STEAM ROOM FOR ANGER
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I had several doses in MO office and to double up on calcium intake plus walking a lot which is bone building. I got at least stable enough to go on regular calciium and keep walking and right now no Prolia. She still checks it though regularly.
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I inject myself daily with Tymlos (and I am the world's biggest wienie about needles). If I can do it, anyone can.
So far, Prolia cost me more the two injections I got than Tymlos is now, even though Tymlos is more expensive. That's because they've got a really shady program where if you HAVE private insurance, you can get assistance. I think it's to coerce more insurance companies to cover Tymlos. Really makes me angry to think that if I lost my job and thus my insurance, I would be screwed because there's no way I can pay for Tymlos out of pocket.
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I need to clear something up from a few weeks ago. My memory is bad and my cognitive processing is worse. This is the result of the Covid vaccine. Someone used the words "bad doctors" to describe my situation. I am not talking about bad doctors. I have very good doctors. But something went terribly wrong. I am partially paralyzed since two weeks post vaccine. Worse, my cognitive functioning is impaired. This did not have to happen. But the way the medical system works (or doesn't) it happened. I went along with the status quo. I did the usual. Just average. But my medical issues are not average. I have MS that has never been treated. My choice. I have never gotten a vaccine, not even a flu shot. My choice. I am very protective of my immune system. I have survived to age 72 with only mild disability. Then Covid. The whole environment led to my condition including a dysfunctional medical system. Am I angry? Yes. Can I point to one mistake that anyone made? No. It was an imperfect storm that led me here. I don't know when or if I can let this go.
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I am sorry you are dealing with memory loss. It could be a whole other issue gong on though. As someone who has been diagnosed with primary progressive aphasia (a form of frontal temporal dementia) I have been on memory meds for about a year and half now to help keep my memory as long as possible. I am only 60.
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jaycee, I'm so sorry about what's happened to you. Yes, the imperfect storm.
The medical system. Further to an earlier discussion about administrative costs, in the following article, the comparison of administrative costs to spending on cancer and heart disease makes me want to blow my top.
"By now it is no surprise that such burdensome administrative tasks are choking U.S. healthcare, consuming millions of hours of practice time and hundreds of billions of dollars annually, far more than what is spent per capita in any other economically advanced country. A recent study estimated that healthcare administration in the U.S. costs more than $800 billion a year. Almost a third of that outlay, $265 billion, is spent on unnecessary regulatory and administrative tasks. That's more than the U.S. spends on either cancer or heart disease."
The Crushing Burden of Healthcare Microregulation https://www.wsj.com/articles/the-crushing-burden-o...0 -
jaycee, would an MS infusion treatment help? I don't know much about MS just thought maybe it would counteract your symptoms and by the time it wears off you will be back to some sort of normal.
I am dreading that this month will be 1 year. Must we have such things like cancer and death anniversaries?? They should invent another word. It is so hugely pointless as we deal with cancer and death every single day not just on that day!!!! I did request a vacation day that day. Who the heck knows what kind of shape I'll be in that day? I'm mainly OK, but not really. I am living in fear. I have recently upset my daughter by having a meltdown with her on the phone. I should have had the meltdown by myself! Now she's checking on me almost daily, so then I have a 2nd meltdown although that one was mostly wine induced, and she had several people check on me. I was drunk asleep and didn't answer my phone. Very remorseful that I worried her so. She has her own life. We will be OK, she always says we're like the same person. I just feel horrible that I piled on her while she's also getting ready to make a life adjustment. She and the boyfriend are looking at moving in together and she gave her notice. Oh boy, today she's texting me about it so I'm giving her my input. She originally thought she could live between my house, the boyfriends apartment, and the beach cottage in June and July and start a lease in August. She's very conservative with her money and saw this as being a savings. It seems she's coming around to the idea she really won't be saving much. I wouldn't mind having her, she's already brought some stuff in. Just what I want, more stuff! It's temporary though, and surely this will all work out. I hope.
What triggered my 1st meltdown was the beach cottage. It's no where near ready. It's May and everything that still needs to be done is just beyond my skill set and control as well as it is not my property! My daughter advised me to take a break, so I am. It can sit there for all I care, no electricity hooked up yet, no pipe found that goes to the septic system yet. Why should I continue working inside with no toilet? I can't do it. Maybe in another week or two I'll feel differently. My son and I did an outdoor project at my house this past weekend. At least I felt like I accomplished something. He bought me 2 tons of stone for a Mother's Day gift, and we put it around the deck. No more weeding!! Last summer me and the kids had a wonderful therapy session ripping all the plantings out of there. It's been something we've wanted to do and just never got there. Now it's done.
I'm starting to ramble now. I'm just dreading getting through the 24th. Right? Just don't text or call, I know what day it is. All my other friends and family have been with me all year, and I still have them. I wanted to honor him by having electricity and plumbing at the bay. Did I mention he was a plumber? Ugh. Also, people saying the 1st year is the hardest, um I'm not doing much better in a year, in fact, I think it's harder. So, I've been doing some reading and will continue to in hopes I will find better coping skills and less triggers to my stressor. I hate living like this, but since I have no choice, I need to find a better way of coping.
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Hugs to you. Know a hard time for you right now.
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ctmbsikia, We're all here to support you if you need to crumble - or crumple - a bit.
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I got the vaccine on March 8. Huge MS exacerbation two weeks later. No recovery yet. Probably won't happen. I am trying to accept what happened to me. I am struggling. Still. Both physically and emotionally. Very hard to process. (Already had a megadose of steroids.) Sorta like stage IV cancer. No recovery. Ever.
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ctmbsikia, the anniversaries are always tough. I'm at over 20 years, and that day, and almost more so the day before, are still always so difficult. I don't mind because it's a reminder that no matter how many years it's been and no matter where my life is now, it's not something I've left behind, and there is some comfort in that. At the end of that anniversary day, after all the anticipation and dread, for me there is a tremendous weight lifted, the relief that I got through it.
I hope you do find that the first year is hardest; it doesn't mean it will be easy from now on but hopefully the lows aren't quite as low, or there are fewer of them. It's too soon to know that yet because you're not out of the first year yet - and the anticipation of the first anniversary, and the day itself, is pretty bloody awful. As I see it, it's not necessarily that it gets better over the course of the first year, but more that once you are into year 2, you've experienced everything once already - all the birthdays and anniversaries and significant events - so it's not as shocking and painful as when you faced those days alone for the first time.
You'll be fine, and I'll be right there with you.
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My DD and I usually exchange some short text daily before 7:30 am. A joke, a meme, nothing important. About a week after DH passed, I slept late. Till about 8. Awoke to the doorbell. Stumbled to the door, 2 cops standing there. Huh? Can I help you? Your daughter called, is concerned, are you ok? For the moment yes. Be still my heart.
The ONE day I sleep late. So I sort of chewed her out. I know she meant well, but told her NOT to call the cops again unless she didn’t hear from me by 10.
He’s only been gone 5 weeks. Lots of stuff to do, remember, clean, call. I write it down immediately or I’d forget. The dog park is my happy place. Each of us has their own. Do what makes you happy.
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ctmbsikia and Spookiesmom, a friend of mine posted this on FB today. It sums up the experience perfectly.
Hugs to you both.
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Ctmb, I hear you. A friend of our family diagnosed with triple neg bc a year after my diagnosis passed just about 18 months after diagnosis and a short remission. Her husband says the hardest part is those that post or ‘remember’ her on her on the anniversary of her death. She died the day before my sons birthday so it strikes a cord every year. That said we remember her and celebrate her on her birthday. I know that helps her grieving family, husband and young daughter. I don’t think it helps with my survivor guilt though. I am glad to be here with my own children and I think of her daughter often.
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Spookie, CTMB, it is unfathomable that a heart can hurt so much and still keep beating. For both of you, I am sorry.
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Widow brain is like chemo brain. I think I’m doing ok, as long as I write it down. I think I’m done with SS, one more big thing, probate, then nothing is urgent.
Bessie that post is soooo true.
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Spookie, are you handling the will yourself? That is a super human task in some cases. My mom did not hand the will over to a lawyer when my dad passed. They wanted a ghastly amount of money and mom said, go to hell you thieving bastard. So she did it all herself. My dad's estate was very complicated. He had multiple business interests with many different partners across many provinces of the country. It took mom 27 years to get it all finalized. TWENTY SEVEN YEARS!!! I don't know how she did it, but the woman is an uber list maker and note taker and file keeper. She leaves nothing to memory but makes a life choice to document everything. It's the only way to keep track of things. So make your list and good on your for knowing it's a sensible and helpful thing to do!
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27 years? Holy Hanna! Hubs stuff was fairly easy. He helped on a remodel job once for a lawyer and she just loved him and she did our wills for us as a bonus. We rent so no real estate involved. All he had was his money and his stuff. One bank account was solely in his name, but no problem getting that closed with the will and a death cert. The funeral home took care of notifying SS, all I had to do was write a really large check. At least now my kids know where everything is and what to do with me when I go. Just out here riding the one year wave. It hit hard, but I am a little better today (this week) as compared to last. Talked to my daughter last night and both of us said a day at a time, sometimes it's an hour, sometimes you just have to breathe and not think. Anyway, we made no plans for this weekend as both of us are just so exhausted.
Thank you all for listening.
Spookie, I'm so sorry. Glad my daughter didn't call the cops on me! Also glad you have a happy place to go. I should try and find me one of those!
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The wills, cremation was taken care of many years ago. Paid for too. Burial spots, not picked. I know he wanted to go back north, he hated it here. I don’t want that, so may be scattered here. Cremation place handled SS, I still had to call to arrange to get his larger than mine, deposited into correct account. He had a business check acct, those asses wouldn’t accept his death certificate and give me the $$. So back to lawyer and let them deal. At least I know it will be done correctly. I don’t have the energy to go stomping around the courthouse to do it. They said it would be a few weeks depending on how busy judge was. That’s ok. If I didn’t have the dog park, I’d go crazy. And never get out of the house except for groceries and doctors. See and talk to people. Plus, the fur kids bug me to go.
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it will be 4 years June 9th of the death of my husband, I can honestly say that was the worse thing to have happened to me in my life. If i could bring him back, I would not, because to lose him all over again, would the worse kind of hell. I Miss him with every fiber of my being God I miss him.
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I’m sorry.
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Gamb, I can't imagine it and it scares me to even try. I am so sorry.
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Sorry Gamb-wishing you peace in the upcoming month(s).
What an emotional roller coaster trying to figure this new identity and purpose in life. I understand now why they call it a process. It is. It comes in waves for me. I got my 2nd covid shot on Mon, had dinner for 4 of my high school (42 yrs!) friends on Tues night, another friend bought dinner to me last night. Can't tell you how truly blessed an spoiled I am. It really does help. My sister in law is making cushions for a bench and chairs that will eventually be going to the cottage. Surely I will be with my children this weekend, and I am hopeful we will share in a moment of joy with each other, and yeah perhaps a few tears too. We have no plans really, just going to live it since that's all I can manage right now, and that's OK. I think I was putting too much pressure on myself trying to attain unreachable goals.
Anyway, doing better this week. Wishing all of you a wonderful weekend and Mother's Day.
Hope you don't mind me sharing some photos:
This is the stone around the deck @ home.Below are the cottage:
My son testing the lights by hooking up his generator up to the box. Still waiting to be hooked up to the pole.
I (we) painted these and put some cute hardware on. The electric hot water heater is going on the one on the right. It was a total debacle figuring that out.
There is still some insulation there but not enough to finish. Also need more work done outside on both cottages, so that's my next step. Whenever can get my son, his buddies, and another guy that helped my husband together to do that.0 -
Love your pictures!!!
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Re Beesie's comment above from her friend on Facebook: I'm not equating widowhood with divorce at all, but I felt everything in Beesie's friend's post following divorce, and I've never been the same.
Spookie's Mom - So very sorry.
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Minor rant so I don't respond to the trolls on SM, lol. Why is it that in the comment section of every Covid #'s announcement, there's always those people who trot in with the whole "YeAH bUT wHaT aBoUt aLl tHe PeOPle wHo gOt CaNCer tHis YeAR?!?!". And every single time I've seen this, it is from the account of an anti-masker, covid-denier, "mah rights" freedom "fighters", not people with cancer who are tossing these statements out as a way to undermine the seriousness of covid. It's usually complete with some false stats etc.
I have a hard time believing that these people actually give a crap about cancer patients or for that matter how vulnerable they are. I want to scream, stop using my disease as fodder for your covid-denying arguments. I hate it so much.
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ChemicalWorld, they're idiot bullies who use "Whatabout" for EVERYTHING because they don't have any facts. Or sense. Or compassion.
If they were zombies, they'd all collapse because they're allergic to brains.
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ChemicalWorld, I loved your post. The anti-maskers and the anti-vaxers just give me the shits. I just want to say to them if you can't wear a mask without crying about it, don't ever ask me for a single f---ing thing ever, not even if it could save your life.
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As vaccines in our area are readily available, I'm not allowing visitors to my house who haven't gotten it. Including plumbers, cleaning people, my book club members. Drives me nuts that they want to "wait for results", really? They don't know sh*$ about drug trials. Don't care that they could kill me.
Best one I heard was vaccine contained a chip to track your location (can I see your phone, is your location "on"?) 0 -
Already told my stupid brother who says he won't get it because it is "rushed" (he is a NURSE even). Lives in Texas. Told him even Trump got it before he left the White House (he is a Trump fan). Told him not welcome to visit and cannot come see our mother who lives here in Colorado either. We would not be visiting them at at all ever. Not worth the risk. He is high risk for health conditions, my dad lives lives with him who is older than my mom (he has his now or will be done soon at least), wife has health issues and adult daughter who is handicapped. You would think he would have enough sense. Had a big fight with him on the phone about about it. Gave up. Will never see him again as I live now. Sad.
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The vaccine destroyed my health. I am devastated. Not everyone is the same. I appreciate your position but there are outliers. Mine is a special case. My health has been sacrificed for everyone else's. Is that fair? No, but that is how the system works. I've posted about this before but I am ignored. Who can accept this? I am having real issues with acceptance.
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