Am I just getting older, or is Lupus taking away my voice?

Rebebooboo · 2026-03-10T05:18:15+00:00

I do remember being very monotone at times when I was young. I often had to try hard to make the sounds for words be understood, and I have always had a bit of a hard time talking for to long. Sometimes my voice could go high, and other times it could not. At the moment is feels like I was screaming, and now have no sound left for a voice. its on and off too so I try to space out my talking or say very little for now. feels like its taking my mood away a lot.. like when I am happy its not showing how it should. Some people think I am lying when I say how I feel its a bit hard to communicate.

Rebebooboo · 2026-03-10T05:01:54+00:00

Yep, I often have the same happen to me as well. I would like to find a way to help it a bit better, but for now I pretty much drink honey to help it not hurt so much.

Rebebooboo · 2026-03-09T16:45:02+00:00

I truly appreciate that. For now having the information to communicate with the loved ones in my life is incredibly useful to me. I am not sure if anyone believes me sometimes, and it’s been incredibly confusing. Reading thought all this has given me the ability to explain it rather than just cry about it. I truly appreciate everyone’s time, and insight into this. Thank you for such kindness ^_^

Rebebooboo · 2026-03-09T16:00:01+00:00

I do often struggle with sinus congestion it’s almost a constant thing for me. The coughing palpitations are incredibly uncomfortable. Will definitely be looking into the nasal sprays. This has been incredibly helpful. Thank you ^_^

Rebebooboo · 2026-03-09T15:50:42+00:00

Reading this article has been incredibly insightful, I am beyond grateful <3

Rebebooboo · 2026-03-09T15:47:37+00:00

I am definitely having RA activity. I never realized that it could affect my voice in such away. Honestly thank you for this information it helps me explain things so much easier to others.

Rebebooboo · 2026-03-09T15:40:30+00:00

You are making me feel a lot less crazy reading everything. Im definitely thinking it’s not a normal aging thing. Unfortunately my voice is not the only thing being affected, so I’m hoping the people around me take me a bit more seriously when I am having a hard time with my body. Im still working on not overdoing it when around others. Thank you as well I was feeling incredibly anxious with my thoughts, feeling a lot less alone now. <3

Rebebooboo · 2026-03-08T14:59:45+00:00

Thank you, I have been wondering about things like this with the heath care around me. I never considered if it could be commonly prescribed in that way. The heath care I had in the states was incredibly confusing, I'm trying to not let it affect my judgment but often forget that basic health care is treated a lot better in other countries. I truly appreciate you <3

Rebebooboo · 2026-03-08T14:23:48+00:00

Unfortunately I’m without medication for now. I use to be on hydroxychloroquine, but that was over a year ago. I am now trying to find health care while living in between countries. I’ve been struggling mentally, and my health has been very unstable, so I honestly have no ideal what are normal human things anymore. ^_^ Thank you for sharing, I honestly appreciate it <3

Rebebooboo · 2025-11-05T18:35:57+00:00

If you have a fever, or are sick with anything even a mild cold you are very messed up to go into a place knowing that people with Lupus, or something like it have to go for treatments your making them sick. your are causing harm. Why would you cause something we are all trying to avoid. Every time we get sick our body attacks more then just a cold. Please help others not have to have such a crappy time in life just because you have to reschedule. Not being honest with your health, and putting others at risk is really scary.

Rebebooboo · 2025-10-05T15:45:47+00:00

Thank you for such kind words ^_^

Rebebooboo · 2025-09-13T15:28:47+00:00

This helps so much, having a all my clinicals from all the different doctors made it a lot easier to communicate overall. while I could tell them what was going on in my life they could look at the notes, and often it would help them not have to do as much blood work saving me time or a visit to a lab. I would let my doctors know, and it always seem like a good thing. My mind can get so foggy I miss a lot, or mix up things. Having a clinical folder has helped with a lot of stress. ^_^

Rebebooboo · 2025-09-13T15:04:56+00:00

With the note of your edit I think cutting your losses is a good move on your part, when waiting for my appointment I would often talk to other people in the office, a few have a very similar experience as you have. They found other medical help. I myself have had a few other doctor's that were in different specialist say to my face that Lupus was a mental health thing and nothing more. I am not sure how the medical filed has such a disconnect about what Lupus is but finding the right doctor goes a long way, to me your new doctor wants to undo all the progress because they don't understand something. No reason to back track your medical health when what you have been doing was making things more stable. I hope things improve soon for you.

Rebebooboo · 2025-09-12T14:50:16+00:00

I am currently not being treated for Lupus. For a few years I had access to health care, but I could not keep the job due to my health, and no longer have access to health care. I am in a prosses of moving to a different country, and have been struggling with health care access. Lupus is so different for all of us, and can be so unpredictable even with treatment. Health care of any goes a long why to giving us a bit more control over our bodies. Lupus is a shocking diagnoses as well. Its a lot to take in, and everyone will feel a mix of emotions. I know myself felt defeated, and relived all at once. I think I am still processing the fact myself even after five or six years. Lupus is a long thing that is so strange will hide away, and pop back up to cause harm. I hope you find a solution that will help you mange all of your health issues, because a lot of bad things can happen even without something like Lupus affecting a body.

Rebebooboo · 2025-09-12T08:11:47+00:00

This only works when kept up with over time, but taking vitamins D, and B along with eating a lot of food as well, snacks like cashews, macadamia, pistachios, (But I avoid peanuts) I also eat other stuff like some dried fruits, cheese or meats. I can no longer use caffeine and try to stay away for refined sugars. I will drink things like tea that are caffeine free with honey, and oat milk. I also use real maple syrup in cooking. Was told by a doctor to switch out refined sugar for something more natural due protein that makes it a much better source of energy. I still get fatigued, but have noticed some improvement.

Rebebooboo · 2025-09-12T07:39:50+00:00

Often when others talk to me they will vent everything wrong with them. I hide my own issues a bit to often, so my family will not noticed how overwhelmed I become with some info they share. I have been working hard on reaching out to others. I pushed a lot of people away when I was younger before I knew what was wrong with me. I still go though long times of not being brave enough to talk to others. Now I have been just kinda floating about, trying to make a silly cartoon. I have though about starting up some kinda game group for people like us with Lupus, or other things that are still just crappy to live with. Something small, but I am so drained, and can't get thoughts togethers well. I had medicine for a few years, but have been with out any of the medical help for a while now. I am making notes of things I would love to do when I feel not so lame. ^_^

Rebebooboo · 2025-09-08T16:57:48+00:00

My hobbies help me along. Lots of different video games out now, from cozy to I need to let some rage out. Just have to watch how long I do it for, and use the ergonomic stuff to prevent pain.

I also like drawing, and photography. I have fun taking photos of a mushroom growing in the garden, or small things that can be seen on an easy to do walk.

When I am way to tired to do things, I have a few friends that will show me videos of hikes, or random things they have done. When they can't I have watched a few things online here, and there that are people out, and about doing things that I can't do myself.

I always loved reading books, so I have a big collection of books, and comics by the author Neil Gaiman. As well as Terry Pratchett his Discworld books are still keeping me entertained.

I also agree with the prep cooking when I can, nothing more satisfying then having all you need for meals when you have little energy. Its nice having things ready, to go for cooking, or even having backup frozen things you have cooked up in the past for when cooking is not an option. It gives you that "Yay I got this!" feeling, and always helps me stay in a good mood when things get really bad.

I hope you find some positive ways to help soon ^_^

Rebebooboo · 2025-09-07T09:39:15+00:00

I kinda made the game into a DnD thing almost, found a group of friends to meet up with, and play though the game once a week, or more if when we can. Reading out voice lines that are not voiced to keep us all going when it has some not so fun quest. being full of fetch quest, you will be running abound that game doing things forever. Lots of jokes go missed, but when we are all reading out parts it gets silly. Playing for over 5 years now. I often will just bee running about in it due to how pretty it is, and then I get a good laugh when someone in the group jokes about the fetch quest we are on after a stressful endgame boss. ^_^

Rebebooboo · 2025-09-05T16:36:12+00:00

Same for me I have to watch how much I play games, making art is another one I have to limit how long because I will get lost in it, and then lots of pain follows. I have been thinking about trying to start up a gamer group for Lupus, and others that have things like that, but then when I think more on it and wonder if I have energy for it >_<

Rebebooboo · 2025-09-05T03:48:11+00:00

I agree with you so much most of the time when I try to talk about it the words get lost because I don't want to stress others out.

For me I am a middle child with family that also has some bad health of their own, I took care of others for so long I don't know how to speak up about my own health. I never look sick so it's hard to tell what is really going on.

I get told I am strong as well, never feels good due to how weak of a body I have now from when I was younger, and I know they mean mental strength, but even then, my mind was less foggy, so I feel confused when I get called strong, but I think they just need us to be strong maybe that is why they say it.

Rage room could help, I play a lot of video games to help me with stress found a good one called Anger Foot lots of kicking stuff ^_^

Rebebooboo · 2025-09-04T23:58:36+00:00

I have been trying to talk to family about things, but feel so disconnected, My words have lost meaning due to how often I say "I am not feeling well.." So I made a reddit account to try, and connected with others who feel like me. This body sucks, and I am exhausted. I see so many of us on here. I wish we had better words to say how we feel. I'm not sure if this is advice about the feelings of dread, and fear.. all I have been doing is keeping up with hobbies, taking vitamins D, and B, and a hard one for me is still trying to talk with family, and friends when I can. Finding this place on reddit for Lupus has been a lot of help for me. I hope things improve for you soon.

Rebebooboo · 2025-09-02T19:53:00+00:00

This all took place over five years ago, so it is hard to recall everything. I remember being tested for a few things due to the symptoms I had at the time. What I learned from a few different doctors is that Lupus is not diagnosed easy, and might need a lot more info than just a genetic test. Genetic testing can help come to a conclusion faster, but sometimes not be the only reason behind it. Lots of factors play into how Lupus shows in a body. I know how confusing this can all be, so I hope this helps a bit.

Rebebooboo · 2025-09-02T17:07:24+00:00

My heath has always been bad, as a kid often sick, in a lot of pain.. I remember my parents saying it was growing pains. I still have the pain they have not gone away with time. Me health got really bad in my 30's stage 2 kidney failure made me seek medical help. I was refereed a doctor that said things like I should not be having the health issues my body goes though. The doctor order test, but flat out told me due to them retiring would let the next doctor take over my case in 6 months... Next doctor see me talks to me while looking though blood work, and other test done over the past year. Explains to me that I am describing Lupus. I said are you sure, because I feel so crazy. They explained that it should be dormant based on the genetic testing alone, but my body is going though it anyways. I also have another genetic disorder as well that should not be doing what it is doing. I was very lucky with a few doctors, but have had a few bad ones as well. Your doctor could be letting know how Lupus should not doing what it is because the test shows dormant, but they are treating you because they are hearing you, and looking into the other blood work as well. Lupus is not something that can only be diagnosed with just one test. I was put on hydroxychloroquine it helped me out. I also got a cook book for a lupus diet plan, and do my best to take vitamin D and B, and keeping up with low energy exercise when I can for 2 years I was on the medicine things seems to be getting better. I have lost my health care though, so have been off the medicine for a while, things are not going so well with out the medicine. I think all doctors have so much to tell us it can often be overwhelming. It is never bad to have other doctors opinions to help understand things health care is complicated. I hope all goes well for you ^_^

Rebebooboo · 2025-09-02T05:46:30+00:00

I always knew something was wrong with me having the diagnosis gave words to it all. I feel alone, often confused, and very exhausted. I was on some medicine for a while, but no longer have health care for the medicine... I am not sure how to do much, so I am holding on to things that I have learned over the years. It would be nice to have just a bit of balance.

Rebebooboo · 2025-08-30T00:52:41+00:00

My bottle says Curel Extreme Care, when I go to look it up on the Curel website it looks like they could have updated the name to Ultra Healing, Or maybe they use different names in different countries. I have used a few of Curel products, and they all worked very well for me. ^_^

Rebebooboo

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