|
Post by Aish on Aug 28, 2015 18:39:07 GMT -5
There is an existing thread for this somewhere, I can't find it, so here goes version 2.0
I've got the blues because I've been diagnosed with Lupus. I already have Hashimoto's and Raynaud's. FML
|
|
|
Post by LonelyForsaken on Aug 28, 2015 23:29:31 GMT -5
{{{Hugs}}}
|
|
|
Post by Aish on Aug 29, 2015 14:09:55 GMT -5
My rheumatologist said my RA factor is 34 - which is gray range. Too elevated to be normal, but I only have some symptoms. He will be watching it though. He is waiting on a few more test results, and then I go back in for our meeting where he tells me what my management plan is. He is consulting with my cardiologist because I have uncontrolled blood pressure even though I take 2 meds for it and maintain a very restrictive diet (no gluten, dairy, added sodium, caffeine, or processed foods). I'm very short of breath lately. Rheumatologist said since Lupus is a connective tissue disease it can strike any system in the body and he's concerned it's attacking my heart. The cardiologist has previously done an echocardiogram, chest xray and ultrasound of my valves, but they will be discussing an aortic catheter procedure and something else I forget. I get B12 injections because I don't synthesize it properly. I practice Qi Gong and used to practice yoga, need to start that again and I walk every day. I used to swim 4-5 days a week, I miss that. Hashimoto's is an autoimmune disease where your body attacks your thyroid, it has a whole host of co-morbidities and disrupts hormones and pretty much every part of your body. It was originally misdiagnosed. Moving and getting a new doctor is how I got this far - she took one look at my medical history and sent me to the rheumatologist exactly because the Raynaud's is usually linked to Lupus. You know what? I diagnosed myself and force fed it to my last doc who kept poo pooing me off. The blood tests showed conclusively I have it, and I experience all 3 color changes, it affects my hands, feet and ears and becomes painful. The worst is when they quickly progress to white and waxy - that can cause tissue death. I have to wear gloves if I handle frozen food, can't sit in front of an air conditioner, pools make it flare unless I find a heated one, and stress makes it explode even with the medication I take for it no cold required. I think the last tests I had run included checking for scleroderma markers. I know I am positive for thrombosis.
I also really dislike doctors and hospitals. I am stuck with them, though. Lupus will mean my fibromyalgia was a misdiagnosis, and apparently specialists in the know say it is usually a sign of something more serious, like Lupus. As I was going through Lupus symptoms with the doctor as well as chronic Lyme I realized some of these things have been present since I was a child. Made me pretty angry.
I am a fan of medicinal marijuana, but live in a state that prosecutes quite agressively, which sucks. I do without. Thank you for your offer. I'll be inboxing you.
HUGS back, LF. You are a true friend.
|
|
|
Post by Aish on Aug 30, 2015 13:29:43 GMT -5
Emotionally I am doing better today.
The thing that sucks about everything I deal with is they are mostly invisible diseases. I have caught major shit over the years whenever I have a bad flare and get told some version of it's all in my head, I'm lazy, I just don't to xyz, etc. I have lived with daily pain and chronic fatigue since my early 20's. Some days and even some weeks and months are better than others.
In the last 2 years I have noticed differences in my body composition, skin texture, hair falling etc that are not age related. I remember trying to show/talk to one of my brothers about it. Bad idea.
I didn't know until my appointment Friday that RA can literally destroy tissue and bones.
|
|
|
Post by LonelyForsaken on Aug 30, 2015 14:43:39 GMT -5
"I am a fan of medicinal marijuana, but live in a state that prosecutes quite agressively, which sucks. I do without." - I've been getting more and more pissed off about this as I get older. I live in California so I don't worry too much about the legal issues but I have been unemployed for nearly two years now and am always looking for a job. The length of my unemployment is because of where I moved to. I'd never have moved here without the promise of a job but that didn't happen. So, until I can find a job to move to, I'm stuck here where the rent is really cheap.
Medical Marijuana - I generally do without. My needs aren't crucial; insomnia, joint pain, and depression, but I helps a lot. It doesn’t take much. I've been nursing a 1/4 oz. for a month now and still have half of it. What I really miss is living with a grower. I used to take the leaves that get thrown away and make an oil out of it. Used as a massage oil or just rub some on knees and elbows is like a miracle dug. I think you (Aish) could really benefit from the oil.
I'm looking for work in Colorado and Washington. I'm a Medical Marijuana advocate. Recreationally, I feel it has some risks and children should avoid the THC versions. The CBDs are safe though. The benefits are unbelievable and if properly used I see little risk to all but a rare few. These two stats have voted in recreational marijuana laws. That tells me two very attractive things; they're not hung up on old propaganda and they are thinking outside the box when it comes to the need for jobs.
It's a shame about your old doctor but it sounds like you got a good one now. I am limited to literally no choice here unless I want to drive two hours or more. They change all the time though and while I feel their competency level has been ok my condition is largely self managed. They diagnose my blood works, listen to my heart and lungs, write prescriptions, and I pretty much do the rest. I do find it hard to find a doctor that actually listens to the patient. I've known only two in all my life. I've educated myself on diabetes and a lot of other things. It wasn't hard to do and nobody can know my body as well as I do. That is why I feel doctors need to listen but they have procedures, test results, and treat everyone as the common denominator. Get 'em in and get 'em out. I live with a hypochondriac so I can see how this can be taken too far but they really need to learn how to listen. Your immune system issues are far more complicated and there are a lot of unknowns. They have pretty well figured out diabetes but immune systems are still a grey science. You're stuck with relying on doctors far more than I hope I ever have to. Misdiagnosis is common in this area too. I'm sure you are already doing this but you have to educate yourself on all this the best you can and self diagnose. Taking notes can help identify patterns. Don't be afraid to ask that certain things be looked into and don't be afraid to demand it be done if you have to.
Hugs
|
|
|
Post by Aish on Sept 25, 2015 6:31:05 GMT -5
Updating this to say that thanks to more testing I now know I do NOT have Lupus - but I DO have pulmonary hypertension and scleroderma. My rheumatologist looked me square in the eye and said "I would rather you have Lupus. We can treat Lupus." There is no cure. There is no treatment. The disease manifests and progresses differently in everyone.
I can't sleep. I am f*cking terrified.
|
|
|
Post by LonelyForsaken on Sept 25, 2015 17:11:31 GMT -5
“I can't sleep. I am f*cking terrified.” – First – HUGS. I wish I could give you a real one and use this gift of a calming influence I have on you. Your last statement reminds me of a 14 year old boy listening to doctors tell him he was a diabetic and I would need insulin shots daily before I turned 30. I hate needles. My grandfather was a diabetic and I heard all my life how he was bed ridden, how they took him apart one piece at a time, removing fingers, toes, feet, hands, arms, and legs over several year, until they gave him the wrong bag of blood that killed him during one of those operations. It sounded like a mercy killing at that point. They told me all the horror stories to impress on me the importance of taking all this seriously and this all started after 14 days in the hospital getting poked so often I couldn’t move either arm without a lot of pain. I had to ask them to start using the other arm because they made hamburger out of the first one. They hooked me up to all kinds of machines and even had me on a Fing breathing tube for a day while fully conscious. It was a nightmare. Hugs I was 42 when I started taking pills for diabetes and at 52 I still have not had one insulin shot. My circulation is still excellent and I have all my fingers, toes, and limbs. Over the years I learned that doctors have to consider the worst case scenario and prepare their patents for it. I resented their scare tactics for some years because it isn’t necessary to use them on me but eventually I realized it’s not really their fault and they don’t really mean to scare us but they do need to educate and prepare us. I watched my aunt go much the same way my grandfather went and that was largely due to the fact that you couldn’t scare her enough to make her drop that piece of pie or pastry in the trash. She didn’t know how, or didn’t care enough, to take care of her health. You do. I told her many times that she had to quit baking all the time but it was too much a part of who she was and it killed her early. Diabetes is mostly diet and exercise and that takes a lot of self discipline, something I’ve discovered few people know anything about, but I know you do. Perhaps that will help you with this but I admit I don’t know much about it yet. They don’t know everything about scleroderma or our autoimmune system yet but they do know some. No, it’s not curable and they can’t treat it, but they can treat the symptoms and even reverse their effects and damage, especially if caught early. And, as you said; “The disease manifests and progresses differently in everyone.” Diet and exercise are always important for a long life and do your best to avoid and reduce stress. Some cases are really bad and others hardly affect the patient’s life and health at all. You have some advantages as a healer. You’ve known for a long time that something was wrong and have done a lot on your own to take care of it. The recent stress, lack of sleep, and not eating well has made this manifest itself in the worst way it can at your young age but it is reversible. This may be a preview of things to come in 20 or 30 years but they will learn a lot more about this in that time. They just found a cure for Hep C. They have made remarkable strides of improvement for treating Aids and Cancer recently too. They are working hard on our immune system. Aids has really pushed them hard in that area and they’re making headway in all things related to our immune system. The pulmonary hypertension worries me more but this isn’t hopeless either. Stress is about the worst thing there is for this one though. Smoking is the worst but I know you don’t do that. Hugs
|
|
|
Post by twistedangel on Sept 26, 2015 10:44:26 GMT -5
Aish sorry to hear about wot you going thru...lean on the ones you love
vent when you need to...dont pretend to be strong in times you not
you will be in our thoughts
xx
|
|
|
Post by Aish on Sept 27, 2015 1:59:05 GMT -5
Heading out into the wild early tomorrow morning. I need to sleep out in the open and dance under the moon for a few nights.
|
|
|
Post by Veritas on Sept 29, 2015 23:58:29 GMT -5
...
|
|
|
Post by Aish on Oct 1, 2015 15:47:10 GMT -5
Spending the eclipse camping was interesting. I didn't sleep, but I did find a lot of darkness within and had a good, erm, chat with the universe. My Self is still pushing things forward. Interesting article regarding bacteria and chronic diseases www.roadback.org/index.cfm/fuseaction/education.display/display_id/102.html*Hugs everyone* Angel, this is a time I know I should probably lean, but I don't do that very well. One of my sisters is battling thyroid cancer, so I am not happy with myself for even telling my mom I'm sick. She has a lot to deal with right now. In fact, everyone still connected to my life has their own shit storms raging and I'm kind of on my own, so I am very grateful for you all. Ghost and Ed, you guys rock. Ghost, I have more tests scheduled for next week : a PFT, barium swallow, and another echocardiogram. I am hoping I will be given treatment options once those results are in. However, the rheumatologist was very clear when he said there is no treatment and no cure, we just have to manage complications as they arise. I am taking medications now, 2 for blood pressure, 1 for the Raynaud's (though to be quite honest none of them work worth a shit) and T3 for the Hashi's (it does work). I am continuing with my own plan of yoga, DMSO, biotin, turmeric, cranio sacral therapy, and I'm going to Juarez to an internist my therapist recommended for vitamin injections and antibiotics. Hi, Star - been awhile. Nice to see you kicking rocks.
|
|
|
Post by LonelyForsaken on Oct 2, 2015 16:51:37 GMT -5
“The ultimate proof that certain bacteria could cause stomach ulcer disease was obtained when a physician-researcher drank a culture of the ulcer-producing bacteria and produced the disease in himself.” – From the article you link to.
This is the biggest problem we have with science today, ALL science. We are such selfishly egotistical creatures that status and prestige trump truth and fact. Don’t you dare contradict my work because I’m the leading authority. Sigh! This man had to infect himself before anyone of renown would lend credit to his proof. That is just all kinds of wrong.
|
|
|
Post by Aish on Oct 3, 2015 20:15:36 GMT -5
“The ultimate proof that certain bacteria could cause stomach ulcer disease was obtained when a physician-researcher drank a culture of the ulcer-producing bacteria and produced the disease in himself.” – From the article you link to.This is the biggest problem we have with science today, ALL science. We are such selfishly egotistical creatures that status and prestige trump truth and fact. Don’t you dare contradict my work because I’m the leading authority. Sigh! This man had to infect himself before anyone of renown would lend credit to his proof. That is just all kinds of wrong. Absolutely. I have run into this over and over in my lifetime. Look at the efficacy and safety of vaccine debates. Or the use of the Budwig diet and vitamin injections to combat cancer. Or the research that proved IGF-1 hormone is THE switch for cancer. For systemic scleroderma I can apply for a trial where they are using stem cell therapy and bone marrow transplant but I literally have to be knocking on death's door before even being considered. I do not understand that philosophy. If it has the potential to reverse the disease, why make patients wait so long? I am obviously going the antibiotic route first.
|
|
|
Post by LonelyForsaken on Jun 3, 2016 14:32:35 GMT -5
My mom is in the hospital and she won't be coming home. She can't breath on her own anymore. I miss her so much already.
|
|
|
Post by twistedangel on Jun 4, 2016 2:29:04 GMT -5
I really really hate this thread ....I can write sympathetic words, how cold an empty they seem on a screen without being able to give a physical hug Thoughts to all XX Would say prayers but I don't believe an if I did they wouldn't be very nice..god your a wan*er
|
|