From Swimming To Running; Adjusting to the Pandemic

Type 1 & LADA
621

AWEFUL EXPERIENCE IN THE EMERGENCY ROOM:

On this past Saturday, I began experiencing unrelenting and unbearable pain. I tried staying calm, distractingly ting myself with Netflix and games of cards with my husband. I was taking my pain meds as well as relying on Ice Belts wrapped around my lower and upper back without relief. Somehow I got through the day but had a miserable nights sleep and finally woke up at 3am. and took another muscle relaxer (the latest one they put me on just 3 days ago is called SOMA; has anyone else taken this?) It helped me to fall back asleep until around 6-7am. And I told my husband that we needed to get to the ER ASAP.

In the hospital they gave me an injection of Morphine almost immediately (fortunately all my NYU hospitals are connected so they had ALL of my records available to them and did not have to drag me through the arduous mire of explaining everything Iā€™ve been through.)

After about an hour and a half, I was still in substantial pain and they offered me two options: one was to admit me to the main hospital, which I really wanted to avoid, or two, to give me an injection of an NSAI called Toridol. (there was the 3rd option of giving me Prednisone, but there was no way in hell I was about to deal with that nightmare.) I chose the Toradol, and it did make me quite relaxed, and I felt like I would be able to get home and self-treat. So we left. We were there about 6 hours. They were extraordinarily compassionate, and for that I am grateful.

Today I saw my psychopharmacologist (who treats my schizophrenia with a type of shock treatment), and he targeted the parts of my brain that cause stress and pain centers. This helped immensely. But within 1/2 an hour, my BGs began dropping quite quickly; I believe this could be due to the removal of my stress (Stress usually raises my BGs and causes insulin resistance.) I lowered my pump basal rate to 90% and drank some apple juice. We drove home from there.

Tomorrow I see my second spinal surgeon for a consult. I have gotten stellar reviews for him and referrals. (unfortunately, he does NOT accept insurance, but Iā€™ll cross that bridge when/if I come to it.) We will see what he has to say.

My BGs are spiking now, but in all fairness at this point, I dont give a sh*t.

Off to the pharmacy to pick up my Percocet, then back home to watch some more Netflix and try and chill out and distract myself.

As always, I will keep you posted. Thank all of you for the wonderful outreaches and support. Your unconditional caring and kindnesses have carried me through so much of this I cannot even put it into words.

signing out,
DM

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622

Praying you will find some relief.

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You know what you have something in common with the NFL players! They use these injections pretty aggressively so you and your favorite running back are probably using at least some of the same medicine. Pretty cool. But damn, you are one tough woman! Glad you are getting the second consult.

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Ditto what Chris said, you are one tough woman and you will persevere. Thanks for keeping us posted and know that you are in my prayers. :pray:t3: :heart:

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Oh man, @daisymae ! lots of tight, but ever-so-gentle, hugs, are being sent your way. Hang in there!

p.s. It sure sounds like you have a gem of a husband!

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I must admit that you are 100% right about him. He is the greatest man on the planetā€¦at least in my opinion! Kisses an hugs throughout every day, a shoulder to cry on, encouragement and support. A dream of a man :heart: :+1: And I dont take a moment of that for granted. How many people can say that they are married 28 years and are still in love with one another and are still best friends? I know I am very very fortunate!!!

When I wake up every morning, before getting out of bed, I make a ā€œGratitude Listā€ which puts me in the best possible state of mind to face the day ahead (without self-pity). I have so much to be grateful for, it amazes me. Despite everything I am going through, I am a very satisfied customer of life.

Today is the day I see the surgeon. I dont want to get my hopes up too high, but I think he may be able to help me. :pray: Iā€™ll keep you posted. Tank k you all for your continued support. It is literally carrying me through this experience on the wings of angels.

singing out,

DM

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This is great news. Maybe I can try out for next years draft. I am a huge football fan. :rofl:

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The Jets can definitely use you. You will bring some much needed toughness to their organization.

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No Sh*t. They need all the help they can get. (ever since Joe Namath retired :rofl: .)

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It shows!

What a great idea! Iā€™m going to begin to do the same :slight_smile: Thank you so much for sharing!

I hope your appointment went well today!

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GREAT NEWS; ITS ABOUT TIME:

yesterday I saw a top notch surgeon, a doctor Sean McCance (look him up on the internet). I left there feeling the first sense of hope in over a year. First time I felt validated for the severity of my pain. It was the most thorough exam I have had yet, and he instilled in me a confidence I had yet to experience. He firmly (and I emphasize FIRMLY) that the course of my pain is coming from my scoliosis and putting the pressure on my lumbar spine as well as the stenosis on my upper back. He highly recommended spinal fusion surgery with a 95% success rate. a 4 hour surgery, a 4 day recoup in the hospital, and about a 2.5 ,month at home recovery with a health aid for fist week. He has preformed thousands of this surgery with great success, and promised that I would b able to get off all my pain meds permanently.

First I have to get a CT scan and a bone density test on FILM, as opposed to merely a computer image (much much more accurate.) He would be putting rods and screws in my spine to straighten out the scoliosis and separate and cushion the stenosis.

I left there with such a sense of hope I cant begin to express myself. He was mildly friendly, but much more technical in his explanations of everything. very surgery oriented. Today I am in soooo much pain from all of the tests he ran, the pressure he put on my spine while evaluating the source of my pain, as well as performing strength tests and neurological tests. As I said: THOROUGH. and in comparison to the other surgeons I have seen, extraordinarily validating ( I did not feel like this was all do to stress or narcotic seeking.)

So thats the latest. I hope that I provided some gratitude and hopefulness to all who have been on this journey with me, as well as helping anyone who may be facing the same or similar experiences with pain remedies.

signing out,

DM

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Hey that is awesome news!

When is it going to happen?

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Ditto to what Eric says/asks!

This doctor seems like a real confidence booster! Iā€™m so glad to read how well it all went, even though later youā€™re having to struggle through the effects of the thorough exam. But, in the end, the docs thoroughness will surely pay off.

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Dont have a surgery date yet; first must have a CT scan and a bone density test, but I think that this will happen sometime in July :crossed_fingers: :pray:

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Great news, @daisymae ! So glad you finally found a great surgeon!! July is nearly here!! Praying for you :pray: :hugs:

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Sounds Great! Hope it pans out and you get some relief!

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@daisymae. Hoping this is the solution youā€™ve been searching for!!

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@daisymae this is great news! And July is here! Hoping that you can get the CT scan and bone density tests completed soon and surgery scheduled. I am so so sorry that you have been in such pain and am hoping hoping hoping that you are at the beginning of the end of the road for all of it. I have an awesome pair of running shorts that I want to send to you once youā€™re back on the road! xoxo - Jessica

PS - I receive IV toradol when I have to go to the ER for really bad migraines and the rush of clarity that I feel from the elimination of pain is miraculous. So glad that it worked for you, too.

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Jessica, so glad to hear that the Toradol works so well for you. I used to suffer from chronic migraines myself, and I was given Fiorocet, which didnt ever help that much. it just made me stoned, but the pain and nausea never would go away.

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FINALLY DECIDED UPON A SURGEON:

Itā€™s me again, with the latest updates on my upcoming surgery. After vetting out 3 surgeons, I have finally decided upon the one I feel most confident in. The first one was a real negative Nelly and didnt think the surgery was worth the risk. He preferred I stay on pain management medication (basically for the rest of my lifeā€¦what a moron.) He was cold and callous and dismissive. Crossed him right off my list.

The second surgeon I saw, who was revered both from endless reviews and a dear friend who he had very successfully operated upon 13 years ago (without a single glitch) He was personable, validated my symptoms and the pain that I was suffering, took into account all of the alternative treatments I have tried, genial, easy to communicate with, and EXTREMELY thorough. Not only did he have me get 2 more MRIs and X-rays (this time Thorasic as well as Lumbar) but he had me get a CT scan and a Bone Density test. All of my testing proved my need for surgery and that I was an excellent candidate. My strength is still very good (despite not having swam all year, and I owe this to my walking), my bones are also very strong and without signs of deterioration (despite being post menapausal for over 12 years), and my D is under supreme control. Wow, what a ringing endorsement for my overall health (cant begin to tell you how this put me at ease!!!)

What I am having is his specific specialty. He is a spinal neurosurgeon and has 0ver 30 years of experience. As well, he is connected to Mt Sinai Hospital, which is where my endocrinologist is (and they have a stellar endo department), so I feel safe and confident that my D will be managed appropriately during my stay inpatient. I will be in the hospital post-op for one week. They will get me up and walking on my second day, and the first 3 weeks I will not be able to bend, reach, or take a bath (showers permitted, for which both I and my husband are very grateful!!! :rofl: :wink: Within 3 months I should be up and have significantly reduced pain. Walking EVERY day (no PT necessary), and observed by my surgeon through regular visits.
Sitting in a chair must be restricted, as this puts terrible strain on my spine and is excruciating. (no biggy there, except I wonā€™t be at my desk and computer :frowning_face: Massages are encouraged.

He believes that a considerable amount of my pain is a result of my back muscles having taken on the work of doing what my spine has been unable to do, and thus they are extremely tight and painful. That should be relieved once my spine is repaired.

He will be reconstructing my entire spine removing what is there and replacing it with rods and screws, as well as removing 2 herniated lumber discs, using a bone graft (taken from my hip, which I understand to be just shy of unbearable) and creating ā€œcagesā€ to separate my vertebrae. Its a 6 hour surgery (eegaaads!).

He is trying to schedule the surgery within 1-2 weeks from now ( today is July 18th,2021), but first I must have an EKG and full bloodwork for clearance.

I am very excited to have hope that I have not yet had, I am excited that there is a solution. however, I am scared to death. I am frightened about the recovery pain , I am frightened that the surgery will go awry, I am frightened that he is totally reconstructing my spine. I know fears are normal, but for me they are real and feel overwhelming.

The pool has completely reopened, and my hope is that I will be able to get back into my groove in about 6 months. Obviously slowly at first, but I gotta start somewhere!

So thats the scoop. And, as always, I will keep you posted.

signing out,

DM

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