Archive for the ‘fibromyalgia’ Category


I have a lot of thoughts that are combating the issue of palliative care regarding in-the-home versus in nursing homes. In the early-ish part of the summer we received the news that a nursing care home finally had an opening for both of my grandparents. I should clarify that the “finally” part is really due to the fact that it took a long time for them… well, I should clarify that “them” is really my grandfather agreed to the move and my grandmother threw the mother of all tantrums, but relented. Once my father and uncles made the decision for my grandparents, and once they informed my grandparents, it only took a month or so for a health care facility to open up space for them.

There was relief in this. A lot of relief, actually. The fact that they would have on-site 24-hour nursing care and a doctor on staff. Their doctor would be on call. Emergency care would be available instantly as needed. There are a couple of hospitals within minutes from the nursing home, if needed.

As soon as they moved in, my grandfather felt relief. He could see that he really wasn’t able to take care of her any longer. That was hard for him. Not being able to pick her up when she fell was something that had been normal for a long time, but the emergency paramedics finally told them that unless she agreed (or he forced her) to go to the hospital when they called 9-1-1 and she was clearly injured (she was) then they were going to stop coming to the house for her. Whenever he fell, he knew enough to go to the hospital. So that was the tipping point.

I spent my summer with the girls, off work and visiting my grandparents as they adjusted and took turns with one being upset at being there and the other saying how wonderful it was. Yeah. Being in your 90’s and married for 70 years can be like that.

A week ago we held a party for my grandparents at the nursing home for their 70th wedding anniversary, and it was beautiful. My grandmother looked beautiful. She held her rosary the whole time. As I was growing up, and let’s face it her entire life and mine since at 40-something I still feel as if I’m growing up, she always put herself last. She always put all of her focus on the person who was in front of her. She made everyone in that room feel special, and so when they came for her and my grandfather’s anniversary, they made sure that she felt special.

She wasn’t quite herself, and I could see that. The entire week prior, she’d been declining. Her mood shifted. She started seeing hallucinations. Night time was the worst. She hadn’t slept for two or three nights, and so the day before the party, when I visited, they made sure she slept. She was in a great mood for the party, but something had changed. She knew who we all were and why we were there but she heard music that we couldn’t. She asked and talked about odd things, for her.

And then this past week things got worse. My grandfather and uncle swore to me yesterday that she wouldn’t recognize me, but she did. She couldn’t move much, but when I held her hand she held it back as much as she was able, and even lifted it to point at my youngest daughter when she wanted to see her. She would pucker her mouth and move towards us when she wanted kisses. The whole time since being in the nursing home, that’s all she’s wanted, is kisses.

They swore she wouldn’t understand anything we said to her, but she did. She tried to talk to me, so I told her about my girls and my husband, how school and work were for them and how much I’m enjoying being a stay at home mom again. I knew she wanted to know about my pain levels too, but I avoided that topic. I told her that I finally prayed for what she had asked me to pay for, for her and that I’d done so at Church yesterday morning right before coming. She blinked a few tears and tried to nod, leaned for kiss, and I cried. I told her that I prayed for it even though I didn’t want it, because I know she needs it and she’s ready, and because I love her. I told her that I love her no matter what, and that I’ll be okay, that the entire family will be okay and she can let go.

We stayed, Darling Girl and I, for hours with her. It was very difficult to leave. We let the nurses know we were leaving, and then we saw my grandfather coming down the hall from his room with a priest trailing behind him. He told me that the priest just got there, and could I please stay. This was their parish priest. He was there for Last Rites.

So of course I stayed. We stayed. I held her hand. When she saw her priest, she gasped and said his name after not being able to speak for a few days. My grandfather was shocked because he had been 100% sure that she didn’t… couldn’t recognize anyone and nor could she understand what anyone said. It was beautiful from start to finish, and I never thought it could be. Maybe it was beautiful because it’s what she wanted.

Now it’s Monday morning, and my Darling Girl is sad. This is making her think about when my husband’s father passed away four or five years ago. It’s very similar, but she didn’t understand what was happening then. She told me this morning on the way to school that she’s remembering what happened to her Nonnu, but with a new understanding and so she’s feeling the experience of his death all over again as her great-grandmother is dying.

What she’s having trouble understanding is how my grandmother could be choosing to refuse to accept her medications, even the pain meds; how she could be choosing to refuse to accept any food or water. At 12 1/2 years old she knows how long a person can without food, and without water. I don’t know how to explain that to her, how a lifelong devout Catholic could choose, in her mid-90’s, to stop it all and to leave directions for the nurses, doctors, and family to refrain from any extreme lifesaving measures. It’s not rational to my daughter. I told her that as much pain as her great-grandmother is in from her illnesses, she’s in far more pain when she eats and drinks because her insides don’t work as well any longer, and she wants the pain to end. That didn’t satisfy her, and I know that nothing will. It sounds weak in my ears too.

Also this morning, Sweet Girl was having a really difficult time. She asked me last night to explain what was going on. She was more angry about getting up than usual, and complaining about everything that’s ever made her angry. I nearly lost my temper with her, and when I realized that my temper was shorter than usual I knew it was because of my sadness and the anxiety of the vigil. I realized my mistake, shifted gears and told her I recognized how sad she must be, and she could visit with me after school but that I won’t force her. She finally managed to cry, sad crying, and it seemed a relief to her to be able to identify with words what was wrong.

Dearest Girl, my eldest, turned 17 yesterday. She was amazing about me spending the day with my grandmother. She seems to be holding up well on the outside. In that way, she’s a lot like me. Being the eldest, like me, it’s natural. I know that she knows she can talk to me; she will when she needs to talk.

I don’t know how to do this. It just feels as if I’m doing it all wrong.

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That moment when, even though you feel guilty for multiple reasons, you do something that changes your entire life.

I turned in my resignation. I did it. I did it with a letter. This time, my boss didn’t try to convince me to stay after our long discussion. This time, she understood. 15 months ago, she convinced me to stay, “just until the annual meeting,” and I promised that I would. I guaranteed her those three months, and then, “we’d talk again.”

This time, when I turned in my resignation, she had already announced her own retirement.

I have five days left, including today, and I promised I would finish up my notes for my files. I hope that I can. I promised I’d stay an extra day or two if I couldn’t finish up by my last day. I’m a sucker. I really am. I don’t know why I didn’t just keep up with my notes as I went along.

Yes I do, that’s a lie. It’s because there’s been so much work piled up with my consumers and at some point, it was the paperwork that took the hit. Now I’m paying for it. It’s okay, I’m not taking new people on. I’m wrapping up and passing my people on to coworkers because that’s the way it goes here.

So today, there’s a Board Meeting. It’s a mostly-new board with a brand new Board Chairman and he’s pretty awesome. He’s got a lot of energy and brings a lot to the table. I forget how it came about, but at the annual meeting he ended up offering to buy me a cup of iced coffee as an apology for something, and I forgot today was the board meeting so he chastised me for not e-mailing him with my favored coffee flavor. I told him, then hedged, and told him that Friday is my last day because he offered to bring the coffee next week. He seemed genuinely bothered, so I explained about my health and current family concerns, but how much I love the agency and the people I work with. He asked if there was anything the board could do to keep me here and stated that if I change my mind after a period of time I’d be welcome back any time. I told him that meant a lot to me and I’d keep it in mind.

That was kind of awesome.

Now I only have to worry about getting my SSDI application completed, and waiting three months or so for them to respond with an approval. But I have to actually stop working first. I’m nervous. I’m really nervous. This whole thing is a huge life decision. It changes my life, my husband’s life, and that of my children. I realize that it also affects the work place that I’m leaving.

I have to be selfish this one time. I have to listen to my body and my family. I can even take this as a chance to talk to my daughters about how this choice still fits in with being a feminist.

It’s time to do this. The rest of my life is about to begin.

 

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Equality. When women and other protected classes fight for equal rights to be recognized legally and for discriminatory practices to be made illegal, we are not infringing on the rights of others.

We are not diminishing the value or equality of others.

We are maintaining that others hold no superiority over us.

We are asserting our rights to make choices for ourselves in all things, as intelligent, empowered, sentient, educated people.

We are advocating for those who may not have as big of a voice as we do, who may not have as much education, but still deserve all of the protections and rights as we do.

We may make mistakes along the way, as all movements do, but we have momentum and we have justice on our side.

I get to parent three incredible daughters. My daughters and I have conversations about important things. I teach them by example. My hope is to raise them into strong, caring, loving, and generous women with high self-esteem and a good education.

I want them to be confident in their talents. I want them to continue to be self-advocates and to advocate for others. I want them to continue to choose good, supportive, and positive people to help raise them up. I want them to continue to value their family and friends. I want them to know that they have choices, and they have these choices at any stage in their adult live; that it’s never too late to create a dream and work towards it. 

Being a feminist means recognizing that the world is open to us with unlimited choices, and moving forward to remove boundaries in society.

It’s a daily fight in legislature, a daily prayer, daily action, and daily modeling of behavior.

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As a life blogger, it’s not exactly a rare thing to have difficulty choosing a topic and writing about it. Writer’s block is a real thing. 🙂

What I’ve been having trouble with for the past month is on the other end of the writing spectrum of difficulty: I’ve been trying to write about the dumpster fire that is the current White House Administration and fraudulent president, but every time I try to write something it’s either obsolete before I finish writing or there are six other things that should either be added or have their own entries.

While I thought it would give me satisfaction to watch Trump go down in smoke and flames, while I dance around him pointing at those who voted for him singing, “Told ya so!” it’s really giving me no satisfaction at all. I’m not dancing. I’m not laughing. I’m not singing.

I never really wanted to do the dance. I do enjoy, a little bit, the occasional pettiness of telling someone, “I told you so,” but I’m sporting about it. I tell them ahead of time that if I’m right about something and they go ahead and do the opposite, that I’ll say, “I told you so.” I’m equally sporting in that if I don’t give the warning, I won’t say it.

I did want to be wrong about Trump with every fiber of my being.

I’ve prayed harder than I ever have in my life for his success; for him become a true patriot; for him to care about others besides himself; for him to be ethical, moral, kind, compassionate, generous, and to be so even when it’s in private and not a photo op; for him to be honest, truthful, and to expect the same high standards from those he surrounds himself with.

What I am is embarrassed, ashamed, fearful, and anxious that what I thought could happen was far exceeded prior to 100 days. Those feelings have doubled in the days since April 29th 2017.

America is viewed globally as weak and as a laughingstock. We are viewed as extremely volatile and dangerous. We are viewed as ignorant and undignified. After all, we “elected” a man without education, class, morals, ethics, refinement, nor any sort of interpersonal or soft skills and is utterly lacking in business skills or common sense.

Because I simply can’t get into everything without my skull imploding and my fingers turning bloody from typing, let me share this:

We have “no way to know” if the Russians bugged the Oval Office when they visited Trump the other day. No way to know? NO WAY to know? Please, Mr Tillerson… Rex…  Please Rex, give us something anything please oh please give us something more than “we have no way to know” please omg please are you fucking kidding me? We don’t have some way, I don’t know, using some sort of technology from one of our intelligence agencies or something to detect bugs? Are we really that inept? Or are we that broke? Do spy movies and TV shows have a bigger budget than the White House Security and NSA for really cool anti-intelligence spy intelligence technology shit?

How about you reassure us that the Russians being confused about what was supposed to actually be considered classified material during that 25 minute meeting isn’t far more concerning than it sounds? How about reassuring us about the fact that Trump shared 50 unscripted things with them? You know, classified thing; things he wasn’t supposed to tell them that are apparently, you know, considered classified. Were there any launch codes in there? Locations of black ops teams? Details about our fighter jets and missiles? Mrs Field’s Cookies recipes?

I’m thinking that what the Russians are really saying is,

“We’re confused. What classified intel do you think he told us… that we didn’t already know?”

I’m a mother. I’m a wife. I can read between lines.

It’s pretty easy to read this: stop saying that Trump “allegedly” told the Russians classified material. It’s not alleged when he admitted publicly that he did it. He can’t even keep a secret in 140 characters or less on Twitter, did anyone think he could or would keep State Secrets from Putin?

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Last week I had a neurology check up. I love this guy. He took it very seriously that I had a migraine that was on its ninth day, and showed no sign of alleviating. I’d been taking my daily med religiously; I’d been taking the Imitrex when it got out of control. I’d even been taking Advil on occasion in order to make it through work. I told him that I’d missed two days of work in spite of it all, and wasn’t sleeping even on the weekend.

He prescribed Prednisone, which he said would likely leave me feeling wired like after having way too much caffeine. He said not to take the Imitrex with it, because the efficacy of the Imitrex would be non-existent while on the steroid. I should feel better after the 2nd or 3rd day, taking 5 tablets the first 3 days in the morning; then 4 tabs; then 3; and so on.

I started the Prednisone on Wednesday of last week. I’m feeling “better” but the weather we’ve had hasn’t entirely helped. I’ve had restless sleep thanks to pain, which of course hasn’t helped. Over the weekend any rest I attempted was interrupted by the girls, the Mister, or Leo calling for his Mama. That dog likes to wake everyone up by 7:30 am. If I’m not downstairs by 8:30 am on a weekend he calls me specifically, with this whiny barking that gets urgent, so I end up having to go downstairs to let him hug me. Yup, he’s a hugger. I had to train him to be a polite gentleman dog and hug “properly” so that he wouldn’t knock me down. Goober.

I think that if I can get some long, uninterrupted sleep while on the Prednisone, it’ll work much better. The cats like to take care of me when I’m in bed, so they won’t be a problem. It’s the rest of the clan. 🙂

I went to work today, and I’ll be honest, I should have stayed in bed after the kids got on their rides to school. The Prednisone isn’t wiring me up, it’s making me sleepy. Neat trick.

What worries me at the moment is that if that damned Trumpcare bill passes? Migraines aren’t covered. I could be denied healthcare coverage simply for my migraines. Forget everything else I have to cope with. Migraines can keep me from any sort of healthcare insurance because the bill, if passed into legislation, will allow insurance companies to deny me coverage as a pre-existing condition. That means out of pocket if I see my neurology; if I have to go the emergency room for debilitating migraines that only the hospital can handle; for any of my migraine control medications. That’s thousands upon thousands of dollars a year. If they deem me suitable to cover at all, migraines alone could raise my premium thousands upon thousands of dollars a year.

Just the migraines.

I’m not talking about a little pain in the head. I’m not talking about a headache that some rest and avoiding sex for a night will take care of.

I’m talking about truly debilitating problems that are neurological in nature. Migraines are painful in the eyes, behind the eyes, in the top of the head, behind the head. They cause vision problems. There are sparkles, floaters, auras in front of the eyes. There’s tunnel vision. There’s blackout vision, where nothing is visible at all. There’s vertigo. There are auditory problems, sometimes a blocking of the ears and sometimes hypersensitivity. There can be auditory, visual, tactile, and olfactory hallucinations. Any combination of these symptoms can cause nausea, and vomiting. Fever can occur during migraines. Difficulty and slurring of speech can occur. Inability to walk and stand upright, or even to sit. Light sensitivity. Skin sensitivity.

There is a complete lack of function. It’s debilitating. Literally debilitating. The worst of a migraine is like having a seizure and stroke at the same time. It takes a lot out of you physically and emotionally. You want to scream, cry, beg, plead, but you can’t even think straight let alone speak. You’re forced to ride it out.

Luckily, most of the time mine have been under control by taking Topomax daily. I take the Imitrex for breakthrough migraines that need to be put under control when Advil doesn’t work. After a week, more than that, when that didn’t work, I finally needed to figure out what to do with my doctor. And if this doesn’t help, I don’t know what the next step is. But we’ll get there.

I’ll only get there if the current law, the AHCA, remains in place.

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When it comes to parenting, the books don’t always have the answers. Each book has a special parenting method, and if you just stick with that special method you’ll have amazing children. They’re grow up to be well behaved, respectful, intelligent, daily blessings of joy and love.

Those books are lies.

Most parents figure that out by the time their children are 1-to-2 years old. Sometimes it takes longer, but that’s likely due more to the temperament of the child and not the stellar parenting as followed from the advice in those books. They just might make it to 5 years old, but if that child really is just a totally chill little human being, it takes having a second child with a completely different temperament.

The books were worthless except as kindling until our third child. By then, I had realized that it’s not the book but the child, and every child has a different mother.

Every child has the mother they need because they’re all different people. The books should really only address the care, when it comes down to it. We need books that are honest and straightforward that will be Actually Helpful to new parents of babies, and stressed out parents of toddlers and teens.

Books parents need:

Mostly Judgement-Free Parenting Series

“How to Feed My Baby: Until he’s not hungry any more”

“How to Diaper My Baby: What’s best for your wallet, your tolerance for cutting coupons, your love of Pinterest, and ability to sew”

“The Best Ways to Get Baby to Nap: Learn baby’s sleep patterns, then work around it”

“How to Get Baby on My Schedule: Ha ha ha ha ha ha ha!”

“Toilet Training by One: Good luck with that one”

“How to Feed a Picky Eater: Give her what she likes”

“Discipline? Yes, always, your child is not your friend or best buddy”

“Discipline: You have more options than ‘spanking’ and here they are”

“Going Back to Work After Baby: Why not, after all Dad gets to and who’s to say that Dad shouldn’t be the stay at home parent anyway?”

“Staying Home/Going to Work After Baby: Budgeting, Care for Baby, Scheduling, Family Time, Let’s Work it Out!”

“How to Prepare for Going to the Hospital for Baby: includes a tear out sheet of “List of People to KEEP OUT OF L & D and Maternity” to give to hospital staff so that you won’t have to be the bad guy to family that you don’t want there!”

“Reasonable Expectations of Success and Mistakes: your child isn’t an extension of you”

“When Friends, Family, and Strangers Offer ‘Well Meaning’ Parenting Advice: Smile and Nod, and other non-violent methods”

“OMG My Teenagers Are Trying to Make Me Go Gray Overnight! and other things parents of three teens have been heard saying”

“Organic and Homemade! the story of the crunchy mom, whose baby ate only organic until he tasted his first Twinkie and realized there was an entire aisle of the supermarket his mom had been hiding from him, and other stories of perfect parenting gone awry”

“How Not to Say the Wrong Thing to My Teens and Make Them Cry, the story of the mom with three daughters, so really you have to know that there probably won’t be a happy ending to this story”

 

 

Yup… I’d have bought those.

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I have good news! Are you interested?

I went to my pain management and spine specialist last Wednesday after work. During the appointment we went over the X-Ray results for my hips and lumbar spine due to the exacerbated pain I’ve had since the fall my beastly dog caused on a walk. There was a concern that my hip fractured or broke.

I’ve mentioned before that my lumbar spine already has bulging discs. The X-ray was for just the lumbar and hips, and since my MRI during the summer, that’s deteriorated, likely due to the fall.

Neither of my hips, which have arthritis, are broken or fractured. That’s the excellent news. The arthritis, however, has also deteriorated and has done so more significantly in my left hip. That’s likely due to the fall.

I’m relieved that there aren’t any fractures. That means that we can take “putting a pin in it”off the table. That’s a huge relief. I guess now I’m wondering what my treatment options are, because I met with the APRN instead of the doctor. When I have pain that, in the moment, is at least a 10 what do I do? I can’t support my body when I’m standing up because the pain is so severe. I feel as if my skeleton is being ripped apart and shattered with a hammer. It’s scary, and it takes my breath away.

Since I’m 42 and never had a bone density test, I’ve requested one to be ordered. I know that it’s been an issue in my family, and with the arthritis, maybe it can help with therapy. I’m already doing aqua-therapy but anything at all that might help relieve this pain and I’m in. The APRN didn’t indicate that the degeneration is severe enough for surgery to repair the arthritis, so I’m guessing that’s not an option right now. And honestly I think that has to be a last resort.

It’s funny, though… my PT for aquatherapy seems to think that surgery with additional PT is preferable to additional medications. She has Fibromyalgia, too, so I’m assuming that she’s aware that every time someone like us has a surgery it further suppresses our immune system because the body has to fight so much harder than is typical to heal, and to fight off even simple infections and illnesses. We also have to cope with having all of the medications administered during a surgery coursing through us for months which affects the medications we’re already on. Anesthetics stay in the body for up to two years, especially when it’s administered in large doses.

I would rather exhaust all other options before considering surgery. Just like before I agreed to try pain medications, I exhausted every other possibility first. And sure… I kicked myself and wondered why I didn’t go to the pain management specialist years sooner when my PCP first suggested it, but this isn’t the same thing. I have a hard enough time healing from paper cuts. 😉

I know, I’m putting the cart before the horse. It was just a conversation I had with my PT on Friday. I’m just trying to work it out in my head a bit. And maybe the APRN didn’t let on how bad it really is. She’s been known to do that.

Oi. I need chocolate. Good chocolate. Better yet, I want someone to give me good chocolate.

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