Where i've been this year

DaisyMae Here. Its been a long while since I’ve been in the pool and I havent logged into FUD to do more than read about your experiences, strengths and hopes (which is, actually, A LOT!!! )

two main reasons Ive gone incognito: Terribly painful procedures done on my spine, my back, the steroidal medications Ive trudged through, as well as one of the major changes taking place in my life lately: My Fathers Infirmities which have consumed me and taken hours of time. Everything Ive been going through would easily (but with GREAT challenge) b remedied with a brief 1/2 hour swim, but its simply been too painful to even walk to the pool, and I am using all my energy to care for my father, despite having two sisters who are not cooperative in his health care :grimacing: .

So distant have the A1c counts been in the low 5%. Last one was 6.7% . Ive stumbled through steroid treatments along with other minor surgeries and medication changes. My BGs have not been too friendly, but a source of frustrations and disappointments. I started out last year with a new endo who I absolutely fell head over heals for. He helped me find relief from my D pitfalls (He is a T1D also with pump and CGM). Unfortunately, he decided to move his practice to California and practice more on the tech end of D treatment and research possibilities. I am still fortunate enough to b staying with my Fave DNP and starting up again with a new endo who ONLY treats T1Ds. I am praying that she can help me to manage all of the illnesses I face along with the medications I must take, etc. All of the Diabetic foes.

SO, WHY NOW DO I COME OUT OF HIDING?

I am exhausted, depressed, in pain (both physical and mental) and just plain old sick and tired of being sick and tired all the time. I NEED to make some major changes in my life and seek out the happiness and courage i left behind somewhere when I started having to care for my father. I was putting myself second, and if i do not take better care of myself, I am of little use to him. There has been a great wave of depression that has washed over me in the past 9 or so months. I just want to pull down the shades and hide in the dark and cry.

I am certain that bc of all of the BG highs and lows of the daily rollercoaster ive been on have contributed to my emotional state of being, The steroids have been my biggest medical challenge as far as D management goes. From one day to the next, I have not had much stability with my BGs. One day they’re high, and the next day i am battling lows. And those lows have been as hard to manage as the highs ever were. But I let yesterday go behind me, and press toward the future with prayers, hopes and dreams. Utterly exhausting.

My father requires 24/7 attention. I have been blessed that I can financially provide him with the asisstance that he needs for most of each day. But despite having a private nurse, a PT therapist, and a team of medical doctors, I have been his one connection to the outside world that he can sit and share time with and that he doesnt have to be bed bound. We can talk, we can smile, we can have lunches and dinners together. Its very challenging though as he is going deaf but refuses to acknowledge that he must wear hearing aides, so every conversation is a screaming match ::weary_face:. His main concerns are “what are we going to eat for (bfast, lunch, dinner, etc), what’s on TV…can we go outside today (hes in a wheelchair), can you bring me this or that, can you cut my hair, can you give me a pedicure…..? “ And recently, he’s become at the beginning stages of dementia. Sometimes he doesnt recognize me, he gets confused easily, and as the days become nights, his personality starts to change from an old aging man to that of a small belligerent child, screaming, demanding, blaming.

One of the things that I find most difficult to live with is that growing up my father was always my hero. He was strong and smart and athletic. He made life fun and exciting. He was at every sports game i played in on the sidelines with a camera, rooting me on. He wouold take me and my two younger sisters to Central Park on weekends and we would go to the Bronx Zoo to ride on the camels. In the winters we would go ice skating and sleigh riding and get cups of fresh hot coco at Rumplemeiers (no longer there). We would go to McDonalds and Dairy Queen and Papaya King, and to Juniors for cheesecake. He would take us to “grown-up” Restaurants and treat us like adults. He taught me how to throw a football, a baseball, how to swim and how to run. He bought us balloons and salted pretzels with mustard in the park. We would buy roasted peanuts and feed them to the elephants in the zoo. My dad made life exciting and grande and wonderful. And when he was still working (in an office) he took great pride in how he dressed himself. He was a Dapper Dandy :blush: Every year for his birthday, I would buy him a tie from Bloomingdales or SAks Fifth Avenue, and he would wear those ties with pride and telll me how he wore this one or that one to the office and how he got so many compliments “Hiya George, what a gorgeous tie you are wearing!” I was always so proud to have him be my father. Now he is limited to sweat pants and tops, has to wear a colostomy bag with a tube coming out of his body hanging by his side. He wears diapers, those compression socks and supportive stability shoes, gets seat-belted into his wheelchair and rolled around the house or around the block in his neighborhood. The parent and the child have switched roles.

So thats what’s been going on and what Ive been doing with my time. I would love to hear back from any and/or all of you. Certainly I am not the only one who has had to care for an aging parent or spouse. Certainly, I am not the only diabetic who has to have been on steroids while struggling to manage blood sugars. I am hoping to start up swimming again in the late Fall. It may not b as much as it had been, but it will b more than nothing at all. I welcome all suggestions and your shared experiences, your hope, strength and prayers ALL the Best,

DM. :folded_hands: :heart:

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I’ve been wondering where you were. Sorry to heard about your medical issues and am glad that you’re able and willing to be wit Dad. It’s great that he was such a good father to you and your sisters.

Juniors is the best. Too bad Kroger stopped carrying it here.

Oh and I know all about steroids and diabetes :confounded_face:

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CarlosLouis, can you share about ur experiences with taking steroids? I would appreciate any info you have. I’ve been on medication, steroidal epidurals, and steroidal sprays. I have had to create a new, separate basal profile, just to accomodate the HUGE amount of basal, ICR, and ISF and bolus insulin for those periods of time. And then do a 200% TB on top of that. Its crazy.

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Good to have you back :green_heart: I don’t have direct experience supporting an aging parent, but my dad and one of my best friends have gone through this. My grandma and my friend’s dad both had some dementia too. It’s not easy at all to be a caretaker… I always tried to remind them that it’s normal to feel exhausted and sad and not to be able to do it all.

I think of our energy as being water in cups. Very similar to the spoon theory. I imagine that we each have a Physical, Social, Emotional, and Mental cup. We wake up each day and some energy has been poured into the cups. We usually get more energy poured when we’ve been socializing, sleeping well, feeling happy. On less good days, we wake up with less water in the cups to begin with.

When we’re going through difficult things, we might have to move our energy around. We’re running low on Physical energy because of chronic pain, so we pour some from Social and don’t have energy to spend with others. We’re running low on Emotional energy because we’re sad to see our parent so different, so we pour some from Physical and struggle to get out of bed the next day. Sometimes we’re running low on all of them at the same time, but where can we pour it from? It sounds like you’ve been in that situation lately, which is completely understandable.

Sometimes we can get some energy from others. Any support is worthwhile. Delegating administrative tasks can help with Mental energy, or someone volunteering to tidy can help with Physical energy. And some other times, we just do our very best, and try to remember that our “best” changes every day. And that our “best” is still good, in whatever form we can conjure it.

Sending you lots of hope and care from afar. :cup_with_straw:

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Be glad to, I was on 40mg of prednisone for 2 weeks and a very long taper off. It was for an immunotherapy rash. Then it changed to an autoimmune condition call Bullous primphigoid that causes blisters. I am on an injectable drug Dupixent.

While on prednisone I was going through insulin like water over Niagara Falls. Then my wife suffered a stroke and is in rehab. I am stressed. Prednisone is external stressor and emotional stress acts much the same to me.

Here’s a link to my experiences.

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Hi @daisymae,
We’ve missed seeing you here on FUD.

It’s wonderful of you to take care of your father. It’s appropriate top return to him all he has given you. It’s wonderful to read about everything he did for you when you were growing up and your relationship with him.

This is a tough time for you. As @RachelMaraii, you have to make sure to adjust your energies for the many different facets you face.

Always feel free to come here for support.

:folded_hands:

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Ditto @dsamuels2300

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Thanks for sharing, @daisymae. Adding my prayers. May God’s peace fill you and give you strength. :folded_hands:t2:

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Hi @daisymae I think @eric and @CarlosLuis, @carol , and @RachelMaraii have expressed what we all here at FUD think (sorry if I’m out of line for speaking for others here) We here at FUD are here for you when you need us, and and will always be available for you.

Dealing with steroids and diabetes is a straight up pain in the a@$!. If you have managed any semblance of control and kept your BGs south of 200 then you should be giving lectures my dear lady because you have knowledge to share. I have never managed it myself, I always lived in the rarified air of 250 - 400 when taking cortisone injections. I get that YDMV, and I also know you run a tight ship with your BGs. Steroids and stress are mighty strong partners when it comes to raising BGs.

Your Father sounds like he was/is an amazing man. We should all have had a father like him. The world might be a better place. Remember the good times, celebrate the joys, and cherish the man while he is still here and knows that you know. It’s very tough watching your heroes become lesser mortals. In reality, they’re still your heroes, it’s you who have changed. I’m not chastising, I’ve been there. It’s troubling to try and reconcile the past and the present. Somewhere though, there is still your hero in hiding. Maybe try conversations about your trips to the zoo or Juniors for cheesecake. Sometimes those older topics bring the heroes back to the present for just a brief moment in time……

@daisymae I hope you are able to make the progress you want on your pain and surgeries to recover your quality of life. Life can be messy, like a three year old having a temper tantrum. It’s ok to not be ok and to ask for help. You might be surprised how many people would turn up to help you.

Henry David Thoreau once said “ The price of anything is the amount of life you exchange for it.”.

I really hate that man…..

I hope we hear from you again soon.

B

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Oh DM @daisymae I’ll just be repeating what everyone above has said (with much more grace and clarity than I will bring to the table)… I’ve been thinking of you and hoping that you were ok. It sounds like you’ve been hanging in there, dealing as best you can with the crap that life has thrown your way. I’m so sorry about your back and not swimming and your dad and just the way life can suck sometimes. I am glad that you are checking in and glad that you see a little light and have a plan to find your way to swim a bit and that you’re finding some joy with your dad with with everything that you are dealing with. It sounds like a lot. Please know that, although we are mostly anonymous avatars online, we’re all real people who gather here not only to share diabetes information, but because we care about each other. We are here for you! I am sending you the biggest, most gentle and loving hug. xoxo - Jessica

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Thank you for saying so. And yes, I did manage to keep my BGs below 200, but it was a true, hard earned struggling of dillengence and vigelance. As I mentioned, I had to create an entirely new profile in my pump just to accomodate the changes I needed. My Medtronic 770G pump wont allow me to do a TB above 200% so the new profile accomated that. And, like CarlosLouis, I was using enough insulin like water over Niagra Falls !!! My pump runneth low frequently :squinting_face_with_tongue: :grimacing: Thank God for Medicare!!!( something I NEVER thought i would b saying) They actually paid 100% of my insulin costs. They also paid for 100% of all my procedures and medications (with a little nudge from my doctors’ fighting on my behalf). Again, thank you. :folded_hands: :heart:

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I’m impressed @daisymae. I never broke 400mg/dl, but close. Boluses from the pump were ignored. I bought some 100u with long needle syringes that I would use to inject 10-12u intramuscular in the deltoids. I had thought about using Afrezza which is fast, but it is fast to leave as well. I needed the speed of the IM with a more lasting effect.

Being T2DM I have natural insulin resistance that most with T1DM don’t nomally have to deal with. The addition of steroids on top of that was a perfect storm.

The other thing, the 2 weeks I was on 40mg prednisone I would wake at 2AM and eat a full meal. The other thing was incredible cramps in my calfs while my electroytes where in the normal range. I slept with a squeze bottle of mustard on my night stand. A dollop of mustard will stop a cramp nearly instantly.

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CL, I am doing the exact same thing!!! I thought I was just battling with terrible insomnia. My husband thought I was absolutely bonkers. But the other night I was wide awake at Midnight and took all my meds (as if it were 7am) and ate a large meal. Went back to bed at around 2am and slept fittfully until around 9:30am. Today I was up at 2am, ate a full meal, felt totally bloated and uncomfortable, two hours later, I went back to bed and just woke up at 11:30am!!!

DM

PS: I have had TERRIBLE AWFUL night sweats. I have the A/C on full blast and still sweat, while my dear husband is shivering in full flannel PJs.

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I forgot about insomnia. What’s your steroid schedule? Is it once or more times per day. If once, take it in the morning. That won’t do anything for your BG but may help you sleep through the night.

The other thing with oral steroids, it’s good to take something like Prilosec. Steroids can harm the stomach.

I didn’t have night sweats but I did get uncomfortably warm at night.

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Lately, I have not been taking oral steroids, but am getting steroidal epidurals regularly into my back for my spinal pain. I am beginning to wonder if the surgery I had 5 years ago was worthwhile. Its hard to look back and think, “why didnt anyone tell me about the consequences of this surgery? What did I exchange the different types of pain for?” Also, why do some meds work wonders for most people but not me? So many people who have had similar surgeries as mine take Gabapentin and say it works tremendously, and for me, it doesnt do more than cause edema and anxiety? Arggggg. :grimacing:

I am also on heavy duty pain meds. I currently take 10mg of Oxycodone 4/day, 10mg of Meloxicam every morning, 5% Lidocaine patches twice a day, and 800mg of Chlorozoxasone 4/day. I was on Percocet, but that has Tylenol in it, and my Liver enzymes were going through the roof. The doctor was befuddled at first, but then switched me from the Percocet to the plain old Oxycodone. He told me that if this combo, with the regular injections (Epies, Trigger Points, Branch Blockers…) we would have to get more creative with the pain medications. I am not certain what he meant by that, but bc I take so many different meds (most for my schizophrenia), i am a hard act to handle. :weary_face:

PS: sometimes I totally miss the mark on bolus guessing. How much do i think I need for this meal, while my BGs are XYZ? Ive experienced some scary lows as well. I crashed down to 26 the other night last week during dinner. And again the next night i went down to 44. Its so frightening to go so low, and of course, once low, I eat everything in the fridge and am off on that terrible roller coaster ride of BGs for the next day or so. So Low, So High, absolutely no middle ground. My mood is shot and I am utterly exhausted emotionaly and physically.

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CarlosLouis, did we even broach the topic of weight gain?

DM

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Oh my yes. I’ve lost some but am currently 19 lbs too heavy.

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Hi DaisyMae.:slightly_smiling_face: Thanks for sharing so openly. You’ve been carrying so much, and it’s amazing how strong and loving you’ve been for your dad while also managing your own health.:heart: It’s totally okay to feel exhausted and overwhelmed, you deserve care and support too. Swimming in the fall sounds like a great goal! We’re all rooting for you and here if you need encouragement. You’re not alone in this. :yellow_heart:

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I forgot to mention that I am on nasal steroids twice a day every day. My husband pointed this out to me. It just never dawned on me that the spray would have any effect. Since my husband pointed this out to me, I did an experiment (just this past week), and stopped using the spray; my sugars came down a bit, but nothing so significant as when the steroidal epidurals have weeks after getting injections. Does anyone else on FUD take nasal sprays with steroids in them? I would love to hear about your experiences. Thank you in advance.

PS: about how long does it take till the side effects of steroids take to leave your body? Ive noticed that with the injections, the first 72 hours-one week are the absolute worst. Then the highs just stop. abruptly. no “wearling off” at all. And no particular pattern to when and why. Each time has been different so I have to monitor my sugars very closely to watch any significant changes in BGs so that I can return to my regular basal (and all other) profiles (ICR, ISF, BOLUS,etc)

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