Fibromyalgia Support Group
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Good day to all.
So let me explain why we're discussing this today.
The problem is, if your system gets too many (as in produces too many) it's a non-Hodgkin's Lymphoma (NHL) called Waldenstrom's Macroglobulinemia, and my husband was diagnosed in early 2018.
Every monocloncal antibody or protein in your blood is essentially a blank, a slug, as they call coins that have been minted but not imprinted.
Now, yoru body is the vending machine.
How well does that work when you feed it full of slugs?
Precisely. Most of the time, the vending machine will be unhappy.
A polyclonal protein/antibody is one that has its value set and its "job" imprinted ----- it is now specialized, let's say to be a US quarter, since that's a good analogy here.
The polyclonal coin will have nice ridged edges. The monoclonal slug won't.
Monoclonals will clog kidneys, potentially heart and lungs, and brain, but usually kidneys. An excess your body can't flush. It gets stuck. Like a slug in a vending machine. See? Input, no happy return.
Source: Cellular & Molecular Immunology 8th edition, 2015. Metaphor: Entirely my own.
Hubby's bloodwork looks great except for two vital factors. One is hemoglobin. The other is his M-protein spike. (M as in monoclonal.) We want the first high and the second low. If the second is high, he needs to decide to get chemo or not.
We're therre right now. He's half a point shy of the "You MUST" get chemo mark on M-spike, as we call it.
So we should, but with Covid... Shuld we?
The hospital that does it is safe (ish) but still....
And it will lay him out for six weeks.
The doc is going to retest his blood weekly and we're gonna hope this is a one-off.
I really hate weird diseases that even the manuals only have one page about.
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On which note, no more skinks yet. Thank God.
Found a good photo of the ones I deal with. They're great insect control. Which, since I have skinks, tells me my monthly pest control sucks. *sigh*
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62F and raining and more rain.It is a miserable day outside and that means working inside. I'm not sure yet what I'm going to inside but there is always something and of course there are my issues with OCD and ADHD. Those combined are actually at times paralysing on what to do. Right now I'm watching this dude on TV that once a week he does a complete yard clean-up for someone completely free....
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This week took forever, or is it me?Meanwhile, in the world's weirdest:Einstein was right. People keep trying, but he keeps being right. Not always, but it's eerie how we use elaborate set-ups costing tens of millions of dollars and do an experiment and boom, Albert wins again. You can detect "ripples" in space-time, or whatever it is. But a new theory would possibly blow Albert's mind: Space is...
Still waiting to hear from some Dr one of the 3 involved, Neurologist, PCP or surgeon on whats going on if im getting the epidural or not or what. Last night i slept from 10 to 12 and then from 530 to 630 thats it. ugh......... i m so tired but pain will not let me sleep.................... so this is short today my head is foggy from lack of sleep. hugs and prayers to all that we have good days! and low pain!
Angela, I sure hope you get some answers today. This is getting down right ridiculous if it wasn’t so sad. How can one live with such pain? I’m so sorry.
I slept all night for the first time in months. I think my body just wears out after so long and I just collapse. I missed my Vicodin for my hand, but that was okay. My hand really hurts this morning as usual, but I’m getting used to it.
Take care.
I’m feeling so overwhelmed. Noah is still sick and he gets so stressed in the car that I worry about making it worse. He keeps getting a little better and then worse again, but not severely ill. Koshka is eating but still not much and not thrilled about the potassium in her food. Got some junk food and treats to try to mix it with as a plan B, plan C is butter or cream cheese. But I need to get it into her in a less stressful way and that stresses *me* out. Then there’s the appointments tomorrow morning. I read yesterday that Covid can cause acute kidney injury and subsequently hyperkalemia, which makes people more likely to have severe illness. There’s no data on non hospitalized patients , probably since they don’t usually check a full panel. I’m not sure if that leads to chronic issues either, or if my kidneys are involved at all, but that’s the most common cause of high potassium. The vaccine doesn’t cause it. But I need my kidneys and I’m sick of my body doing weird stuff. And of course I have raging pms and still bad stomach cramps and general pain, and I feel like I’ll never pay my bills down because things keep coming up…It’s like it never freaking ends.
I'm up and have been sick from the heat off and on since yesterday. The weather is supposed to be much worse today with severe storms this afternoon. I am heading out to see Mom shortly so I can get there and back before anything happens. And, I need to do a couple of errands while I am out.
We did get rain last night which was great because I wasn't up to watering. I spent another day on the phone off and on. I have to get copies of the MRIs on my feet because I am getting a second opinion next month. I just want a second set of eyes to take a look. I'm also not convinced that the bone bruise on my lower right leg is completely healed based on pain in that area. I have something else going on which needs to be sorted out.
AngelaJo - Another day has gone by and no one has returned your calls??!! I'd be going to ER. I know you don't want to do that but maybe that would get someone's attention and you would get some help. I'm so sorry.
Ida - I'm glad that you finally slept. You need restorative sleep badly. I hope that you can get that hand pain under some semblance of control today. Hang in there.
Miki - I am sorry that Noah and Koshka are still not feeling good or being cooperative. Cats and medication are always a puzzle. They are terrible patients. I'm very concerned about your ongoing health issues. And, I hear you on the bill issues. I'm now living on less than a shoestring and must carefully check and double check each and every dime comes in or goes out. Take it one hour at a time if you must. Hugs!
Time to brush Smurf and round up the trash. I want to move the cans up the driveway to the front of the house before I leave. I love to just dump them at the curb but the city won't allow that until later in the day. Less ground to cover when I get back to put them at the curb especially if it is raining. Shoutout to Twin, Autumn, Milily, Zombie. Wonder and Blue.
Angela, praying you hear something today and manage to get a few naps. I'm so sorry!
ida, I hate that your hand hurts so much still. I'm praying it recovers well.
miki, I agree it never ends, I'm financially a nightmare right now. I hope things turn around for you, it sounds like a lot of stress and I can see why you are overwhelmed. Hugs
Fantod, Thanks for always giving me a shoutout. I'm sorry you don't feel well. The weather can make me feel terrible especially when I get migraines from them. I'm glad you mentioned your MRI because I was supposed to call back and schedule a CT scan of my liver. I hope you get a break today and can rest when you get home, I hate leaving the house and it sounds like you have a lot to do when you are out seeing your mom.
I got my girls dropped off at school and my darn Jeep has the check engine light on. I sure miss not having my dad around. O'Reilly shows a fuel injector opened. I called some repair shops and I can drop it off tomorrow and he doesn't think it will long, but you never know, this guy is great and always booked. I'm so nervous with my girls back in school. I hated at home learning all year last school year, but honestly my anxiety was better because I wasn't worrying about them brining a deadly virus home. I try not to live in fear, but I truly am. Back to work I go.
Have a great day!
I am responding to this six years later because I have just
been diagnosed with Waldenstroms, in March. Yours is a great explanation
of what happens to your body when you have this disease.
I have heard many wordy intellectual explanations from others, but yours
is succinct, yet thorough,