ZenusWarriorPrincess's Journal, 02 October 2023

@Leah... I've taken antidepressants in the past that caused nightmares...ugh. Have you discussed it with your dr? 

I doubt it would do much good to discuss it with my doctor. Not to be dismissive but when I try to discuss depression with him he pretty much told me that depression is part of MS showed me that the internet says that the depression goes hand in hand with Ms so it shouldn't be even considered as part of a diagnosis or concern because it just is... I expect to talk about nightmares will be the same as it's part of the side effects on multiple my medications. And the medications work well and do what they're supposed to and as for my immune suppressant we had to get special permission from an advocacy group to even get it because they medical card turned me down and turn down my appeal. Apparently I'm too far progressed in my MS to get the medication I need from the government at this stage. They need for you to start medications at the beginning stages for 2 years before they allow you to go on the vacation I'm on but my doctor says that I'm too far progressed and I would lose a lot of cognitive and physical abilities within the two years of trying medicines that he knows would not work. My doctor has been practicing as an MS professional for over 25 years and is weird that the medications that are out for the early stages of Ms would be ineffective at this point of my progression. But the way that Medicaid works you have to start at a certain point regardless of the progression of your disease. Luckily he has good connections and was able to write an advocacy group which allowed me to have one year free medication he said that after that year of it proving to work and being effective that we should be able to negotiate with the Medicaid company and get it accepted for next year for them to pay for my medicine. But it was very scary for a while there because I didn't believe I was going to be able to get any sort of medical assistance because my disease progression was too far along. 

Leah, thats a very scary story. Prayers for you that things go smoothly from here on out. It’s wonderful that you are exercising tho as that can help with depression i think. Is that true? 

I really like my doctors but I don't really know what to do beyond what I'm doing with them I want to see the rheumatologist the other day and got my test results back. I don't have rheumatoid arthritis which is wonderful but now I'm wondering why I'm in constant pain at night. My joints and muscles hurt constantly I'm not allowed to take any kind of painkillers or ibuprofen because of my medication that prevents seizures and migraines. A lot of my symptoms are getting worse but I'm not technically having a flare up to my knowledge. I know there's something else going on but I don't know how to tell them anything more than I've told them and they're very busy people and they really just don't have time for me to just tell them there's something wrong without having any kind of definitive thing to say. But I can feel the things are getting worse I just don't know how to make them better. So it's frustrating but I just try to take it day by day. I'm not going to lie though and since I've been treated and diagnosed in March I kind of feel like everything's gotten much much worse not better but I don't want to seem ungrateful I just kind of expected things to get better not worse the time. 

You know it. No kids and no hubby for me. I could not walk a year ago. my wake-up call big time. no one came to help me. not neighbors, no one. We can only help ourselves, just in case. I'm fighting to lose the pounds and get strong! we got this 

Leigh my neurologist highly recommends ketosis for MS. if your not famaliar with that treatment look it up. it's well known for MS. WHAT do you have to lose. go carnivore for a few weeks and see if the pain goes away. better than being a slave to docs and big pharma IF it works for you. it's not ez BUT ya never know.  

Jenjabba, I'll have to check if there is a way to do it w/o going carnivore. I'm not against carnivore I just don't digest meat fast enough and anytime I eat too much meat because it "fills" my stomach and doesn't pass through my digestive tract quick enough I lose massive amounts of weight. Which initially sounds like a good thing, but I only weigh 120 lb and that could get me into some trouble. I have two factors that work against my digestion of meat, one of which is I grew up mostly vegetarian and seem to lack the digestive enzymes to digest red meat even though I enjoy it (think gas, cramps, bloat) the other is after three pregnancies that were very difficult I seem to develop some sort of stomach issue that causes me to have trouble digesting some more difficult foods my doctors are trying to figure it out it starts with an a name I'll look it up later apparently beans are also something that are more difficult for me to just more likely before this have never been a problem for me. 

Beans are something else that have started to be had for me too and I never had any issues with eating them before 😕.* 

Leugh, i hear ya. Don't want to hijack this thread. It often heals gut issues. You don't need to answer but have your ever tried it . Often it's the veggies and other things that cause the gut issues. If you have a iliostomy bag and you eat plants, they come out undigested. And meat is always digested. But you do you. I know you're doing your best. Hang in there.  

I don't think you're taking over the thread dear I was aware of your carnivore eater. I read your posts many times ^^ I wasn't an offended or bothered in any way. That being said I've never really been able to eat too much meat it's has always bothered my stomach and after my pregnancies it became much worse. Apparently this kind of problem is not uncommon in people that have been vegetarian most of their lives. When my dad accidentally consumed any kind of bullion or anything with byproducts (where he was a vegetarian for most of his life) it would make him very sick to the point of nausea and vomiting. Otherwise I would be happy to try it most of the dietary research I've seen for Ms in experts suggest eating a more meat based diet I would love to try it I just don't think it would be effective. What I'm really hoping for is a referral to a registered dietitian to get a little bit more answers but unfortunately that's going to take a little while yet. 

But I welcome anyone's ideas and opinions as long as they're just not being out right nasty. I don't think anyone's taking up space it's the internet we all have room to talk that's one of the great things about these forums. It all gives us all space to formulate ideas and share concepts without having to worry as much about judgment. Besides it's not like you were forcing me anything or saying that it was the only option out there you weren't being judgy or rude you were just sharing a thought there's nothing wrong with sharing thoughts. 😊 

♥️ 

https://youtu.be/ZcRnjtHR6CI?si=zdTH6ZNMUIKaZVZy. This is an interview with Dr Terry Wahls, who has Secondary Progressive Multiple Sclerosis. She was confined to a tilt-recline wheelchair with chronic pain and brain fog at her worst. She researched mitochondrial function in relation to brain health, and changed her diet. It's a long talk, and there is a shorter, much older TED talk here: https://youtu.be/KLjgBLwH3Wc?si=eU6NOMGAhu4QS7F0. The MS Society acknowledges her clinical trials at the University of Iowa demonstrate her protocol is effective in relieving MS symptoms. https://www.nationalmssociety.org/Programs-and-Services/Resources/The-Wahls-Protocol-How-I-Beat-Progressive-MS-Using 

I've watched a couple of the videos that you've recommended of hers before I like them a couple of the problems I had with her suggestions where they were just out of my price range. For example the eating a pint of blueberries a day not only is a delicious idea and sounds fantastic for not only health but for also fun but blueberries right now are nearly $4 a pint and that's way out of my price range. I've been struggling to get my EBT reassert finished jumping through hoops here and there even though I know that we qualify I've been through paperwork snags for the last month they said they'll back date our benefits when everything's fixed but it doesn't help us right now. It's frustrating because I haven't needed EBT until all of this medical issues and then I had to reduce my work and Ryan had to reduce his work in order to qualify for the medical card in order to get the medicine. I hate being the cause for our financial distress.. 

I can't tell you how much it embarrasses me to have to get EBT I work so hard not to have to get EBT ever again after a Ayla was born. The way that you're treated as a person when you used an EBT card is so frustrating and humiliating especially when you consider that I work 40 hours a week and the things that people will say. / sigh 😞 But I do my best not to worry about it I know that I work hard to earn what I'm given and to give back what I can to those that are in worse straits and to give to charity when I'm able. We give our hand-me-downs to those that are in need when they're in good condition. I give thanks when I'm able and I'm very thankful for what I have and that I was born here and that I'm able to have a medical card and food to eat.  

So I did find a website that talked about going into kikidosis while being on a vegetarian or a low meat diet so I'll do a little research on it. We will unfortunately take a little bit of work on my diet cuz I love hummus and apparently chickpeas are on the naughty list. As with peas and carrots but I'll try to look t a few resources to see if I could try to do it at this time. But I've at least found out that it's completely possible so it's something to keep in the back of my head when we're a little bit more put together. 😊 

I attended one of her talks in 2011. She made us repeat "3 cups of color, 3 cups of leafy green, 3 cups of sulfur rich." That's 9 cups of produce a day. It is a lot. I had to Google sulfur rich: broccoli, cauliflower, cabbage, onion, garlic, leeks. She was talking to a carnivore on a podcast and said she has not studied carnivore diets with MS, but "I do know I don't feel right if I miss my leafy greens." The 3 cups of color is where your squash, root veg, berries, and melons are. She advises avoiding dairy, grains and legumes, but still eats seeds and nuts. I don't know what is more affordable between carnivore and 9 cups of veg a day. Probably carnivore. 

Well my personal taste preferences are more on the veggie side for sure. But I appreciate both of you for the information. Which is more than the doctors were wearing to take the time to give me. When I watch the videos they implied that the dairy was more of an issue for the individuals that had sensitivities although you had to do an elimination diet to know if you had the sensitivities which sounds like a whole bunch of fun sarcasm implied although I have heard there may be a blood test that you can take not sure if that's true or not. Also not sure if insurance would cover it if it is true that there's a blood test. I know the website I was looking at that talked about the kikidosis using a vegetarian model said that dairy and eggs were useful so if I wasn't sensitive to dairy that would be helpful for that particular dietary model but once again that would require me to go and research that elimination diet first. I suppose the first place to start would be trying to get a referral to The dietitian. I'll try to work on calling my healthcare provider sometime soon. 

@Jen... never worry about high jacking any of my posts! I love to see people try to help others! 🫠 Thank you & Lady for caring enough to share your research! ❤️ 😘 Best of luck to you, Leah, in all regards! 💜