From Swimming To Running; Adjusting to the Pandemic

[daisymae]

A GOOD NIGHTS REST AND PERFECT BGS:

oh thank goodness. I slept like a baby last night. I woke myself up three times during the night to test my BGs, and they were perfect. I had put myself on an 80% TB earlier that day, and it kept me from bottoming me out and needing a gallon of apple juice. TG

The health aid helped me to wash my hair right after she walked in the door, so I felt pretty and less depressed. Also, a HUGE thing was that I was able to finally go to the bathroom, and I was no longer distended in my tummy and I was able to have an appetite and enjoyed a delicious hot bowl of 8 grain “oatmeal.” oh how yummy that was. I made 2 servings!!! ( With butter, cream and some salt.) ( right after breakfast I lowered my basal to 80% )

By mistake, I took 2 doses of my Oxycodone around lunchtime. I got totally stoned. And, I got heart palpitations, which I had to counteract with an anti-anxiety med cause it was hard to breath. But it did relieve ALL MY PAIN!!!

I walked a lot yesterday, but I went at a much more moderate pace. I walked for 2 1/2 hours. But I stopped when my legs started to burn (and I had to b careful bc I was still experiencing the lack of pain from all of those pain meds )

Anyway, Today I took it a little lighter. I walked for 1 and a 1/2 hours (and ate a little too much food on the way…egaads what a number I did on my BGs) but it was a really nice comfortable walk. I got to vote for the NYC politicians , then stopped to buy some groceries, then walked home. But right before I walked into my building, I took the time to take some photos which expressed how to make living in sweatpants funky and cool here’s a sample:

So here’s a small taste of Brooklyn, NYC in the midst of a windy Fall afternoon. You can have full spinal reconstruction, feel totally miserable, in excruciating pain, constipated, having terrible blood sugars, frustrated, but still find the time for a joke and a giggle.

signing out,

DM

[Chris]

Glad you are taking it easy. The first pic is absolutely perfect! Love it.

[JessicaD]

So, so happy to read these updates, DM. Despite/with all ups and downs, you are ROCKING IT. xoxo - Jessica

[Millz]

@CatLady This would be my Australian Shepherd, Bolt. He loves plain, organic pumpkin from Trader Joe’s (100% pumpkin, nothing else). When he had a bad stomach bug, we fed him that until he felt better. Now he expects it with every meal (but we don’t give in).

[Trying]

@daisymae

So here’s a small taste of Brooklyn, NYC in the midst of a windy Fall afternoon.

Love these photos of you, DM!!! Thank you for sharing and keeping us posted, and entertained with your witty way of expressing everything, despite some it of I know is tough to go through! You have a way with words and love reading your posts!!! I’m so glad you are recovering and feeling better!!!

[daisymae]

A LITTLE BIT OF GOOD NEWS:

so its almost 3 months since my surgery. I have my walker which I no longer have to use when I am indoors at home. Now I got even better news: I no longer have to wear that god awful back brace either in doors in my home or outdoors when I am walking!!!

My PT is thrilled with the fast pace of my recovery (despite the fact that I am not diligent about doing the at-home PT exercises ) He believes that this has much to do with all of the consistent walking I have been doing. He says I walk more than he does…and then we both giggle .

Unfortunately bc none of the medications are working (and only causing way too many uncomfortable consequences) for my neuropathic pain, I am titrating off of the last version of it (Gabapentin). There are no more medications I can try that are specific for that, and, it can take up to 18 months (or never) for the nerves to heal before I can experience relief. (OMG, I really hope I one of the ones who find relief!!! .)

But, I want to keep my mind and my spirit on the prize: NO MORE BACK BRACE. that is this weeks prize. And, other than my thighs and backside, with the exception of my lower back (which I attribute to my mindless over-bending downwards and forwards), I have experienced NONE of that pre-surgical pain. Its gone. And I believe I made the best decision I could choosing to have the spinal surgery. Everyone I spoke with (family and some friends) was utterly against it with the exception of my husband and one girlfriend (the girlfriend who had recommended my surgeon to begin with, bc she had used him for neck surgery 13 years earlier and swore by him). Some people are whole-heartedly against surgery as options. Some people are more open-minded. My husband had lived with me for the 2 years of my excruciating pain and multitude of doctors, specialists, and holistic healers (masseurs, acupuncturists…etc). He knew how hard I had tried to get well, he knew how open-minded I had been through it all. He saw the pain I went through with all of the non-surgical procedures. When I told him I wanted the surgery, and when he came with me to “interview” specialists and surgeons, he stood beside me and rooted for me. And I have surgeons (and other doctors) in my family. Even they were against the surgery. But were they living in my skin? Were they living my life? Could they even empathize with my pain? Absolutely not.

But I was tired of it all. My God it was exhausting. And it kept me from living my life the way I wanted to live it. It robbed me of so many things.

But enough of that. Let me celebrate today with you. All of you. You stood beside me, you held me up when I was down. You kept a smile on my face. You reminded me what FUD stood for, and that I could carry that message into all areas of my life. And thats exactly what I did, and it is exactly what I am continuing to do. I am on a path of strength and dreams and freedom. And, as Eric explained to me, the multitude of scars on my body are not ugly, they are battle wounds of my strength, my courage, and my fearlessness. And I thank him for that, bc I DID feel ugly. I no longer felt like Daisy Mae. I didnt feel beautiful or sexy to my husband. I felt like Frankenstein. But FUD cheered me on and kept me going. And I decided to stick around. And I was able to see that I could stick around for others. I was no longer alone. I was a MEMBER. A select member of an elite club. And I wouldn’t trade any of my experiences for the world. And I wouldn’t trade any of YOUR experiences for the world. It was through so many of your experiences that I learned a better way of life.

SO, if you are new, stick around. Read our stories. Welcome yourself into our lives. Welcome us into yours. bc I promise you, it will b worth every moment that you read our stories and decide to change the way you live your lives.

signing out,

DM

[Trying]

Congratulations, DM, for being back brace free!! Yes, I agree, all of your daily walking is really speeding up your recovery!! Thank goodness for the natural athlete in you!! You will soon be back in the pool!!

[elver]

@daisymae

NO MORE BACK BRACE

WOOHOO! CONGRATULATIONS!!! WAY TO GO!!!

@daisymae

the multitude of scars on my body are not ugly, they are battle wounds of my strength, my courage, and my fearlessness.

@daisymae Those scars, whether physical or mental are as @Eric explained our battle wounds. No one should ever be ashamed of them, wear them with pride, and as a memory of the fomidable experiences you have endured.

@daisymae

it can take up to 18 months (or never) for the nerves to heal before I can experience relief.

@daisymae Before I had medical insurance, I used ice to calm my neuropathy pain because I could not afford the Dr’s visit or the meds. It works. It’s a pain in the butt, because it’s fleeting (as in you’re reapplying every hour to hour and a half). Maybe it might help on those days when nothing else will. Nerves take a looong looong time to heal. Be patient. Time heals all things and as you so rightly stated:

@daisymae

I want to keep my mind and my spirit on the prize:

I personally can’t wait to hear/read about your first swimming stories in 2022! (BTW, I feel so very lucky to have been able to be part of the @daisymae SuperHero Adventure Series, even if it has been vicariously!)

[daisymae]

Elver, I wish I could bang down on the little red heart for “likes” at the bottom of your share a hundred times!! Thank you so much.

[Chris]

@daisymae

Some people are whole-heartedly against surgery as options.

To be fair to your friends and family, most back surgeries have an unacceptably high failure rate compared to other surgical interventions. What I found most refreshing about your approach is that you tried literally everything non-surgical that could be done before considering surgery, then you approached finding the right surgeon like a boss (+live in an area with a good number of choices), then you considered the major complications and decided that surgery was right for you. If every patient approached their problems like this, we would have a lot less med mal lawyers and a lot more satisfied patients. So glad you are starting to reach awesome recovery milestones! I am rooting for you.

[Eric]

@daisymae, do you have a target date for getting back in the pool?

[daisymae]

@Eric

@daisymae,

I am hoping to get bk into the pool in apprx 4-6 months from now. But wouldn’t it be great if it were sooner. Most of this is bc I cannot feel my left leg at all, and I dont want to sink

PS: As its entirely possible that my neuropathy in my legs does not heal, I am going to have to learn how to swim without the full use of my legs anyhow. though.

[daisymae]

SOME GOOD THINGS AND SOME NOT SO GOOD THINGS:

Good stuff: went off the Gabapentin. Almost immediate reversal of nasty side-effects. first off, I want to thank the supportive and generous members of FUD who have shared their own experiences with this drug. You helped me to make my decision to discontinue taking it.

Within the first week, I started having regular bowel movements again. Within just a few days following that, my bloated belly returned to its usual flat tummy. Within the second week, I lost almost 5 pounds.

Some of the bad stuff:
Now, I won’t lie to you, but there have been consequences. I did begin getting terrible headaches. Its about 3 weeks now and the headaches havent dissipated. I can barely let the light into my room, and even working at this computer now is painful. Also, and perhaps more importantly, the nerve pain has returned double what it was while I was on ALL of the neuroleptic medications. I didnt realize that it would hurt so much. Silly me. That’s kind of like stopping taking Tylenol and wondering why your fever has returned

BUT, and this is HUGE, I would rather live with this pain than the side effects of that wretched medication. I won’t recommend this choice to others. It is simply mine and mine alone. I am responsible for the decisions I am making over my own body here. And no matter the intelligence, the integrity, the knowledge of the finest doctors in the world can make those decisions for me. They can certainly educate me, but the bottom line is that the decision and my actions are my responsibility.

I am still going to PT. I am still walking every day. (despite the pain in my leg and my mobility limitations). In fact, I walked for 4 hours the other day. It was wonderful out, and I was getting my Covid shot, so I was kinda planning on getting a little laid up on the sofa for a couple of days and thought it best to take advantage of the weather.

I know I have a long way to go. but its going. Just thought I would fill you in and share my Gabapentin experience with you.

signing out,

DM

[daisymae]

ITS MY LATEST BALANCING ACT (having a bit of fun on Thanksgiving):

Just thought I would post my latest tricks (dont let your children get any crazy ideas!) I practiced this for almost an hour to get it just right. Off the Gabapentin now, and in excruciating pain, I still LOVE to smile and be the silly kid on the block. (couldn’t indulge in a traditional Thanksgiving dinner due to nausea, but very determined to keep a smile on my goofy looking mug, dance a bit of a jig, and hopefully make you smile too.)

(100% off of the Gabapentin, still sick as a dog living with all of the withdrawal symptoms of a rushed detox)

Happy Thanksgiving to All and Your Families!!!

signing off,

DM

[daisymae]

JUST AN ADENDUM:

I wanted to add that hard work prevails: just 2 weeks ago, I could NOT lift my leg 3 inches off of the ground!!! And now I’m practically dancing (However, I am still working on being able to put my own socks on!)

(No shame in asking for a little help from my friends)

[Trying]

@daisymae

hopefully make you smile too.

Thank you, yes, indded, I’m smiling to see that you are out and about on a beautiful Thanksgiving day and without your walker, doing a little jig, no less!! Keep at it DM!!!

[Eric]

Awesome to see you building your strength! That looks like one of the core strengthening things they show you, where you have to balance on one leg for a few minutes.

Hang tough on the gabby withdrawal.

[daisymae]

@Eric

Hang tough on the gabby withdrawal.

couldn’t resist responding:

I spoke to a good friend who although is not one of us, she went through even more intense reconstructive spinal surgery years ago. Although our stories are similar, she was unfortunately not able to get off of her opiode pain meds at all due to a surgical complication, and she remains on the Gabapentin (which works for her without a problem).

Well, when I told her what I was going through she felt certain that I was indeed going through withdrawal and suggested I just take a tiny dose of the Gabapentin to ease my way off the tail end of its finale. I could only think, “Well, I’ve survived it thus far, there’s no way in hell I am gong to dance with that Devil even the slightest again! I’m riding this out till the end!”

And just wanted to add: Last night while sleeping, I was sweating heavily throughout the night; I went through 3 T-shirts. One after the other, pealing each one off, sopping wet. I cannot confirm this yet, cause its still early in the morning, but I am (praying) that this was an indication of a final step in my body’s cleansing itself of whatever is toxic (the Gabapentin) to it.

[Trying]

@daisymae

sweating heavily throughout the night;

Wow, actually sounds like a severe, too!! So glad you woke up. Yes, keep up the gabby withdrawal. Those side effects are terrible!!

[daisymae]

2022 UPDATE, MY 6TH MONTH SURGICAL CHECK-UP:

I saw the surgeon last week. My rods and cages and screws are all holding perfectly in place. He asked me to do certain “exercises” to c how my mobility was coming along. I was able to do most of them half decently. I think he expected more from me. But I am still in a lot of pain and still not very flexible (well you put a bunch of titanium in your spine and see how flexible you become )

After almost 2 months of searching, I finally found a doctor in NY State who would treat me for pain management and was able to prescribe opioids. (I did not know that you have to be licensed specifically to do this, and that not all doctors are able to write out any old script they want).

I found a fab team that is loosely connected with NYU Langone, and I was assigned an entire pain management team. I was given an appointment right away ( I think they took pity on me for the fact that I was almost out of my pain meds and could essentially end up in the ER without them). Either way, they saw me, and the doctor I dealt with was everything a doctor should be: a good listener, respectful, understanding, communicative and clear, did not rush me, open to suggestions and able to offer them as well…you get the point. This guy was great.

We made a plan to ween me off of the oxycodone by May (hoping that will work!!!) its a rather simple plan that my former PMspecialist as well as my psychopharmacologist came up with: every 3 weeks, I reduce my meds by 1 pill. I start at 4 every 6 hours, then down to 3 every 8 hours, and so on and so on till I am drug free. And, while I am weening off, to help me to avoid feeling the withdrawal , my doctor prescribed 2mg of Klonopin 3 times a day keeping me from getting the gitters. (ive been on Klonopin for over 30 years, but I ve only been taking 1mg two times a day and only extra if truly needed)

Not ready for swimming quite yet, but hopefully, by May, I will b back in that pool doing my thing.

For anyone who is interested, I am posting the Medical Facility info below:

Hudson Medical
Tribeca Location:

281 Broadway (between Chambers and Read)
Ph # 646-596-7386
FAX# 844-408-7661

I am dealing with Dr. Stephanie Shen, MD, and have been treated by Dr Jonathan Phillips, MD.

They also deal with anesthesia, acupuncture, deep tissue massage, epidurals, branch blocks, and other steroidal procedures, PT…and obviously pain medication management (about which they are very well versed and knowledgable.)

all to say, I did not get any feeling whatsoever that they thought I was a drug-seeking junky trying desperately to find a prescriber for my dope

From previous experiences with broken bones, pneumonia, influenza, etc, despite the fact that my D and my A1c are under incredible control, that I am thin and strong and am the perfect candidate for a surgery, I am a very slow healer…always have been. So it doesn’t surprise me that this recovery process is taking as long as it is ( despite the fact that it is surprising the surgeon). I am being as patient as possible. The pain is still horrible, but I push through it a day at a time. It is still very difficult to get in and out of bed, and this makes me feel like a very fragile 85 year old woman, but once I get up and moving, I begin to feel a bit better. It is hard to get comfortable though.

Since I have already detoxed from the Gabapentin, however, that neuropathic pain returned. It is mind-blowing how painful it is. I dont know why the drug seems to help so many other people and not me, but I would rather live with the pain than the side effects of it. My choice, crazy as I am.

Hope someone finds this helpful. Hope that if you need a referral to the Hudson Medical center, that info posted will be a good guide for you.

signing out,

DM