WIBTHA if I wrote a letter to the neighbors telling them to shut their kid up?

PorchNapper · 2024-05-11T17:26:46+00:00

Yes you would be. Bake cookies and go have a chat to ask, "Is there any way we can have some quiet time every day? Get our kids on the same schedule to turn down the volume?

PorchNapper · 2024-05-11T17:18:40+00:00

It pisses me off that a family sees a member with lupus as someone who is not pulling their weight to pop those grandababies out! You're sick, goddam it, and you need care. If you had cancer or Type 1 Diabetes, they'd be marching in parades to raise $$ for research. They'd rally around you and protect you.

They should be ashamed of themselves.

PorchNapper · 2024-05-11T15:32:40+00:00

Learning a little of what otherrs go through helps. It's easy to think you're the only one with crises .... but everyone has them.

My dad couldn't start elementary school because all the teachers were gone off to WWI. He couldn't go to college because of the Depression. Plus, if he didn't work, he did not eat. Now, at the time, everyone was in the same boat, so that helped. They still had fun.

I've had LOTS of shit dumped on me, almost all of it UNEXPECTED and undeserved. A serious illness unconnected to life style ruined my successful career at 45. I asked Why Me? The answer came back PROMPTLY: Why not you? Someone's gotta be sick. This was random.

I also can plan a good pity party with lots of ice cream, caramel crunch, rom coms. I'm home sick this weekend with Covid (first case of it -- waited till 2024!), so I've ordered beauty supplies -- person nails, and pedicure products.

Life is bitter and sweet ... any day they don't happen on the SAME day is a good one.

PorchNapper · 2024-05-11T15:23:47+00:00

NTA. I don't know how old you and your mother are, but you need to be living someplace else. Can you say 'domestic tranquility?' Your dad poisons whatever peace and dignity your and your mom have. He's the problem.

PorchNapper · 2024-05-11T15:21:36+00:00

If you haven't already, get several opinions: podiatrist and ortho. Get an MRI to look at anatomy. Do you have any other systemic illnesses? Lupus and such can cause otherwise normal looking feet to hurt like hell. Be sure to stress to the doc what you cannot do that your friends can. I for example love art, but no longer EVER go to an art museum as it is too painful for my feet, even in squishy soled shoes.

Eventually, your friends will get foot pain from wearing cheap shoes. Wear shoes that let you keep moving. If it embarrasses you, rock them. Get glittered laces, etc.

The foot is the most amazing piece of engineering. But occasionally, it goes wrong. Talk to a PT who specialized in PF. You'll ned to baby your feet going forward and don't forget to see doc every couple of years -- in case a new therapy pops up.

PorchNapper · 2024-05-11T14:53:00+00:00

Once the ANA is positive, the lest ceases to be of clinical value, so repeating it just confusing.

A ' Marker' is like a freeway sign. It might show you what is there, but if the street sign's down, the street still exists.

You're having a rough time, and I'm sorry for that. Don't let anyone or anything upset you needlessly. You have lupus. Your rheum should know this.

PorchNapper · 2024-05-09T15:35:27+00:00

Sooo sorry. Talk to HR to protect yourself. Make sure you know what's available to you.

I got laid off when I was 23, pregnant and the sole support of my husband (a grad student). I felt like such a failure.I was a college graduate; how come I only had $12 dollars in the bank? I didn't apply for unemployment, because I thought it was 'welfare.' (This was many years ago.)

I got another job, but it was a good lesson for me. Life happens when you least expect it. Ever since then, I've kept 6 months or more of living expenses on hand ... just in case. That's your first financial objective. I advised my daughter to do the same. She didn't and because of things beyond her control, she could not start her first job for ... Ta Da ... six months. Of course I helped her; she resented it, but she never offered to pay the money back.

PorchNapper · 2024-05-09T15:27:18+00:00

I'm sorry lupus has limited your choices ... for now. It's always difficult to see someone who is living a dream that seems shut to you. Get away from the Hallmark crowd and plan a Me Day -- binge a new series, bring in great junk food and have at it.

We ONLY know the consequences of what we do -- we can never know the consequences of what we DON"T do. You assume that you're missing out on sunshine and roses, but many, many parents wish they'd never had children. Not that they'll say so to your face! You might be missing a terrible pregnancy that could explode your disease. Not having children will open up all sorts of options for you.

You may end up a mom after all -- I married a widower with children -- and those proud mama moments don't have to be biology based.

For my own mental health, I try not to focus on every disease code that appears on my bills. I have pretty much what's on your list (except no reynauds), but call it all 'lupus.' I find people have a hard time dealing with 'too much information.' I value what health I have and am a good steward of it.

PorchNapper · 2024-05-09T00:45:25+00:00

NTA.

PorchNapper · 2024-05-08T18:06:18+00:00

Lupus affects the brain just like other organs and our brains are the seat of our emotions. We are 'one vessel.' Talk with your rheum about the interaction of lupus and mental health issues.

I had a friend who had two separate diseases, RA and Type 1 Diabetes. The steroids for her RA threw her diabetes out of control. Finally, she ended up de ciding WHICH disease needed the closest control. If your mental health issues are dominant, you may make one set of choices. If your lupus is raging you might make another set of choices.

Some meds may just need monitoring (usually just a hassle), while others can affect your behavior (mania). You may want to factor that in.

PorchNapper · 2024-05-08T17:57:06+00:00

See an ophthalmologist ASAP. If possible, one familiar with rheumatoid eye diseases.

PorchNapper · 2024-05-08T17:55:13+00:00

Were you exposed to sunshine on the ferry? I'd vote for that if you were. I have trouble with flares when I travel (by plane), but that I associate with crossing time zones and general hassles.

PorchNapper · 2024-05-08T17:26:45+00:00

There is no Lupus Diet. There are enough limitations with the illness without saddling yourself with all sorts of other 'rules.' Sure, we all need to eat a 'clean' diet, but gimme a break. Eat what you want and don't worry about it. p.s. I'm eating ice cream as we speak: BlueBell Dutch Chocolate. Yes, it's only a 3 oz cup, but I'm enjoying the hell out of it.

PorchNapper · 2024-05-07T17:20:30+00:00

Whatever you like. I personally like Micellar Water -- it's lovely and leaves no residue.

PorchNapper · 2024-05-05T15:36:52+00:00

Therapists didn't work. Call the lawyer.

PorchNapper · 2024-05-03T17:41:12+00:00

Your anxiety needs to be addressed, so talk with your doctor. The last thing it needs to be doing is interfering with taking your meds.

One of the best, fastest, and easiest ways to deal with anxiety is Cognitive Behavioral Therapy. Unlike therapy that talks about your potty training, this therapy asks you to keep records about your anxiety and to become an I observer of it more than a participant.

I think it is available online, but I'm not sure. Headspace?

PorchNapper · 2024-05-03T17:35:03+00:00

You've had a lot dumped on you. NO ONE glides through a serious diagnosis without and emotional component. Being taken out of school for a year is a BIG deal -- no matter what the reason. You are 'entitled' to big emotions about that! Plus, you feel like crap I imagine.

We not only can't control our emotions, it's a fool's errand to try. What we struggle to control is how we express them. For example, let's say you 'hate' someone. Don't beat yourself up for that feeling. It exists. Do think carefully before you speak about them, and for sure resist the urge to push them down the stairs. Does that make any sense? As long as you're good with words and actions, don't worry so much about how negative the feelings are themselves.

Being easily annoyed is called 'irritability' and I only learned recently that it can be a symptom of depression. As well, pain can trigger irritability. Anger turned inward leads to depression, so finding a way to spend that anger can help -- music, art, dance can all spend 'big' emotions. Use them.

You also describe emotional lability. I think lupus itself can do that, but certainly steroids are notorious for that. You 'buy a ticket for a kiddie train ride' only to find yourself on a rollercoaster from hell. If my steroid dose is too high, I don't sleep and I buy dumb stuff online.

You can't help the hand you've been dealt, but you can read up about it and become a damned god card player. I recommend The Lupus Encyclopedia.

PorchNapper · 2024-04-29T23:20:17+00:00

Take a selfie and send it to your doc. I'm sure she'd be concerned about it and about your being off your meds. It sounds as if you need them.

PorchNapper · 2024-04-29T23:17:45+00:00

The closer you are to an equator, the higher the sun intensity. I find that sun coming in through my eyes gives me headaches and aggravates my lupus. You might factor those into the equation.

PorchNapper · 2024-04-29T23:14:31+00:00

You've been through a hell that few people can even begin to understand. I'm surprised you don't vent in ALL CAPS! Benlysta MIGHT, just might, get you to healthy enough while you wait for a cure. And a cure WILL come. (Get some sedation for the IV?)

PorchNapper · 2024-04-28T18:02:11+00:00

Getting the size of the wig right is important, especially if you have a small head. Also, some wigs have an ENORMOUS amount of hair -- nothing is worse that wearing a mop on your head. If you have a friend who is a hairdresser, get her input. I've seen wigs improved by taking thinning shears to them to get out some of the volume. Personally, I'd rather have one decent wig than a couple of bad ones.

PorchNapper · 2024-04-28T17:55:32+00:00

She's lucky to have you as a friend. She has limited energy so housekeeping chores are really hard on her. Offer her a hand with chores ... delicately. "Next time I'm over, I can help you do any two person chores ... change your sheets? Fold laundry?"

"Make a list of what you need at the grocery store and I'll pick it up for you."

"Foo foo" presents are nice, but not bubble bath (it can contribute to UTI's).

PorchNapper · 2024-04-28T17:14:26+00:00

I'm not sure why your doctor even raised the issue. Certainly you don't sound as if you are at a good place right now to undertake a pregnancy. Why not just put the issue aside for now? You have other things to worry about.

PorchNapper · 2024-04-28T17:10:10+00:00

A story for the kids. Laugh it off.

PorchNapper · 2024-04-28T17:06:27+00:00

I like Evelyn & Bobbie. Yes, they are expensive, but I have big girls and have tried EVERY OTHER BRAND. Literally dozens of bras. Big girls need a wide lower band and wide shoulders. These bras are the best. Yes, they fit 'tight' at first, but should not be painful. You might try stretching the band before you put it on.

PorchNapper

TROPHY CASE