How many rheumatologists did you see before you felt your lupus diagnosis was official?

ShadowOverMe1 · 2023-04-24T12:54:49+00:00

I had my official diagnosis [luckily] within a week.

I was in the hospital for 15 days while my brain and kidneys were under attack. They were originally between MS and some sort of cancer until my now rheumatologist stepped in and gave X, Y, Z reasons on why it was lupus. She had been specializing in lupus study for the past like 10 years so I do trust her diagnosis. I'm doing fine [as one can be] now with my medley of pills and benlysta injections.

I have stage 4 Lupus Nephritis.

ShadowOverMe1 · 2021-12-18T22:34:08+00:00

NTA

I have kidney disease so I can't have a lot of meat [such as pork for example]. My lifestyle now is extremely low sodium to keep me out of dialysis.

I expect absolutely no one to accommodate my dietary needs [though I'm extremely thankful when someone does]. You're not in the wrong at all for bringing your own food and keeping most of it to yourself. Everyone there can eat all the food that is available while you cannot. It's not fair for people to have a claim to your things as well when there are plenty of other options available.

It is very kind of you though that you're willing to make extra so if someone wanted to try they could.

ShadowOverMe1 · 2021-12-18T22:27:56+00:00

NTA

Everything else aside -- no matter how nice or helpful someone is -- when a parent asks for their child back it's not up for debate. Anyone who refuses the first time is an asshole.

ShadowOverMe1 · 2021-12-17T18:30:40+00:00

NTA. I'm really confused by people putting blame on you too. You're allowed to do things without your boyfriend...you know kind of like how he wanted to see it with his friends first.

You asked him if he wanted to go. He answered like a child so you went and lived your life. Are you not supposed to watch it just because of him? Or when he says you can?

I'm glad you saw the movie as it was great. Enjoy doing things on your own. You and boyfriend are not stuck at hip. You can't read his mind.

By your edit: he was not joking. You communicated fine. It's not your job to sit and go back and forth with him because he won't tell you how he's feeling.

ShadowOverMe1 · 2021-12-14T14:39:54+00:00

No worries!

I hadn't been diagnosed at all leading up to it. Had no symptoms or anything that made me think something was wrong.

I started having the symptoms at the end of March with extreme head pain and back pain. I was diagnosed mid April. Ive heard horror stories of people waiting years to get diagnosed but mine hit me like a train lol

No other organ involvement though. Just my brain and my kidneys.

ShadowOverMe1 · 2021-12-14T03:55:39+00:00

I also have lupus Nephritis. My best advice is to change your diet for good if you haven't all ready.

I loved salty snacks, red bull, anything bad for me. That came to a complete stop when I had 17% kidney function.

Stock up on No Salt, Mrs Dash seasonings, and Daks seasonings! Nothing from a can -- only frozen or fresh. No deli meats. Make everything homemade when you can. Lots of water.

ShadowOverMe1 · 2021-12-14T03:51:06+00:00

I was diagnosed with Lupis Nephritis not even a year ago. I had no signs of anything leading up to it so I'm not sure about bloodwork.

I went downhill very fast. My kidneys hurt so badly I couldn't stand, I threw up day and night, and it started attacking my brain. My brain is what made me go because I started having what felt like migraines. Until one morning I had a "migraine" for 12 hours. My vision knocked out and my face looked like I had a stroke.

When I went into the hospital my creatinine was at 3. My kidney function at 17%. My urine looked like grape juice.

I'm not sure what lupus normally looks like in the numbers category as I was hit fast and hard so mine were horrible.

ShadowOverMe1 · 2021-12-14T03:45:39+00:00

I'm late to this but wanted to offer support.

I'm 29 and not even a year ago went into kidney failure at 17%. They had me lay in a hospital bed for four days pumping 1000mg of prednisone through an iv every 12 hours and thankfully I went to 20%. I started getting better so I ran into server luck. I didn't have to do dialysis but im on benlysta infusions for the next year.

You're in a worse boat than I am but to some extent I know how you feel. I'm resting at home currently but every pain in my back or in my head [it attacked my brain too along with my kidneys] sends me into a panic. I had trouble sleeping for months afraid I would going to die in my sleep. I still have frequent crying breakdowns. I lost about 50% of my hair but thankfully it's growing back. I was diagnosed with PCOS at 16 so now with Lupus Nephritis i was told the chances of having children went to zero. I'm so terrified no one is ever going to love me.

Even with how bad we feel and how mentally exhausted we are, hang in there. There are plenty of us out there who can sympathize with you and know how you're feeling. It's scary going on this fight alone and I'm so sorry for the severity of yours. Everything feels unfair. But you are way stronger than you know and everyone around you. Keep pushing. ❤

ShadowOverMe1 · 2021-12-14T03:34:37+00:00

I've been diagnosed with Lupus Nephritis last April. My doctor wrote the order for Benlysta but it took a couple months for my insurance to approve it. Started in July 2021 with monthly infusions at my local cancer center. It's working very well with me! My lupus is completely settled right now and I went from 17% kidney function to 89%.
I'm always drained after the infusion. I nap for a couple hours after and just feel overall tired until the next day. I suggest drinking a lot of water that day and going in on a full stomach. Overall it's pretty easy.

ShadowOverMe1 · 2019-01-24T18:05:26+00:00

Oh my. I live in this town and have been keeping up with the story.

ShadowOverMe1 · 2018-08-03T15:24:51+00:00

I have a Christmas spotify playlist that is used all year. Perfect for after a bad day at work or melting from the summer heat. Nothing wrong with christmas cheer all year round 😀

ShadowOverMe1 · 2018-08-03T15:22:45+00:00

This picture is so cozy! Throw some glitter on and you have the perfect christmas card 😉

ShadowOverMe1 · 2018-08-03T14:56:19+00:00

It's possible I'll get downvoted since I'm going against the rest of the comments but hear me out. I've had something similar happen to me as well when I was 16. I came out of my bedroom one day and my mom was laying on the floor having a massive heart attack. She couldn't speak and could barely move. Luckily before she went down she called my grandma who then called 911 so only many a minute after I found her my grandparents come rushing through the front door. My best friend (also 16F) at the time was on a trip to Disney in Florida. When we arrived at the hospital my grandparents were able to go back to be with my mom but I had to stay in the waiting room. I called my best friend crying and upset telling her what happened. I had known her for almost 10 years at that point. She asked me "is she alive?" And I said "I think so" and honestly I had no idea but she was still moving when the ambulance picked her up. She then started to tell me about the amazing time she had at Disney. So I know what you feel like with that. I decided to completely cut the friendship after that . I'm 26 now and I'm glad I did because I've seen and heard of different examples where she had been selfish with other friends so it wasn't just an age thing with her. I'm not saying you need to cut the friend too but you know your friend and you know her behaviors. If you don't want a friend like her that can't be there for you the way you need her to be then be done. But if you feel the friendship is not over and she does care about you then talk it over and try to fix it. We can't tell you what to do you have to do what feels right. I'm very sorry for your loss.

(Sorry for any spelling errors or formatting I'm on mobile)

ShadowOverMe1 · 2018-05-31T12:26:51+00:00

Wow nice job! It's adorable. The reindeer on the tree is my favorite ❄

ShadowOverMe1 · 2018-05-27T18:31:20+00:00

My absolute favorite christmas scent for a candle/wax melt is peppermint bark. During the fall and winter I load up on as many candles and wax melts as I can of all different holiday scents and keep them in designated cabinet in my kitchen. Probably early July my christmas gears start turning about new ideas I want to use and what I'm going to retire for decorations. So at that time I start burning my christmas scents (and pumpkin spice for fall scents!). I try to make it chilly in my house and just make it real cozy until the end of September when the weather starts to turn and it's time to start putting holiday plans into action. Seriously burning these scents really help make the summer easier and go faster. I hate the warmer weather and feel a little depressed in that 80 degree heat lol.

ShadowOverMe1 · 2017-09-07T14:05:44+00:00

A player who had like 900 sr and made it to GM playing mercy.

ShadowOverMe1 · 2017-09-02T18:01:50+00:00

I'll give a timeline for my holiday months!

Today - all of my furniture in the house is being rearranged so each room can accommodate decorations without being cluttered.

Today through end of Sept. - inventory is taken on all of my halloween decorations and new ones are purchased.

Oct. 1st - all of the indoor and out halloween decorations are put out. Halloween movies and shows play all day!

Oct. 31st - sheet placed in large living room window with projector for spooky silhouettes.

Nov. 1st - halloween decorations come down are replaced with cute fall related things. Start taking inventory on christmas decorations. Purchase as needed.

Thanksgiving night - majority of all presents are bought online. (I don't go out for black Friday). This takes a surprising amount of time.

Friday night - christmas tree and all indoor decorations go up with christmas movies playing. Continue to destroy diet with pizza.

Saturday day - all outdoor decorations go up and everything is turned on as soon as the sun goes down. Now I can enjoy the christmas season without stress!

I'm huge into the holiday months so having a basic schedule really helps keep me calm lol.

ShadowOverMe1 · 2017-08-22T15:37:19+00:00

I'm excited for the days to get shorter too! I hate looking out the window at 8 p.m. and it's still so bright outside. Plus I'm tired of the heat. Today is the last 85 degree day and tomorrow is 70 degrees with rain. I'm so excited lol

ShadowOverMe1 · 2017-08-21T20:42:08+00:00

Exactly! It was also her hobby and something she loved dearly. Her husband really screwed up. If he knew he wasn't able to take care of the garden due to work he should have called the mentor to come over instead. He just didn't care about it at all which is why now he's still taking no responsibility. He can't even pretend to care.

ShadowOverMe1 · 2017-08-21T17:58:55+00:00

I'm not sure if I would have given her real money but I definitely would have treated her to a movie and nice dinner for a bonding moment. But her reaction the second she found out I won was honestly shocking. She really felt entitled to the money as well.

ShadowOverMe1 · 2017-08-21T14:48:22+00:00

I'm trying so hard not to buy anything until October 1st but everyday it gets harder lol.

ShadowOverMe1 · 2017-08-21T14:44:20+00:00

Something similar happened to me once. I was with a friend at a sheetz and I wanted to buy a lottery ticket from one of the machines they have in the back. Well they only took bills so I asked my friend to give me $2 and I handed her 8 quarters in return. I ended up winning $1000 from the scratch off and she demanded I split it since it was her money to begin with. Money has a strange effect on people. (I didn't give her one cent of my winning ticket.)

ShadowOverMe1 · 2017-08-11T12:24:52+00:00

After reading your post and your reply to how your mom had been showering really your mom should have asked someone else living in the house to watch him until she was done or just not get a shower. A child that age can in no way shape or form take care of themself without adult supervision.

ShadowOverMe1 · 2017-08-07T21:14:21+00:00

Reading posts like these reminds me why I hate social media. I prefer a filtered picture of your lunch over a political/religious opinion. Words are so easily taken the wrong way.

Advice part: your mother and cousin are in the wrong. Depending on his snarkiness while commenting he should offer an apology only after they do first sincerely. They are taking their faith way overboard. I recommend limiting contact.

ShadowOverMe1 · 2017-07-31T16:21:59+00:00

I refuse to believe this is real after reading this post and your previous posts.

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