1. Unfortunately I’m rapidly losing my mobility for starters which obviously isn’t much of a death sentence. However, I’ve got 15k in debt and am no longer to afford going to the doctors, my Benlysta, or any treatment options. I’ve got red flags for large amounts of protein in my urine and I was suppose to go in to see a Urologist for worry about bladder cancer, but that never happened. I was suppose to go see a Nephrologist (I call them Nephys) about the high protein and out of whack protein:creatinine ratio. My pH and specific gravity are off. I use the bathroom sometimes 5 times in an hour. I can go through a roll of TP in a couple days if I’m lucky. My gastric problems are getting out of control and I’ve got two happy ulcers. I’m losing throat motility due to GERD and esophagitis now both being untreated due to not being able to see a GI doctor anymore. They wanted me to come in twice a year to monitor and make sure I don’t get Bartlett’s Esophagus. I’ve been in and out of the ER 3 times for heart problems (arrhythmia, wheezing, shortness of breath, 11 on the pain scale). They can’t tell me what it is completely except my aorta is abnormally small and I’ve got regurgitation into two of my valves. I do have to say getting an ECG was very interesting, but also weird at the same time to watch the different colors on the screen while the heart pumps!

  2. I’m so sorry to hear that you’re going through this, that you’re emotionally feeling this way. May I ask you a few questions? See if I can help at all? •I see that you live in a cold state, you said. What state or region is this? I used to live in CT and my goodness it was awful for my body just terrible. So my family and I moved to NC and stayed there only for 5yrs because the weather was WORSE for my body than back home up North! Way too humid, way too many migraines, etc. So, last year we were blessed to be able to move out west. I live in the California Desert and I feel soooo much better out here. Have you considered (or have any Drs even suggested) moving from that area for your health & wellbeing? Even Arizona where they have excellent naturopathic medicine along with the Mayo Clinic there. I know that you said money is extremely tight right now, have you thought about a GoFundMe? Your family members OR close friends can start & maintain it for you. I just KNOW you could get assistance that way. •Are you currently married to your husband? You said husband but then said that you are planning a wedding. Instead of health insurance through work (I’m guessing you’re on your spouse’s?) have you considered Obamacare? You can stay on his and then get Obamacare on your own to cover what your husband’s will not. I haven’t heard about Obamacare plans rejecting ALL autoimmune disease treatments…or copays for Drs. That’s crazy! I’ve been on it since NC and I never had them reject everything. Sometimes, have to read the “fine print” of the hospital or medical practices you receive care though. I had to switch plans a few times because my Drs no longer took United Healthcare but only accepted BCBS. OR one year the pharmacy coverage was amazing but the coverage for procedures and whatnot was awful (United healthcare). If you are on Obamacare, what about Medicaid? I know I have read about couples actually divorcing so that one of them could get on state assisted health insurance so all of their medical bills are paid for. It isn’t great BUT they know they’re married, secure with their relationship and it’s for health. It’s just a thought. •I don’t know where you live, again, but have you thought about traveling to any of the top hospitals in the country: Cleveland Clinic, Mayo, John Hopkins? •I really feel gofundme is a really good option to help financially.

  3. I would never be able to move. I have NO money. None. What money would I be able to move with? I can’t even pay an $80 doctor co-pay. Not to mention my husband would have to change jobs when he’s trying to grow within his company. Both of our families live in OH with us. Both sets of our parents are quite old and I know mine couldn’t be left alone. I try to clean for them and do what I am capable of. It would break their hearts if I moved.

  4. Before I answer the rest, that’s why I suggested the GoFundMe, to assist with moving and medical expenses, as well as regular everyday living.

  5. 8 inch heels?! Honey you’re better than me! I’m a woman who used to NEVER go a day without wearing heels. Always in them even to the grocery store. But now?? My knees could not ever! They laugh at me…scoff, even. Ask me where I think I’m going in anything not planted firmly on the ground—flat😏

  6. I think we might know each other, you sound like a dear friend I grew up with. It’s been a while and I need to reach out!

  7. Haha if you have a love of J Reznik & I know what you share in common with Elvis then YES. Just message me on FB. It’s been a while!

  8. I felt gross taking mtx. But you should be taking prescription folic acid as it’s a specific dose for you to help with the side effects of that med. I also had to get a methylated version from compound pharmacy because my body didn’t absorb the folate; I actually have to use methyl prednisolone, too due to how my body metabolizes meds—I’m an ultra rapid metabolizer of most medications (there’s a genetic test for this).

  9. Omg… I had to use methylprednisolone too and MTX makes me sick. I am taking a folic acid supplement but that’s of my own accord cause I have thinning hair. I have paradoxical or extreme symptoms from a lot of meds 😕

  10. Ugh I’m sorry to hear that. Maybe you are also an ultra rapid metabolizer—I am. And you can find this out by genetic testing. A lot of people who get a lot of med side effects are either slow metabolizes or too fast. And there’s a folic acid that’s is by prescription, there is also one that you can get at a compound pharmacy as it is methylated so that may work better for you.

  11. Does anyone here find that they also get sick less with lupus? Like actual illnesses so no colds, flu, etc? I don’t even know the last time I’ve been sick at all.

  12. I was taking methyl prednisolone everyday for about two years along with Plaquenil and whatever other med I was on at the time. NOW, I take Plaquenil everyday, Rituxan infusion every 6 months and prednisolone whenever I flare.

  13. I‘m on Rituximab, hydroxychloroquine and methylprednisolone. UV exposure didn‘t really trigger flares yet, but I always got Livedo Reticularis which hurts a lot. I try to avoid direct sun exposure mostly for that reason but especially if UV indices are high. Every body reacts differently, but still the ones diagnosed with lupus should be careful with the sun. All the best for you!

  14. We’re on the same things AND your symptoms sound like mine! With the Livedo, my Dr says to be careful of being too cold, too, that can trigger the Livedo and this can trigger flares.

  15. Always somehow good to know not to be alone! Oh ok, thank you for telling me that, I didn’t know this yet. Did it also happen to you before? I hope not and that you are ok!

  16. You’re welcome :) I’m sorry I don’t understand what you’re asking. What happened before? The livedo? That actually started in the last few years. I’ve had Raynauld’s for years though. Ever since I was a kid so I’m sure that was some type of precursor, honestly.

  17. You can tell your PCP though that you want dye. Remember you are the patient and we all must be advocates for ourselves. Just because that’s their plan, doesn’t mean it’s what YOU want. It’s like a Dr wanting to give you a certain med but you aren’t quite comfortable with it. You don’t have to take it!! Speak up for YOU :)

  18. Thank you sm for this! I always just assumed when it came to labs and tests, I have to follow what was ordered

  19. You’re welcome! And absolutely not! It’s your body :) Autonomy is #1!! For anyone, but especially for those of us with chronic illness—we have so many things going on that can make us feel sometimes hmmm ‘powerless’ or out of control in what’s going on. So, we have to remember that we continue to speak up for ourselves. I have turned down more tests, labs, etc than I can count. I have also asked for several to be done that were not originally ordered OR the Drs forgot we discussed it in office prior. Same goes for procedures! One Dr tried to have me do a pelvic MRI to prove HER point instead of supporting my claims, giving concreteness to my symptoms—so I refused to get it. This was the same Dr who was supposed to be an “expert” in lupus, gives talks all over the place, but refused to believe, diagnose or treat me for lupus because I didn’t fit the criteria of what SHE has seen for lupus. Meanwhile…my nephrologist is telling her to do all of these other tests for lupus because he’s positive that I have it. FFWD about 5yrs later and I’m finally on the right meds with the correct diagnosis, the right Dr, and getting the right labs & tests every 3mos!

  20. Title: Hey, Judy (reference to The Beatles' Hey, Jude)

  21. Perhaps this would work as a limited series? Can I still read?

  22. Wow, you guys are really going that far with my stuff that you're putting it in workstations just to analyze it? Super awesome, I'm glad you guys are putting so much effort into this. I wouldn't trust what you put in there unless I watched you take it straight in the raw form, right into the program, you can easily edit pitch, and bend things before I ever have a chance to look at what you're doing.

  23. You guys are really going that far?? Haha YOU are posting clips of yourself singing asking for “fake help” apparently since you are apparently perfect at “screaming…singing”

  24. Hahahaha, most of it? The recording is literally 15 seconds.

  25. When I have my infusions, Rituxan, my bp drops way below 100. I was very dizzy. I always get a two week headache with mine also. BUT I never get fevers or a rash—I hope you contacted your rheum because that’s a serious reaction and they can happen at any time. Hope you are feeling better

  26. Hmmm you don’t use ANY NSAIDs right? Because that’s a big no no. Also, around the time of my period, I always flare and have a huge spike in protein in my urine. As I dont wish to guess your pronouns and/or offend, I’ll offer info for myself 😊I actually had my follow up with my nephrologist yesterday and she said if my level of protein stays where it is, she’s going to add a med for it but it’ll have to be VERY low as I already maintain a low BP. Can’t have me passing out 😏 perhaps also think about anything in your diet that may have temporarily increased your levels more than usual: we’re not supposed to eat a ton of veggies with potassium & phosphorus, or a lot of Brussel sprouts, not a lot of spinach, low protein, so low amount of nuts, not a ton of dairy either, umm I’m trying to think what else. Obviously limiting sodium and artificial sweeteners which people think is a good alternative but it’s just better to use less of natural sweeteners.

  27. LOVE THIS! Just went to the website and see a travel and bedside one I’ll be ordering (and giving for Christmas!) thanks for sharing

  28. The name is in her description 😊chronically Chic boutique

  29. Can you do work from home at all? Or, have you worked at all yet? I see that you said you are new to the workforce being so young. I’m wondering if short term disability might be a better option for you right now. Especially in the beginning of a diagnosis. If you have the ability to do that, i would do so.

  30. OOOO giiiirl, yes that's my favorite sunscreen, too! It's also entertaining to put on sunscreen when it's cloudy and like 60 degrees. You don't need sunscreen do you? Yes. Yes I do.

  31. Psh! That’s when the UV tends to be the highest! Something called the ‘broken cloud effect’ so it’s best to use sunscreen everyday. I honestly use sunscreen on my face even if I’m staying inside all day—house with tons of large bright windows, take 0 chances!

  32. Wow! Whats this Neutrogena solid sunscreen you speak of???? I will be getting myself some of that. I rarely wear sunscreen because I cannot stand the feel of it on my skin. This stuff might actually be not annoying.

  33. I used to buy their UVA/UVB 70spf Ultra Sheer Face & Body stick. It appears as though there’s another iteration but haha I feel like I e literally bought enough of this stuff in bulk from Amazon to last a couple of years according to their exp dates. It is AMAZING. I carry one in my purse, keep one in the car, one in my parents’ car, gave them a few for personal use lol, and then just a box of them at home! I did a little test using this stick on my right foot & a banana boat waterproof I used to use, felt like I was in a commercial—“Look mom! No tan line!” I think they only make a 50spf version now? But it’s still holy grail.

  34. I am 34 but have been suffering from chronic pain since about 23/24 either from endometriosis (since 2011) & migraines (since age 11) or both of those AND Lupus (diagnosed 2018 but woke up in excruciating pain in summer 2013). I have heard an entire range of bs and nonsense from Drs who haven’t wanted to treat my pain. I literally had an appt with my pain management Dr the other day, had my Mom in there with me—he attempted to say that he no longer wished to treat me as a patient because of the DEA. That is NOT my problem. It is also where questions such as this posts stem from: attempting to make both a political & government issue, the issue for every single person—please know that is not your cross to bear and do not allow providers to put that on you either, have you walking around suffering your entire life because THEY are scared to lose their license, they are concerned about their jobs and money, but they aren’t as concerned about the well-being of their patients?? What will become of our health mentally, physically? This is our lives we’re talking about, right? Not the careers they’re concerned with as many of us don’t have those anymore…

  35. 51. Started 1999 on pain management. Quit all opiods in 2012. Now on Kratom, Poke Berries, Herbs for pain, PEMF, Vibration Plate, Therapeutic Massage, Trigger Point therapy, Orginal Point therapy, and many more.

  36. Is all of that helping you? Do you feel as though you’re able to function well enough in your own body?

  37. Absolutely. The Fall is usually really bad for me & I’ve had a flare going since late July. Sitting on the couch all day today as we speak. I’m over it 😑

  38. Well…to be “technical” (or too technical I suppose?) it is actually an image as it is, a photo on our screens. But, to answer, just at first glance the glass doesn’t look naturally or hmmm organically placed. It kind of appears to be just slightly hovering there, over the paper & not sitting on it. And also with the glass—are the varied colors and lines on it designs ON the glass or do they come from you playing with shadow and light here? I really love the warm coloring though!

  39. As much as Clueless was THE “it” movie of the time…Cher and her brother fell in love…and he was tons older as a college student than a high school student! I don’t care if Josh was her stepbrother—it’s incest and you can’t tell me any different. And…he was OLD.

  40. Absolutely. And let’s add even more inequality for people of color, namely Black Women—from maternal death rate being astronomically higher, to less treatment in pain management for equal medical conditions (under treatment), to the overall lack of empathy of both Black men & women due to still biased medical texts (Black patients have thicker skin than white patients, Black patients have thicker muscle than white patients even in their organs (ie different eGFR numbers)…etc) Change is more than required.

  41. Exercise?! 😆I wish! I used to be a gym rat and stay in there for hours everyday, sometimes twice a day before lupus. Now, Lupus is my gym. Getting out of bed, showering, washing my hair and brushing my teeth are my cardio. Everything else—resistance training. But for real (well haha real-er) Some flares I just have terrible pain, some flares I am sick like with a flu (Tylenol rapid release is great for that) AND have bad pain, sometimes I just feel sick. Most days, I still feel ugh but functional. I’ve been in a flare since late July because every Fall, this happens. Doesn’t matter what meds I’m and how stable I was prior. My says “Nope 😤I’m done” and I just have to go with it for awhile.

  42. Prior to Benlysta or Lupkynis being discovered, there was a time when Rituximab was very popular and being used as alternative for lupus nephritis and it was helpful for many lupus nephritis patients as the options were more limited; even tho Rituximab was never approved by FDA for this condition. Benlysta and Lupkynis were both approved by FDA for lupus nephritis in the past 2 years. They have been both studied rigorously with outcomes solid enough for FDA to grant them approvals. In fact, Benlysta works similarly as Rituximab and is somewhat of a younger and “stronger” cousin. That doesn’t mean there isn’t a role for Rituximab in many conditions beyond lupus nephritis but the evidence for effective treatments have shifted in favor of these new medicines for lupus nephritis specifically. Again, the decision to use the appropriate treatment for your condition is one that rest solely between you and your doc. Hope this helps.

  43. That’s interesting as I’ve never heard of Lupkynis. Thanks. I know my Dr gave various reasons for choosing Rituxan over Benlysta, and honestly, my multicultural background was one of them. He showed me several research studies done about ethnic biases in healthcare (for instance many of the treatment studies are not incredibly diverse, but several of the older medications are getting a broader field of patient studies, much more than newer medications). Sometimes, certain genetic profiles do not work as well with certain medications (I am an ultra rapid metabolizer, for instance, and yep that’s a real genetic test!).

  44. My Rheumatologist uses Labcorp in her office so all the bloodwork they do in there goes through Labcorp except for the DSdna; that has to be sent to Quest. The reason I did Quest earlier in the month is because its close to my house so I just went there since I wasn't in her office when she did the order. I am kicking myself over it now. I jumped through other peoples' posts yesterday and saw some people listing their labs and reference ranges. One person tested positive for either the CCP or RF at Quest with a lower reference range than what my Quest lab work says. Not sure if these are typos or if labs change reference levels randomly. People be trippin...

  45. Actually, your levels CAN change depending upon disease activity, the treatment you’re on, and sometimes it feels like just cause. Trying to get your labs processed through a different lab may be a good idea, still. Even though your Drs office may like having labs at one place, you can still request a different one, all they’re doing is putting it in “the mail”. I hope you get more answers soon!!

  46. Thanks for your response and you make a good point. I wish there was a way to speak with someone who is knowledgeable over the Avise test regarding the sensitivity of the antibodies they test.

  47. You’re very welcome. Have you considered going to Mayo Clinic, Hopkins, Cleveland Clinic? Whichever is closest to you?

  48. I’ve been using cannabis with plaquenil and my Rituxan, as well as steroid if needed. Patches tend to work the best as well as edibles (Wyld gummies seem to be the most consistent in dosing) for my overall discomfort, for better sleep, inflammation, and full body health. I will say that it in no way for me replaces pain medication, but it does decrease the amount I need to use for severe pain on a daily basis (not during flares though)

  49. Ya I did it for years and found it to be a very helpful for pain and depression/anxiety. Sadly, it makes me anxious and groggy for work so I stopped but no pain medicine compares. You shouldn’t have any negative interactions (from a marijuana user on plaquenil who smoked for 4 years).

  50. Have you tried other strains? Or the patches instead of smoking?

  51. Well, I understand what they’re saying, but agree that they don’t understand what you’re going through. No one does. I’ve had chronic pain in my neck since I was a teenager. Now that I’m in my 60s, I have pain everywhere in addition to I still have pain in my neck. My back, shoulders, knees, shins, hips, everything. Personally I suspect a lot of my pain stems from living with the pain in my neck, not sleeping well, lack of mobility, having to sit or lay in certain positions only, etc. but that doesn’t make the pain in my neck easier. And despite the pain I’ve experienced, when my husband threw his back out, he was in agonizing pain, much worse than I had, and there’s no way I would have minimized what he went through. So like I understand what they’re saying, no one knows what you are going thru. That’s just mean.

  52. Right, but some people (like myself) have all of that full body pain even in youth…I have Lupus. So, apart from joint pain, there is muscle pain, tendon pain, any organ involvement (I have lupus nephritis, kidneys) feeling sick all of the time for God knows what or why at various times throughout the day. Sometimes you wake up & you’re like Hey! I can do this!! Then by 2pm, you wished you hadn’t been so eager to “do this” and now you’re ready to sit down for the rest of daylight thennnn get in bed early. Soooo yah

  53. Almost 71,000 Black girls and young women went missing in 2021 in the US alone—not to mention the number of indigenous women... It is of NO surprise the same pattern happened in this case.

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