FOOD SHOPPING IN THE TIME OF COVID-19*

Or: What I Learned from Two Years of Prolia-driven disability!

Note: This information is also posted at:
 https://joanscovid19blog.blogspot.com/2020/05/food-shopping-in-age-of-covid-19.html.

Further updates on this and other things pertaining to COVID-19 are posted at https://joanscovid19blog.blogspot.com  as well.  

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These food sources -- mostly with Chicago area people in mind --  may be convenient for those sheltering in place!

-- Amazon (www.Amazon.com) 
-- Imperfect Foods (www.ImperfectFoods.com)
-- Daily Harvest (www.Daily-Harvest.com)
-- Fresh Picks (www.FreshPicks.com)
-- Freshly (www.Freshly.com)

-- Sprinly (www.Sprinly.com)

-- Veestro (www.Veestro.com)

-- Splendid Spoon (https://splendidspoon.com)

These are all sources I have used and I appreciate them a lot -- especially now!  Check to see if they serve your location.

1. In general I prefer using PayPal for online shopping.  Where CC is required I keep all online purchases on one "dedicated" card so it's less hassle if it gets frauded.

2. Be flexible.  Stores may be out of what you want but may have other choices to deliver to you.

3. Write dates on cans & boxes with marking pens so you can consume the oldest items first.

4. Leave realistic delivery instructions.  Check your building's requirements.  

5. Websites I've used.  The four websites listed here have worked best for me since my Prolia disaster made shopping quite painful.  

(www.JoansBackboneDisaster.com)

6. I've used Instacart but I've found the stores here work better for me.  But check what Instacart offers in your area! 

7. Keep a list of what you got where so you can easily find your faves again!

Here is more detail about each of the sources I've used: 

A. Amazon. www.Amazon.com

1. I know we all love to hate Amazon, but for now, Amazon can be helpful.   

2. Sign up for Amazon Prime.  The price you pay for this feature will likely be offset by free deliveries of many things plus speed, convenience, and selection.

3. Explore the many Amazon food shopping services - Amazon Fresh, Amazon Whole Foods, Pantry Lists, etc.  Most offer free delivery for orders over a certain price, and/or for Prime customers.   

4. Consider buying staples by the case. 

5. Get an idea of what's available by entering the name of food you want and seeing where Amazon takes you!

6. Keep a list of where you got things you especially like so you can find them again.

7. Keep lists of orders "in progress" and pay when you reach free delivery levels.  And keep an eye out for online specials.

I mostly shop Amazon's Whole Foods list, but right now (April 9, 2020) they are not even giving delivery slots. Check back for delivery windows.

Here's now Amazon is handling food now: 
https://blog.aboutamazon.com/company-news/how-amazon-is-helping-customers-get-groceries

I was happy to see that (at least. according to Forbes), Amazon is not "COVID-teering" (the word I just coined for companies making unfair profit from this crisis).
https://www.forbes.com/sites/moorinsights/2020/05/04/amazon-neither-winning-or-profiting-from-covid-19/#2f58aa706793

B. Imperfect Foods.  www.imperfectfoods.com  
See if they this company delivers to your area. They offer organic and conventional foods, raw and prepared, vegan and animal-sourced, all considered "imperfect" because of being close to expiry dates (but not beyond), or from broken lots, or too oddly sized or shaped for supermarket display.   

You can sign up for weekly or bi-weekly delivery on a "Book of the Month Club" model, so you need to let them know in advance when you don't want a box. You can also make some choices and list foods you never want.   More details at their website. 

C. Daily Harvest https://www.daily-harvest.com/app/home
Daily Harvest delivers prepped produce, mainly vegetables and fruits, in measured containers, for healthful smoothie to which you only need to add liquid and blend. (They also deliver salads, soups and some other items in frozen containers).   

I have a plan were I get four or five smoothies and one or two soups every week.  Since standing for a long time doing food prep is hard for me, this is truly a healthful luxury!  

This is a "Book of the Month Club" type of service.  You can always skip a box or change the contents, but if you do not do so by their deadline you'll get what they send you!  But check it out - some offerings -- soups, harvest bowls etc. -- are higher in sodium than I'd like, so these are just occasional treats!  

D. Fresh Picks.  www.FreshPicks.com

This is a Chicago area company.

If you are in the Chicago area you may know Irv and Shelley's Fresh Picks from the summer produce markets.   Besides local organic produce. they sell some prepared foods and some animal based products, many from small local companies.  It's a nice selection and worth a look.

They offer weekly deliveries of either their pre-assembled boxes (best prices) or your selections.  

You'll get an e-mail about what is offered each week but you can set it up so they only deliver when you place an order.  

Your produce may arrive in a large insulated bin which is good if you won't be home.  (I ask for delivery in a big plastic bag so I don't have to worry about leaving the bin out for them to pick up.  Ask them for details on this).

E. Freshly (www.Freshly.com)

Freshly offers complete meals in containers ready to microwave and enjoy.  The are gluten free. For other sensitivities you can read the ingredient list on each selection.  Delivery is weekly, and these meals are intended to be kept in the refrigerator, not the freezer.  You can select a 4, 6, 9 or 12 weekly plan, with prices lower per dish for the larger plans.  

Deliveries come in large boxes with freezer packs, which likely accounts for the high price of this service. 

You can keep the same selection week after week, switch selections, or opt for no delivery that particular week.  (If you don't opt out, however, you'll get a delivery automatically.) 

I find that one serving serves me well for two meals especially if I add a salad.   These are on the pricey side but well done.   

F. Sprinly (www.Sprinly.com)

Sprinly offers ready to heat and eat meals that are vegan and gluten free.  While there is some choice of number of meals and frequency of delivery there are just six choices of meals each week.   They are good, and half a meal serves me well. 

G. Veestro (www.veestro.com)

Gluten free and Vegan -- they offer several plans.  Heat and Eat meals with enough for a week delivered at one time.  They arrive frozen and are to be kept frozen until ready to use. 

H. Splendid Spoon (www.SplendidSpoon.com)  

Gluten Free Vegan.  Wonderful smoothies!  The best yet, and very good soups and stews to just heat and eat.  Easy to skip or unskip a week. 

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*Much of this information is also at www.JoansBackboneDisaster.com as I compiled much of it originally because it was physically difficult for me to shop in person. 

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PROGRESS NOTE UPDATED TO JANUARY 2020

Progress Note -- Updated to January, 2020.

Nearly two years since my Prolia disaster the bones are healed (albeit not like before) and I have gotten some of my life back.  But unless I am flat on my back (or lying on my side or floating in water) the pain remains.  Standing or sitting for more than an hour without adequate support is painful and after another hour becomes nearly unbearable.   

The resulting inactivity left me much weaker than before, although I try hard to stay as active as I can, despite the pain.  I exercise regularly under the supervision of a physical therapist. 

I remain quite limited in what I can do or even want to do.  Do I join family and friends for an evening out?  Can I handle the pain this invariably brings?  Do I travel (as I did regularly prior to this disaster)?  Do I have the strength? Is it worth the pain?    

Here's a quick recap of the past few years: 

Here I am in the winter of 2018, just weeks before my Prolia disaster. OK, I'll say it: for an 81 year old I thought I was doing pretty well!

That didn't just happen  -- it was in part the product of attention to a healthful diet and the right kind of exercise -- as well as decent genes. 

I was enjoying two weeks in the Cayman Islands, climbing up and down the pier ladders, (quite a climb at low tide), and, with my fins, mask and snorkel, spending hours observing fascinating marine life, and handling flights and luggage with ease.   

I didn't know that just weeks later, this part of my life would be over.  There I was "81 going on 60."  Now I'm "83 going on 160," much too disabled for this kind of travel and in pain a good deal of the time.  

The picture below is how I looked just a few weeks later, not long after three vertebrae fractured because of the brief Prolia delay resulting from what I would call a "medical clerical error."  

You can clearly see the spinal curvature and swollen midsection, and the pain and weakness made many activities of daily life painful and/or extremely difficult. 

Here is how I looked in September, 2019, after well over a year and a half of pain and disability, and many months of physical therapy as well as exercise at home. 

There is still some curvature, but it is less severe.  And now I can be upright -- sitting or standing -- for an hour or two without too much pain.  However, after about two hours the pain is generally quite severe. 

My body shape is still quite different, in part because of the major loss of height in my midsection, and in part the likely result of inactivity and inflammation.  So while I am better than a year and a half before, before, I still have a long way to go.

Now in the just before the New Year of 2020,  I drive my car once a week (mostly to keep the engine going, from indoor garage to indoor garage or easy nearby parking).  I'm seriously thinking of letting go of the car this spring, but that's a hard decision -- having spent well over 60 years behind the wheel.    But taxis and Uber may make more sense at this point, although I would very much miss the flexibility of driving.

I still cannot handle air travel.  The kind of travel I loved two years ago would be like taking a trip to the Moon today!  

Even going downtown to the physical therapist, with whom I'm working so hard, must be in a cab for a distance I used to walk or take the bus.   

I've cut my hair quite short -- it was getting matted from so much time lying down -- and wearing "normal" clothes is still impossible. Thank goodness for soft-waisted yoga pants which don't add to the pain of my inflamed mid-section!

I do as much as I can online -- including routine grocery shopping -- as handling bags of groceries is difficult now. I am just grateful that I now can stand long enough without too much pain to prepare my own meals and am no longer confined to delivered food or "TV dinners!" 

But, as noted in another post, I need to have a broken tooth extracted which, thanks to Prolia, I may not be able to do without fracturing my back or my jaw.  Read more at the post "A Cruel Prolia Related Choice; Must I choose a Toothache or a Backache!"

http://www.joansbackbonedisaster.com/2019/12/a-cruel-prolia-related-choice-must-i.html

And all of this because of a corporate and professional failure to warn that even a short DELAY in receiving a Prolia shot could result in painful fractures wiping out years of effort to promote and preserve health. 

That is why I write this blog:

1. To warn others that once on Prolia, it may be impossible to get off it safely!  

2. To warn that once on Prolia, even a short DELAY (a word I could not find in the Prolia labeling for doctors and not until quite recently -- in 2019 -- in any information for patients) could leave you with the kind of fractures that brought my healthy, active life to a screeching halt! 

3.  To urge anyone considering Prolia to carefully research this drug before making a decision. 

It's too late for me, but if you have not started this drug it is not too late for you, so consider your options carefully!

KINDRED SPIRITS ON FACEBOOK

A truly helpful friend told me about Facebook groups actually devoted to Prolia debacles!  Who knew?  I certainly didn't!

There is no way to establish the veracity of these posts, but when I looked at some of these pages I thought "Wow!  I could have written these posts!"
They so precisely described my own terrible experiences with this drug.   

So I posted too - just a fraction of what I'm dealing with because of fallout from the Prolia bombings I have endured.   I am not editing here, but simply cutting and pasting what is already online.

Here are some of those Facebook Pages.   
If you know of more please let me know!

1. Prolia side effects and complaints, effects secondaries et plaints.  2.3 k members.
https://www.facebook.com/groups/988541067970186/    

August 8, 2019

"WELCOME! If you are looking for details of the many frightening side effects caused by Prolia - which many of you will have had your doctor deny - look at the latest Monograph published by the drug's manuacturer itself. This alarming document details most - but not ALL - of the drug's side effects, as well as warning users that the manufacturer does NOT know all the side effects and are still discovering them. That document is all the warning you will ever get from Amgen, so be sure to read it - and make sure your doctor reads it too! (Monograph is in the Files section and also here"

[Note: Here the author of this post gives a link to the Amgen Monograph for Prolia]

https://www.amgen.ca/products/~/media/1E79AEE7D94340DF88C3D97F5BB897C3.ashxn?fbclid=IwAR2EOzJH3t7eyLBd9xd1kBTA3SejrnE5s6ZvV6GFEeKy1WzCJcqRCZNGe6s

"Familiarize yourself too with the crucial information in the Files about rebound fractures and the damage Prolia does to bone remodelling/bone turnover. These files are from scientific medical sources and investigators...not unreliable websites and dodgy sources. These are medical researchers around the world, sounding the Prolia alarm!

Then! Join in the conversation - make friends - share your experiences - ask questions and give answers! There is a wealth of information here."

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2. Prolia (osteoporosis treatment) discussion group.  1.7 k members. 

https://www.facebook.com/groups/1430246540524400/about/

"This group is for the expressed purpose of discussing the osteoporosis treatment Prolia and your personal experiences with Prolia. Unless you are a physician, no member has the right to suggest whether another member should or should not take Prolia. This group is only for folks taking Prolia or considering taking Prolia. (NOT for ex Prolia Users)"

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3.  Multiple Vertebral Fractures after Stopping  Prolia   471 members 

Group created May 13, 2018

https://www.facebook.com/groups/1652575684796609/

"Group created to discuss on the international level the possible multiple fractures and rebound effect after stopping 

Denosumab/Prolia." 

"Scientific information:

https://www.ncbi.nlm.nih.gov/pubmed/26694598"

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PROBABLY BEST LEFT UNPUBLISHED BUT I'M PUBLISHING IT ANWAY!

This is probably best left unpublished but I want to put down on paper.  Some of this is repetitive of matters discussed elsewhere in this blog.  Sorry about that!  But it goes more into my personal experience with this body-breaking debacle, and especially my experiences with University of Chicago specialists I will call Dr. A. and Dr. B.!

I had been receiving Prolia shots twice a year from Dr. A. at the University of Chicago since 2012.    I was always on time for these and even built any out of town trips I might take at those times around these shots so I would get them on time.

But when my January, 2017 appointment to see Dr. A. and get a Prolia shot at the University of Chicago was cancelled because of Dr. A's retirement, the schedulers would not make an appointment for me to at least get my next Prolia shot when it was due, because they could not give me an appointment beforehand with the new doctor, Dr. B., who was already heavily scheduled.     

The only appointment they could make with the new doctor, Dr. B. was months ahead, and the fact that I had been receiving Prolia shots there every six months for the last four years seemed to make no difference to them.   

I thought they knew what they were doing. They didn't.

My fractures occurred a few weeks after that cancelled January appointment.  

I was finally able to get a Prolia shot on March 16. 

When I finally got to see Dr. B. around that time I was still in terrible pain but I was able to get there. 

When I told her what happened her response was:  

"You missed your Prolia shot!"  

She said this in a way that seemed to imply that missing the shot was my fault.  I couldn't believe what I was hearing.  Not a word about the role of her clinic at the University of Chicago in allowing this to happen!

In a subsequent appointment with Dr. B., several months later,  I asked her if she could help me find resources to help me deal with the fallout from these painful fractures, and perhaps refer me to physical therapy.  Her response was that she thought there was a physical therapy place, "maybe on 53rd Street" but could offer nothing more, and certainly did not offer to try to help me find more information.    

It was clear that as far as the University of Chicago was concerned, rehabilitation following the my injuries sustained because of their failure to make it possible for me to get Prolia shots on time was of absolutely NO concern!

At last, with the assistance of my chiropractor, I was able to locate a Physical Therapist who has given me a lot of help in recovering some mobility and ability.  Because of the COVID-19 situation however I'm not going downtown, but continue exercises on my own.   

Also, after some research and telephone calls (and NO help whatsoever from University of Chicago Endocrinology), I was able to self-refer to the U. of C. Pain Specialist who was helpful in reviewing all the things I do on my own, and lets me me know what is, in his view, safe and effective.   

(During all this time, and to the present day, however, I have not enjoyed one pain free day!    Fortunately I can get some relief lying flat on my back, but this is not how I want to spend the rest of my life.  However, with time and physical therapy and exercise I can be upright -- sitting or standing -- for about an hour with out too much pain.) 

But I have yet to hear a word of apology or guidance from University of Chicago Endocrinology about their role in letting this debacle occur in the first place, or in being unable or unwilling to help me find rehabilitative resources.

So this explains my ire when, the next time I saw Dr. B, looked at me with some surprise and said:  "Most people don't look so good after this happens!" 

And finally, when Dr. B. showed me a card she was going to give PATIENTS warning them to get their Prolia shots on time, without a WORD about how front desk was being trained to facilitate making sure her patients who required timely treatment, were being properly managed, that's when I left the University of Chicago Endocrinology service. 

The University of Chicago Endocrinology Service had every opportunity to help me and also to make sure that no one else had to go through this.  The former certainly never happened and I have reason to suspect that neither has the latter. 

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WOMENS' HEALTH NETWORK NUTRITIONAL REMINDER

In general I find the Womens Health Network and Dr. Susan Brown reliable information sources (even though they advertise products.)  

Here is their chart on the nutrients needed for strong bones, why you need them, where to find them in foods,  and additional information.  

This is also posted on their website below at *.  

* https://www.womenshealthnetwork.com/community/osteoblast/post/7-top-nutrients-for-bone-health.aspx?utm_source=osteoblast&utm_medium=email&utm_campaign=betterbonesblogwhn200510&utm_term=l12_headerimage&utm_content=all

A DOZEN RESOLUTIONS FOR 2020

1. Work hard in Physical Therapy and Pain Management to be able to stand or sit for over 1 hour w/o pain.

2. Fight depression even though travel, many family gatherings, outings with friends and many other joys of retirement are now out of the question. 

3. Let friends and family know why there has been this drastic change in my ability to participate in these events, so they know I'm not just avoiding them! 

4. Keep urging Amgen to give needed warnings about Prolia. I understand they recently added the word "delay" -- October 21, 2019 is what I was told -- but I can only find that in their "patient information," and I do not see it in any of their professional  "product labeling."   And it certainly is not highlighted anywhere! 

5. Try to ignore the pain of a toothache (from a broken root) that cannot be treated for many months (if then) because of Prolia.

6. Share with my health care providers what happened to me so they can see first hand how Prolia can ruin a life. 

7. Demand that my prescribers of Prolia 1. INSTRUCT SUPPORT STAFF of the importance of patients receiving Prolia ON TIME and 2. Set up office systems to assure this. 

8. Extend friendship to the many people on medical social media writing about their own lives ruined by Prolia.

9. Appreciate the health care professionals who are helping me during a slow and painful rehabilitative process when the Prolia prescribers essentially abandoned me, and Prolia’s “information” line, (800) 772-6436, had nothing practical to offer.  

10. Channel that angry energy to stop Prolia from claiming still more victims!

11. Keep on trying to end this nightmare, by finding a SAFE way off Prolia.  The only advice Amgen has offered me so far is to "get on another drug" (without specifying which one!)   This is a bit like asking someone to jump into a safety net when the last safety net had big holes in it!   

12. Try not to throw a brick through the TV when they show Amgen's ads for Prolia!  And now Amgen is advertising newer osteoporosis drugs. So I ask you: Would you buy a used car from this dealer? 

My Resolutions for New Year 2020

1. Work hard in Physical Therapy and Pain Management to be able to sit or stand > 1 hour w/o pain.

2. Fight depression as travel, family gatherings and other joys of retirement are out of the question. 

3. Warn friends and family to avoid Prolia like plague.

4. Keep urging Amgen to give needed warnings about Prolia. (They recently added the word "DELAY" to some patient info but I still don’t see it in their official product labeling).

5. Try to ignore the pain of a toothache (from a broken root) that cannot be treated for many months (if then)  because of Prolia.

6. Share with my health care providers what happened to me so they can see first hand how Prolia can ruin a life! 

7. Demand that prescribers INSTRUCT SUPPORT STAFF to warn patients unfortunately on Prolia to get their shots ON TIME. 

8. Offer friendship to the many people on medical social media whose lives have also been ruined by Prolia.

9. Appreciate those who helped when the Prolia prescribers essentially abandoned me and Prolia’s “information” line, 

(800) 772-6436, offered nothing but “ask your doctor.”

10. Channel that angry energy to stop Prolia from claiming more victims!

AMGEN FINALLY ADDS THE WORD "DELAY" TO THEIR PROLIA "MEDICATION GUIDE"

I call Amgen every week or two: 

1. To tell them how I'm doing after this Prolia disaster; 

2. To ask for any advice they might offer for restoring a workable, pain free body;

3. To urge these friendly reps never to go near that drug or let any of their dear ones go near it! (They all sound very nice).

4. To suggest they add the word "DELAY" to their product information instead of just words like "discontinuation" or "stopping." 

As to (1), (2) and (3) I usually get nothing useful. 

But as to (4) there was a recent change.  

The Amgen rep I spoke with today (handle "Aaron") told me that the word "delay" had been added to their information on October 2, 2019.   I asked him to send me this and he did so today, 12/30/19, via e-mail.  

While the word "delay" still does not appear in the main product labeling, it did appear appear in an attached document called "Medication Guide,"  where the text in the Warning and Precautions section includes the following: (bold italics mine) 

 Increased risk of broken bones, including broken bones in the spine, after stopping, skipping or delaying Prolia.

Talk with your doctor before starting Prolia treatment. 

After your treatment with Prolia is stopped, or if you skip or delay taking a dose, your risk for breaking bones, including bones in your spine, is increased. 

Your risk for having more than 1 broken bone in your spine is increased if you have already had a broken bone in your spine. 

Do not stop, skip or delay taking Prolia without first talking with your doctor. If your Prolia treatment is stopped, talk to your doctor about other medicine that you can take.

This included information I did not know - such as that having broken some vertebrae I am now at INCREASED risk for additional such fractures. 

I am also learning learning that length of time I've been on Prolia could also subject me to more problems, but there seems no way to escape the clutches of this medical monstrosity.  

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