Whew!

Two years after Richard Nixon lost the presidential election to JFK, he ran for Governor of California. He lost that race, too. At a news conference, Nixon famously said, “You’re not going to have Dick Nixon to kick around anymore.”  More than fifty years later, I say, keep swinging your leg. I am not going anywhere. As with Nixon, I am not a quitter. Or was that a crook?

I am reading your responses, even as I attempt to get past Chapter Nine, quicksand by any definition. Keeping up with a blog is tough enough. A book? Forget it. Why do we do this to ourselves? W. Somerset Maugham wrote voluminous short stories, many set in the South Seas. They featured Americans or, more commonly, Europeans, who had opted out and chosen lives of excess in beach communities. I have spent time with these stories, wondering, where did I go wrong? I have no answers.

My problem with the fantasy is that heat kills me. This summer has been oppressive.   A normal summer combines with climate change, and, voila, dust off the wheelchair. I barely can walk. This time summer is bad, really bad. Mr. Maugham, you are in danger of losing your audience. Spend time outdoors, then try to read. Concentrate. Write. Dream on.

 

 

49 Responses to Whew!

  1. Christopher August 31, 2016 at 3:51 am #

    Keep walking, it has power in it’s deceptive simplicity.

    Someone told me once, “When you find a wall blocking your path… it means you walked through the wrong door, Magoo. Turn around, go back through the house, and walk out the front door this time.”

    No one ever said it was easy. But it sure is gosh-darn interesting when things go kablooey.

    • richarde m. cohen August 31, 2016 at 8:16 am #

      Christopher-

      Good to hear from you. Where have you been? Where have I been? I hope you are doing OK and look forward to exchanging ideas again.

      Best,
      R.

    • Roxanna September 5, 2016 at 2:19 pm #

      Richard I am a big fan of Merrdith butt appreciate you documenting your life with MS. I am a 31 year old female who was diagnosed this past DEcember after a nasty bought of optic neuritis. Over the course of wk my vision went from cloudy to only being able to see peripherally. My vision was 20/600 and I couldn’t see the big E on the chart. I was treated at NYU in NYC. The mri showed 8 small brain lesions wity only one being active. Vision was back to 20/20 within 2 wks after steroids however there is STILL color deficit everything looks a little faded. Doctors kept saying it will go back to normal within 6 months but my eye has been the same since JanuAry. I have no other symtoms and am currently taking tysabri. I have a great uncle who lived to be 84 with the disease who had it since “diagnose and adios” days and he was completely paralyzed dead weight couldn’t move any part of his body. Only thing he could do was talk and fall asleep on the middle of a concersation. I also have an uncle who was diagnosed mid-late 30s and last time we saw him 10 yrs ago was falling all over the place at. Wedding so I can only imagine how he’s doing today. Both uncles on my fathers side. My father doesn’t talk to his brother but always said he would never want to be him in s million yrs… My grandparents left most of their money to him because he was sick. Now I’m stuck with this shit. Like you say a progressive disease progresses. What do you think about tysabri? Have you tried any infusions? I’m hoping ocrevus will be approved soon. I am such a “together” corporate “bitch” that I can’t picture myself turning into this. I love work I need to go to s job everyday I am on vacation this week and hate it. I have gone to ms society meetings and those honestly scare me more. I do not have symptoms to discuss with others for now but I know what’s to come. I am also in the midst of a crush turning to fruition and dread having to tell this macho body builder type guy who drops his jaw each time. He sees me that I have this disease that could make anything with me a challenge. What would your advice in sharing this with a potential partner be… Disclose right away or build a friendship then disclose?

      Thanks fellow warrior!!!

      • Vikki September 10, 2016 at 4:02 pm #

        Roxanna,
        I know I am not Richard but I felt you needed an answer. I am going on 25 years with MS. Former financial analyst, had a job I loved. MS took it away but also gave me time to enjoy raising a family and find new paths. I was 17 first ms attack, Dx at 23. My biggest advice? Read as much as you can about all of the therapies. You are fortunate to have so many choices now, I had one approved therapy when I was diagnosed. I have been on six, Lemtrada is the only one which has made me feel like I have a chance to actually halt progression. But this is for me, every person has to make their own choice with the help of their ms specialist. You are in NY as am I, there are many great doctors available to you.

        As far as the guy? Any man worth anything will be there for you, MS or not. Tell him. If he loves you,he will be there. If he leaves? Better to know now. Life is full of challenges. You will be fine. There is no other choice. Good luck.

      • r. cohen September 12, 2016 at 3:54 pm #

        Sorry for the delay. I am a believer in full disclosure as soon as you deciode things can get serious and you are interested. Better to get this out and on the table before you overinvest in the relationship. I had women cut and run./ Meredith stuck around. Better to know.

        R.

      • r. cohen September 12, 2016 at 3:56 pm #

        Sorry for the delay. I am a believer in full disclosure as soon as you deciode things can get serious and you are interested. Better to get this out and on the table before you overinvest in the relationship. I had women cut and run./ Meredith stuck around. Better to know.

        Good luck.

        R.

  2. Jan August 31, 2016 at 10:59 pm #

    Ah, time for a couple of anecdotes in noticing your post during my new ritual of resting for 20 min. daily… Richard, your timing also about announces the re-opening of the Nixon Presidential Library in Yorba Linda, CA. My husband and I appreciated visiting a year ago and the insight gleaned from his story. (Many only think of the problems. Crook perhaps, but also insightful non-quitter, to answer you).

    I’ve been to four such libraries, including the Bush in Dallas. (What, no books?) When attending my first, “The Reagan,” I quickly got it figured out that these are museums, not libraries with books. (Am I the only one who didn’t before know that?) And a quick restroom stop at the TAMU location of the Bush Sr. library shouldn’t really count. Okay, so it’s three.

    I met Nixon backstage at the Meadowlands when he took his grandkids to see our show: he was gracious. (Another vivid memory is that of about 17 homeless women sleeping on the bathroom floor at Penn Station – a visual rather ingrained in my then 19-year-old mind, and to this day. Hmm, think about that perspective).

    And the nasty humidity out my way, too, has made life harder. So has stress. Both combine into rather severe pain and walking challenges. Also somewhat poor fine motor writing — but I thankfully can type just fine, thank you very much.

  3. Pat H September 1, 2016 at 9:07 am #

    I am reminded of the ending of the film, “Papillon” in which the protagonist is floating to an uncertain future on a makeshift raft…the small speck on the ocean…the camera moves in to see Steve McQueen strapped on his back to the raft, not sure if he will survive, but defiant in his shout to the fates, “Hey, you bastards! I’m still here!”
    Perhaps this blog and the replies thereto have a similar meaning.
    Wishing you well.
    Pat
    p.s. Here’s the 41 second clip that someone posted to YouTube.
    For the visually-challenged, it’s of value even if only for the audio.
    https://www.youtube.com/watch?v=qWC16myPagY

    • Sue in TX September 4, 2016 at 12:55 pm #

      Pat, loved the clip! Played it a few times. Classic movie, music soundtrack, close in, and despite what looks like a really bad hopeless situation, McQueen is cocky, defiant. Yah, he’s not broken mentally. We’ve all been there in a metaphoric sense. Now we got this great visual to play along in our heads. Thanks!

  4. Jan September 1, 2016 at 2:03 pm #

    Oh wow; that visual has a lot in it (and that I won’t detail). Thanks for sharing.

  5. dale September 3, 2016 at 4:27 am #

    Christopher! i am not the only one who has missed you! i too Richard have been crumpled by the heat and humidity. I have given up to the wheelchair outdoors. but other ailments i should probably see a doctor for i jist want to ignore. No doctor can yet make my worst ailment better so i really don’t want to go at all. I just want to wake up and have this all go away.

    Well, at least Talk like a Pirate Day is around the corner. Something to look forward to.

  6. Jack September 3, 2016 at 5:02 pm #

    Richard, it’s great to see you back, even it’s just for a brief escape from writing. I am also one who finds the summer heat oppressive, so I spend most of the season indoors while almost everyone else is soaking up the sun. This is especially frustrating for someone who used to be an avid surfer and long-distance runner. When I’m out, I usually choose to use my scooter instead of struggling to walk.

    I have great admiration for people who write self-reflective books. I have tried a few times, never able to get out more than a half dozen chapters. It’s not that I run out of things to say; it’s just that I lack the discipline to stay on task. Also, I accept the reality that unlike you, I do not have legions of fans eager to read what I have to say.

  7. Jan September 3, 2016 at 7:52 pm #

    Jack, may I make suggestions?

    If you have not done this, first develop a business plan of sorts… What you want to accomplish overall–to impart. And what value readers will get by investing in their reading time. Then an outline of chapters to get you there. A goal for each chapter. I sense that you may need to develop a direction, and that could give you incentive to stay on task and not wander.

    And yes, while someone with a known name likely has an advantage, just how well known are all of the TED talk speakers? And do they not inspire?

    Just some thoughts.

  8. Lyla September 5, 2016 at 7:55 pm #

    I rarely post but certainly like having this raft to cling to. Often by the time I sit down to read my eyes will not cooperate. Thanks too for the clip.

    • Pat H September 6, 2016 at 8:14 am #

      Lyla-Excellent metaphor. My pleasure.-Pat

  9. Louisa September 6, 2016 at 10:39 pm #

    Saw this quote and thought of you, Richard. “Hope is the feeling we have that the feeling we have is not permanent”

  10. Kat September 7, 2016 at 9:11 am #

    That quote is perfect Louisa! I’m hoping that it comes true.

  11. Jan September 10, 2016 at 5:12 pm #

    Q, folks, re a mobility thing (I chose that last word specifically)…

    As much as I’d rather not, I may likely need to get something for when out on long errands, such as at a museum or mall. Typically, I still think I should be 35 and healthy (neither is the case). I can think, write, and type… just not walk very well. Even managing around the house can be a challenge. My head knows that MS is progressive. My will says otherwise.

    Thoughts:

    Lately, I’ve been stressed and don’t sleep enough. I therefore often take electric scooters at the grocery/Walmart, after struggling to get inside using my cane. The more immediate goal is to get back to hanging onto the grocery cart (ala walker), instead of using the scooter. Right now, too much pain and hard walking challenges. Options:

    1. Wheelchair (have rented them before for vacation and will succumb at the airport, but mostly if around others; not of the mind to do that). Plus, they are heavy and may need a van or car other than what I have. Would rather have a small electric scooter (would appreciate any comments re lightweight ones); but again, the car is an issue. Also, I think that insurance only covers one such thing every five years — big investment, one I am not ready to make for various reasons.

    2. Transport chair: reasonably priced/not flagged on insurance; would emotionally allow it, instead of struggling terribly in pain and weakness when out and, what is worse, in seeing a family member wince when watching me struggle. It’s not just about me anymore.

    3. Rollator: reasonably priced/not flagged on insurance if I can get back to the grocery store regular cart, this would work to lean on.

    4. Walker. Nope. For one, it makes too much noise, “sticks,” and I get around the house better and faster without it. (And I’m kind of still 35, remember?)

    5. Both (2) and (3).

    Any thoughts? And any ammunition for me as to why 2, 3, or 5 would be better than #1?

  12. Jan September 10, 2016 at 5:16 pm #

    Oh, one more thing re #1: I would not use it to go places on my own. While I do work out, I’m not of the mind to use my arms anywhere near that extent to get around.

  13. Jan September 10, 2016 at 6:13 pm #

    I’ve been pretty set on #2 for the reasons mentioned (others could push it; I could use it as a sort of walker if not going far); I pushed my mom in a rollator four years ago–VERY carefully: NOT recommended, esp. by my PT friend who knows of someone terribly injured by doing that.

    So now, do please feel free to comment.

    • CP September 10, 2016 at 9:51 pm #

      Jan, I work in rehab and I think you’re on the right track. If someone else is going to push the chair then the transport chair is sufficient. It’s lighter and easier to fold to put in a car. Rollators can get going fast and can make people lean forward or speed up which pose a fall risk. A walker with swivel wheels and not fixed wheels is better for a more deliberate pace and should be easier to control. Check Craigslist for a used scooter or electric wheelchair and the holders that go on the back of a vehicle.

  14. Jan September 10, 2016 at 11:10 pm #

    CP, many thanks for your input–much appreciated.

  15. Gigi September 11, 2016 at 7:02 pm #

    Jan, I just bought a scooter called ” The Caddy” for my daughter’s college graduation at Cal Poly (expansive, hilly campus). It was $900, comes apart easily in 3 pieces (batteries, steering front handlebars and the main chassi) and can fit in the trunk of the car. It about killed me but given that it gave me the freedom to move about on my own and assemble it myself I actually felt a bit liberated. Liberated that is in a MS kind of way…I hate this vicious diease.

  16. Jan September 11, 2016 at 9:55 pm #

    Gigi, thank you SO, SO much! I will show this to my husband for sure. It’s by Afikim, right? Do you have the three-wheel version? And possibly a link to that site or a co. name for that cost? (The one I pulled up was well more than $1K, though I would hunt around more. Still, the price you mentioned was the best). And since I take no meds or more MRI’s, that I think would help to justify the cost (or so I think, anyway).

    Did insurance cover anything? (I understand that mine may pick up one wheelchair-type of device per every 5 years–now, that could be worth our rather hefty deductible and then a percentage co-insurance charge).

    If you would have asked me five years ago, I would not have been receptive. But now, I am really liking that idea, esp. the way it can store in my regular-sized car, its smaller size, and the idea that I could go on “walks” with my husband (and not have him have to push me). Well, maybe not the price, but I know someone who paid about $2K for a lightweight wheelchair, so overall the whole idea is appealing.

    And yes, importantly, liberating — and reminds me of a really good solution to how very much I really do struggle to get around. Now, if you include a ticket to the Central Coast of CA…

    (Just kidding there — we really like California!)

  17. Christopher September 12, 2016 at 6:11 am #

    Jan,

    The most important things would be to get the stress and lack of sleep under control, and get some physical therapy regularly. Those things will make a big difference with your balance and energy, and also cut down pseudo-exacerbations. Also contact the NMSS, which have chapters nationwide, and ask about their mobility assistance program. Based on your personal financial picture, they may be able to assist with any mobility equipment you need. They could finance the entire thing or contribute a significant portion. It’s worth looking into, and they are incredibly helpful.

    Their number is: 800-344-4867
    The representatives are called MS Navigators, and you just tell them you want to find out about financial assistance for DME.

    I wish you well.

  18. Jan September 12, 2016 at 9:07 am #

    Christoper, thank you, too, for your input. Also appreciated.

    Frankly, and rather sadly, I feel very cautious about flagging any substantial MS expense on insurance — so I will need to investigate. Rather convinced that MS tipped the scales as being a big reason my husband’s job was eliminated years ago in another state and then our subsequently having to move two high schoolers at a horrible time and creating much stress for all. It remains stressful for me. (Illegal, yes; savvy co.–also, yes).

    I agree, as does a PT friend, that stress and sleep are huge (and need to be better managed). Right now, my head feels very “off,” and I assume the reason for my increased walking issues and pain. Also feel that managing those will serve me better than any doctor could.

    I looked into PT at a nearby center, and those costs are also incredibly large, even with insurance. And I’m tired of the entire topic. I am, however, working on a home exercise program designed for people with MS and like and am encourage by it.

    Both you and Gigi have given me very helpful food for thought: thank you.

  19. Ann September 12, 2016 at 10:24 am #

    Jan,
    I have been using a Scootie scooter for about 8 years now and it has adjusted to my changing mobility over the years. I call it my best friend and my worst enemy:)
    I paid 500.00 for it then. The heaviest piece is about 40 lbs and it too fits in the trunk of a car.
    When I purchased it, I was annually attending conferences across the country and across states. It flew well and was easy to load into luggage and they would always have it available when we landed. I would have missed my son’s graduation from boot camp without it.
    When I first used it, I could load it into my trunk and unload it when I arrived, using it for the days conference. Without it I would have left my industry years sooner.
    Now my husband can still easily load it to go visit somewhere or run errands with me. It takes a little more planning for time purposes but you should already be used to that dealing with MS.
    One note: When I started looking at them, my husband insisted I only look at 4 wheel scooters. It was a good thought as it will keep it functional for you longer. If your balance gets worse it will remain more stabling.
    This scooter also has removable arms which is how I use it. It makes it great for getting into small spaces and doctor offices.
    Good luck in your decision and keep us posted why and what you do. The rest of us can learn from your thoughts

  20. Jan September 12, 2016 at 8:27 pm #

    Ann, thank you as well. Seems that I am right now in a holding pattern, as I would be okay with a transport chair or scooter but am not the only one involved with this decision. I hope to move on this sooner rather than later.

    Well, at least a decision can move, if I don’t so very well 🙂

  21. Christopher September 14, 2016 at 4:43 pm #

    This is interesting…

    http://www.foxnews.com/health/2016/09/14/roche-says-new-ms-drug-works-better-than-mercks-rebif.html

    It’s another monoclonal antibody (like Tysabri), so it will probably come with some PML warnings when it rolls out in a few months. But the part that is remarkable is that it seems to be an effective therapy for progressive MS. Albeit Primary Progressive MS, but there is probably a very good chance it will work with Secondary Progressive MS as well. Also notable is that its efficacy is on par with, and in some cases better than, Tysabri.

  22. Anne September 15, 2016 at 11:30 am #

    Thanks for posting that Christopher. I met with my neurologist this week and he brought up this upcoming treatment to me. He was very hopeful about the drug but did discuss potential risks with this treatment.

    You can check out wheelchair kamikaze website for a great article on ocrelizumab.

    Here

    http://www.wheelchairkamikaze.com/2016/03/ocrelizumab-ppms-trial-data-released.html

  23. Jan September 15, 2016 at 11:13 pm #

    Thank you both for the info, as it was new news to me.

    Will say that I, at year 11.5 and with SPMS, am personally skeptical in that I had a high JCV test, am therefore not a candidate for Tysabri, am very — as in extremely — meds-sensitive, not fond of big pharma profits, and prefer the idea of a scooter over the possibility of becoming a statistic. I see more risk than help.

    Will, however, aim to keep an open mind.

  24. Christopher September 16, 2016 at 7:53 pm #

    Please do, Jan.

    I completely understand your reticence, and companies like Valeant and Mylan don’t make things any easier. But getting on, and staying on, a DMD (disease modifying drug) is incredibly important. MS continually attacks 24/7, and it never rests. So staying away from medications because things aren’t really moving or bad side effects that are intolerable is a mistake–sorry to be blunt. The damage to our nervous systems never stops, period. Also there is really no “natural” way to stop, slow down or cure MS unfortunately. Our immune systems are unbelievably strong, and they have turned against us. So the medications need to be inordinately strong too… at least for now. It’s just really difficult reality to have to deal with. Between 70% to 90% of all humans carry JCV antibodies. People with MS are at a higher risk of developing PML because most are already immunocompromised, and to be honest any amount of JC virus is risky when taking any drug that lowers immunity any further. Researchers are pretty much required to study the ‘numbers game’ in regard to the size of antibody titer of JCVab in each individual. I don’t like it because it causes too much confusion between the scientific and the lay communities. Your doctor most likely thought it was too big a risk for you. And the truth is that if you develop PML you have no chance. There’s no cure and no way to stop it from killing. Doctors just throw whatever they have at it and pray. I don’t see anyone as a statistic, and no ethical researchers do either. There’s a dozen different drugs for MS now, and 4 or 5 for SPMS right around the corner (within the next 2-3 years). So keep your hope up, and keep trying… something will eventually work for you.

  25. Jan September 17, 2016 at 1:27 pm #

    Thanks, Christopher, and I do hear you.

    I only did the JCV test to be nice to my local neurologist, who asked after getting me into a same-day appt. and 3-day Solu-Medrol string, the steroids at my request, 1 1/2 years ago after my worst flare. The steroids did nothing (third total, likely last try): only time helped. I think it was all brought on by a nasty new, non-paying client. (But I did learn a lot from it all in terms of being more savvy).

    I personally think that my Mayo “wait-and-see” approach did have merit, as when I first presented into their office everything was “grossly intact.” Now, it’s just gross, to use my own more familiar wording, after years of high stress that I myself think contributed greatly.

    And now, a 180 on the wheelchair.

    This morning, my husband and I tried out a transport chair and also a wheelchair at Wags–and I do see the merit of a real wheelchair in that it actually can bring me more freedom. (My idea of also using a transport chair as a walker is not now so grand in that I have more head, ankle, and walking issues). Although I came home and cried, I at least am not struggling anymore with self-identity in having MS. And my husband has accepted it far better than I. What I may always struggle with is the inability to act in normal-type ways; to DO what I otherwise could have done.

    Maybe it’s time to “get real,” accept better, and stop with unnecessary struggling. Looks as if my options now are a lightweight wheelchair, light scooter, or possibly both.

  26. Jan September 17, 2016 at 1:40 pm #

    …And I should mention that I’m not throwing in the towel. I still walk when I can, even with a cane, recently settled into new freelance work, am still doing some specific MS strengthening exercises, swimming, and aim to rest better (we’ll see if I do the latter; I’m a rather horrible napper).

    Folks, life for everything is relatively short I aim to make the most of what I do have.

  27. Jan September 17, 2016 at 1:45 pm #

    And it is advisable with my work to proofread everything, and well:

    Folks, life for everyone is relatively short; I aim to make the most of what I do have.

  28. Dale September 18, 2016 at 12:40 am #

    Christopher I am so glad to see you back. I might even go find a new neurologist now, I’d frankly given up on all the meds and MRI scans. We all really appreciate your insight.

  29. Dale September 18, 2016 at 12:43 am #

    Oh and I saw a man using a Quickie wheelchair in Switzerland. I really liked it, might look into it. I used the transport chair once after getting it, not worth it.

  30. Jan September 18, 2016 at 12:15 pm #

    Yes, and after an in-person try at Wags, I now feel similarly about the transport chair.

    The Quickie also looks interesting (except for the cost!) For a soon-upcoming event, I think I will go with Medline for a reasonable cost for this venture. ,

    And I must admit, some relief in the idea of far, far less struggling and pain. Will still work on strengthening and walking for shorter distances.

  31. Gigi September 18, 2016 at 6:03 pm #

    Jan, Sorry it took me a bit of time to get back to you, the heat is killing me, almost literally. The company I bought the caddy from (and yes Afikim is the manufacturer) was “Discover My Mobility”. The total cost was $995, free shipping (the Afikim warehouse is apparently in California). If you go to the website don’t be scared. I was as their website looks horrible. very difficult to navigate. I finally just called them and all went well, super nice folks.

    On the meds comment, I agree – hate those drug companies. But as Christopher notes we gotta do something to slow this purge down. I was/am JCV positive, on Tysabri for 2 years (DX 9/2012 after 9 months of horror), it was a miracle for me. My MS specialist took me off Ty (said I could go back in 2 years) and put me on Rituxin. (Off label for MS) I had my 5th, 6 hour (yes 6 hours) infusion 2 weeks ago. First time ever for any med,had a reaction. We will see what the future brings for me, but for now, I am sticking with Rituxin, no new lesions on my brain or spine and I don’t seem to be getting worse, yet. Be well!

  32. Jan September 20, 2016 at 4:29 pm #

    Thanks so much for all of your info, and I hope you will do well on that.

    And yes, all the humid heat has been nasty!

  33. dale September 20, 2016 at 10:41 pm #

    Can i blame that for being kinda bitchy lately? 🙂

  34. dale September 20, 2016 at 10:48 pm #

    Oh and I bought an $800 wheelchair that insurance covered some of from a local medical supply. The arms raised which was helpful going out to dinner. One of the arm rests came off so I bought about $250 emergency replacement on Amazon. Works great, wouldn’t want to live in it though without a cushion. But Medical supply places are are nuts with costs.

  35. Jan September 21, 2016 at 9:59 pm #

    Yes–humid heat should shoulder something!

    Still like the idea of a very lightweight wheelchair or a scooter and will, if need be, think more about them in time. Not now ready for the high cost. Not now willing to flag it on insurance (still skittish from a past experience, though I likely should not be).

    Tonight, just purchased a Medline “lightweight” K4 wheelchair at a local drug store at about the same cost as your replacement (store display, so it brought the cost down some). Earlier visited a med supply place with decent enough costs, but preferred the Medline to Nova. Agree–other med supply places charged really high prices. The Medline customer support phone rep was also helpful. It will work for what I currently need it for.

    Am truly hoping that I am dealing with a combination of a flare of some sort and humid heat. Time will tell!

  36. Jan September 21, 2016 at 10:44 pm #

    Yes–humid heat should shoulder something!

    Still like the idea of a very lightweight wheelchair or a scooter and will, if need be, think more about them in time. Not now ready for the high cost. Also not now willing to flag it on insurance (still skittish from a past experience, though I likely should not be). And I’d need more research time (I think that insurance covers one such device every five years).

    Tonight, just purchased a Medline “lightweight” K4 18″ wheelchair at a local drug store at about the same cost as your replacement (store display, so it brought the cost down some). Earlier visited a med supply place with decent enough costs, but preferred the Medline to Nova. Agree–other med supply places charged really high prices. The Medline customer support phone rep was also helpful. It will work for what I currently need it for.

    Am truly hoping that I am dealing with a combination of a flare of some sort and humid heat. Time will tell!

  37. Dale September 22, 2016 at 1:02 am #

    Don’t forget tax deductions for medical supplies, I’m looking into training our new dog as a service dog and apparently some of those costs can be tax deductible as well. We just got a stair lift which I kind of hate but my husband got tired of having to lift my foot up to get upstairs, think that’s deductible. I honestly can’t believe I’ve gotten to this point so quickly. But it’s probably been coming longer than I care to admit, was just better able to fake it before.

  38. Jan September 22, 2016 at 8:26 pm #

    Sorry to read that, but understandable.

    I may always be incredulous about the whole thing!

  39. Jan September 22, 2016 at 9:59 pm #

    Oh, and a good reminder about taxes; thx.

  40. Dale September 23, 2016 at 12:01 am #

    Jan I know you too are surprised when you get up out of a chair and can’t automatically go bounding across the room. It’s a cruel trick, like every time. I always slalom ski in my mind during MRI’s. So we all pray for some miracle, meanwhile all those expertise bands etc add up. Throw in dental and vision costs and it’s easier to hit that minimum before the deduction kicks in. Think it’s something like above 7.5 percent of income.

  41. Jan September 23, 2016 at 3:27 pm #

    Thanks, Dale.

    RICHARD, today’s WSJ, during a quick and rather late lunchtime read, on p. 15A mentions “Right-to-Try” and ends with, …deserve hope. They deserve the right to try.”

    Thought of you and your book.