I ticked off every observation I made, every side effect from the drug pretty much, and when I said the word "anhedonia," I felt as if I were a contestant on that old 1970s game show "Password," and "... the password is: ANHEDONIA." He said, "you can stop now." 


So, back to square one. And he cycled back through, "What about Cymbalta?" And I think it's time I find someone else to deal with the chronic low back issues. A friend was mentioning an integrative medicine guy in Stamford (a scant half hour from here), and I need to research more.

However, on the MIGRAINE FRONT, at the suggestion of my neuro-opthalmologist (in April) I started taking vitamin B2 (to be added to my usual line up). Perhaps it's coincidental, or perhaps my baseline chronic low back pain and uterine pain ECLIPSED my migraine pain this month, or perhaps the vitamin b2 actually worked? I don't know for sure. But for the month of May (crosses fingers, knocks wood, and doing darshan to a picture of Hanuman), so far, so good: No. Migraine. (Yet.)

Note: At current writing, I have been off the Topamax for 17 days.

Stay tuned.

Thursday, May 07, 2015

Topamax Chronicles: Nearly a Month Deep Into It

I figure I better jot my thoughts down now while I am thinking of it, or else the ambivalence will creep in and I won't give a fuck, and the thoughts will be lost in the ether... or the thick trap of molasses which is where all my thoughts and emotions and intentions seem to go these days.

Without fail, I have been taking my 25 mg of Topamax daily, which was dispensed for my chronic low back pain. And just when I thought it was starting to help, my husband and I went on vacation and within the span of the first 24 hours of our trip, I felt like it set me back so much pain-wise, it'll take me a while just to get back to where I was. 

And I do believe it was helping, to a degree, but there's a cost attached to this. I will try my best to articulate this. This medication makes me paranoid, and just when the paranoia starts to crest, the ambivalence kicks in, and then I just stop giving a fuck, and the paranoia is beaten into submission for a while. This is a constant ebb and flow.

I am someone who lives with melancholy or dysthymia. I will say categorically this medication has not helped AT ALL in this department, if anything, it has made me just want to die. Sure, suicidal ideation abounds, but no compulsion to act on the thoughts. 

And yet, in other ways, stress has been lessened. At work, I don't know. It seems "different." I wouldn't say warm and fuzzy, but definitely I feel differently at the office. Sure, I still don't want to be here, but I find myself a bit more outgoing at the office than has been my norm for the last 12 years. I'm definitely more relaxed here.

My neurologist is the one who prescribed the topamax for me; however, my endocrinologist thinks we might have figured out what is driving my cortisol and dhea imbalance, and it looks like the culprit is my chronic pain issues. Chronic pain = stress and chronic stress = spikes in cortisol which then = hypertension issues. Nearly one month into this experiment, and my bp registered 126/62, then 122/70 at the second reading. The suspicion is the pain cycle contributing to the hypertension. 

My thoughts get trapped in the mire, a thick molasses trap in  my brain. My intentions suffer from the ambivalence. All I want to do is sleep. The medication has taken away my drive to do a lot of things with verve. I no longer have this insatiable desire to cook or crochet, and most nights I find I am dozing off in front of the t.v. within an hour after dinner. All I want to do is sleep.

Another side effect: I find my fingertips and tips of my toes to be numb. They feel numb like callouses, but I don't have thick callouses. And I feel a similar weirdness on my lips, slight, but it's there.

This week was my period. And while I did not have a migraine, yesterday I might as well HAVE had one. I felt out of control. Miserable. Achey. Head hurt, but not quite a migraine. So let's just say it did nothing to stave that off. And I was afraid to take a Frova while at work, thinking it might incapacitate me. And I was afraid to take an Allegra until I spoke to my pharmacist--seasonal allergies are also in play this week. 

So I'm rambling. Time to end this post.

Friday, April 17, 2015

Current Supplement Line Up

First Blast (Along with a hot cup of coffee):
2 Gummy VitaFusion Sugar Free Fiber Chews
Colace 200 mg (1x) 
Omega-3 
2 Gummy VitaFusion Prenatal Multivitamins
2 Gummy VitaFusion Vitamin C
Feosol 325 (1 tablet)  
Alpha Lipoic Acid 250 mg 
Milk Thistle 300 mg
CoQ10 50 mg

Right before leaving the house, I blast 1-2 KAL Brand B12 spray and take my Aldactazide 25 mg.

Second Blast:

1 Cherry Rich brand Cherry Extract, 500 mg

Vitamin B1 (Thiamine), 100 mg, 1x (which I make sure not to take at same time as coffee) Note: Endocrinologist says that I could go up to 200 mg daily if I wanted to do so.
Vitamin B6, 100 mg, 1x
Biotin, chewable, 10,000 mcg
Probiotic chew 

Third Blast:

 **Boron, 3 mg, 1x daily 
Magnesium 400 mg, 1x daily *I boost to 2x daily during menses, helps w/muscle cramps
2 Gummy VitaFusion Calcium chews (500 mg total) (Or, I might take 600 mg of Citrical Petites, in a 400 mg dose, then a 200 mg dose later)

 Grapeseed Extract, 100 mg, 1x

Before dinner, I take:

25 mg Topamax

Fourth Blast (1/2 hour after dinner, with coffee):

2 Gummy VitaFusion Calcium chews (500 mg total)
2 Gummy VitaFusion Sugar Free Fiber chews
Alpha Lipoic Acid 250 mg
Milk thistle 300 mg



Right before bed:
Quinipril, 80 mg

Items highlighted in red are new additions to my line up. 

**Considering swapping the boron out for 400 mg of riboflavin.

Topamax Chronicles: It's Deja Vu All Over Again

Neurologist is perhaps more vexxed than I when it comes to the topic of my pain. I've come to accept it, with a somewhat silent resignation that it will be an omnipresent... presence in my life.

He opened our discussion with revisiting the idea of Lyrica or Neurontin, both I nixed for their obvious side effects. For me, it's always been a matter of quality of life. That the quality of my life with the pain is better than the quality of my life on these pain meds, which end up having some pretty potent, unpleasant side effects.

I'm still suffering the effects of the last failed experiment of me trying out Cymbalta, which I went on with such hope of helping my pain and my anxiety/depression, only for me to be even worse off than before, and with a 7-10 lb weight gain, which I haven't managed to shed.  (As if I weren't depressed enough, to begin with, right?)

So he circled back and said, "What about trying Topamax again?" Initially I bristled at the idea because, HELLO, I do not have a convulsive disorder and this is a medicine specifically for that! And I have tried it in the past, and had problems when the dose was titrated up, but remembered initially, the lower dose kept me blunted and I didn't give a shit, and I couldn't recall if it helped my migraines all that much.  Though, looking around on PubMed, there is plenty of information in support of it for use for chronic low back pain which is another "star" in the constellation of pain issues I have--namely the spondylolisthesis I, and herniations and arthritis. 

And well? I am also not-so-secretly hoping it helps with the pesky weight issue. I really want to continue making progress. I've been stalled for years. I want to continue moving forward.

So. Resigned with the paucity of choices for me, and placing full trust in my neurologist, I agreed to give Topamax a try one more time. A month should be a good enough time to see if there's merit. But then what? Do I stay on this for the rest of my life? I'm less than enthused at this idea.

Yesterday I saw my neuro-opthamologist for the optic nerve druzen. I get this monitored every couple of years, and he seemed concerned about my being on Topamax (of course! who WOULDN'T be upset about the idea?) and suggested I look into riboflavin (and another herbal supplement, which I cannot recall--perhaps feverfew?). So I am considering adding 400 mg of riboflavin to my daily intake. Not sure if I will shift other things around. My 3mg of boron is poised to be 86'd if need be. I am not 100% certain there is 100% merit in keeping it in the line up, though my reasons for having added it to the line up were (and continue to be) sound.

To date, I am about eight days deep into the Topamax, thereabouts. I take it in the evening, so the bulk of the mind scrambling wonderment happens after dinner. And I nod off. And pretty much by the time I wake up in the a.m. and get ready for work, I am in a cloud, but functional. Barely. And if I didn't have my husband around to get me out of bed, I honestly don't know how I'd be able to get going every day.

Friday, April 03, 2015

Pain Chronicles: Persistent RLQ Pain, Part Deux

Saw my gynecologist last week for my annual exam. In passing he asked if there was anything else cooking, and I mentioned the RLQ pain. He ordered an abdominal CAT with contrast, to rule out chronic appendicitis. Pain is near McBurney's Point, so it's plausible. It's plausible it could be a kidney cyst or stone, too (especially given I've had blood in my urine). Could be something with my cecum, too. Not outlandish to think something's up with my gut flora.

Hurry up and wait.

Friday, January 09, 2015

Before I Forget

Last Friday, I was able to speak with the RN that was at my dad's former cardiologist's office. Cardiologist has since retired and is otherwise unavailable to field my questions. And I lucked out (such as it is) that dad's records haven't been purged/destroyed, given it's now six years since he's passed away, and since he was last a patient of the cardiologist.

The nurse informed me that according to the records, there was nothing there to indicate that dad was ever diagnosed with, or was suspected of having polycystic kidney disease.

I find this information inconclusive at best, and not iron-clad, given the trajectory of dad's health and the inescapable question of the mitral valve prolapse, which his maternal aunt also had (and died from, after surgical replacement).  I am convinced he was never thoroughly screened, and in part, I suspect that this negligence directly impacted and shortened dad's life span.

Friday, December 26, 2014

Zero Summing Concern

On December 19th, I had a pelvic ultrasound (regarding the adenomyosis and my PCOS), and I had an abdominal ultrasound to follow up on my NAFLD.

Sharing a crop of the report of findings:


So while, YAY! I did have that fleeting moment of relief to know that there is no "fatty infiltration" of my liver and quite possibly have reversed the NSFLD due to the weight loss, that moment of YAY then morphed into concern about my kidneys, as the multiple cysts coupled up with my hypertension (and headaches, and intermittent flank pain) might be harbingers of ADPKD.

While I have been accused by some to be a hypochondriac, I view myself as a stoic and a pragmatist, and I like to "Prepare for the worst, but hope for the best," with more emphasis on the former than the latter, to be honest. I have been reading up on ADPKD to familiarize myself with this, and here's a crop from the Mayo Clinic's site, which was kind of sobering, regarding possible complications:

And on PubMed, I found this information (and I fit the profile of a PKD1, given my bouts with proteinuria & hypertension):

So, *IF* I am ultimately diagnosed with this, I can still anticipate growths in my liver, among other things. And given my Factor Five Leiden Mutation (plus the additional, possible diagnosis of ADPKD), it looks like it puts me at an even higher risk for a stroke or aneurysm. But the most upsetting thing for me to think about is that mitral valve issue (well that, plus enormous, non-functioning kidneys, and possibility of dialysis etc).

While I do not believe my dad was ever officially diagnosed as having it, I believe he fit the profile. I believe his mom had it (and died from it) and his mom's younger sister (who passed away one year ago from TODAY) no doubt had it. 

In 2008, dad had his mitral valve replaced (and subsequently died, due to his overall health being so poor--and I believe his official cause of death was cardio-pulmonary, and renal failure). Last year, his aunt had her mitral valve replaced (though at close to 82 vs my dad's 67).  

There is no cure for this, if they do diagnose me as ADPKD. There are no supplements for me to take to "hack" or slow the progression. The only thing I can do is try to better manage my hypertension, try to balance out my diet a bit more (even though post op WLS, the focus is protein), try to cut down my caffeine intake, and possibly try to get more active (the latter of which has been something I've been working on for a while now, as I've been focused on better managing my pain issues).

Death awaits us all. No one gets out of life alive. But I would like to have some measure of control over the length and quality of my life, and try to minimize whatever suffering awaits me further down the road.

My endocrinologist was the one who ordered the ultrasounds to be done. And is on vacation until after the first of the New Year. I had my internist CC'd on the ultrasounds, and he provided me a copy of the reports, which I promptly scanned and sent along to my renal guy, and to my gynecologist. And I have made a hard copy for my cardiologist who I will be seeing in February. 

Perhaps I should mention this to my neurologist as well, since I've been under his care for migraines, which run in tandem with my menses, however, I'd feel more comfortable if we ruled out cerebral aneurysm. 

In the interim, I will probably contact my dad's former cardiologist to find out if dad was ever diagnosed as ADPKD (which would be useful information on the differential). And perhaps I will try to reach out to my aunt's son (perhaps sometime NEXT week, not today--I'm sure today's date is still raw for him, as it's the first anniversary of her passing), to find out if she was ever diagnosed with ADPKD.

And other than that, hurry up and wait.