Happy to Be Myself

So glad you are gaining back weight! And thanks for the support. They do not look great, imo, but it's what it is. I went to doc yesterday to start getting treatment here in CA so on the right road!

What are they trying hon?

So far just gave me fluids and electrolytes, reviewing records and making referrals to GI, Neurology, cardiology and infectious disease. It's kind of complicated case.

That's a good place to start. Better than them giving you a whole slew of drugs without knowing what they are dealing with! :)

Thanks!

Thank you so much. Attitude is everything! I will keep you in my thoughts and prayers. It is life-changing, and not without difficulties but it's worth it, a positive step toward health in the long run. xo

Thank you! Busy moving into new apartment today. Still sick but better and found a Lyme disease expert here so looking forward to getting the help. I hope I can start juicing again once my stomach is a little better. Shipped my juicer here from Maui! You are sweet to check on me. Xo

Good for you! A new place to live and a new start! Sounds like things are looking up, and your juicer too!! Happy for you Maui!

Thanks so much, you are so sweet. I really need and appreciate the support!

thank you so much. I had colonoscopy July 20, looked normal but biopsies came back with microscopic colitis. But I think it's all part of the dysautonomia from my lyme disease, prompted by the surgery trauma. What are the immunosuppressants? They tried me on Lialda, but I passed out. Hoping the docs here will be able to make sense of this and help me with the Lyme disease too.

I don't know if its ok with the Lyme , but Remicade is on label for colitis. It may be covered by insurance. My daughter needs it but we can't get it because she has an orphan disease and its off label, even though it has been proven to work on her disease. Provincial insurance won't cover it, and it's over $3000 per infusion (every 6 weeks)! It is the fastest in inducing remission of symptoms but you have to be considered to have mod to severe as well as having tried all the milder drugs first. That's how it's done in Canada anyway. Ask about Remicade. I also have a friend whose daughter has Lyme,, and they go to the states because the doctors are better treating Lyme there. Your in good hands down there doll! Just need to get this under control for you!!!xoxox

Remicade, ok I'll ask about it. Yes, I think I'll get the care I need here. So sorry your daughter has to struggle with colitis :(. What is an orphan disease?

An orphan disease is one that is extremely rare. In her case it is Behçet's disease and 1 in 400,000. Orphan means there is no drug on label to treat it because drug companies don't run trials for an illness where only a few people are sick, it costs them too much to trial and then through FDA for approval. She has ulcerations all over her inside and out, skin, bladder, mouth, but because there is none in her intestines ....yet...they won't give her the Remicade! Definitely ask about, it's the best biological out there!

Wow, that is just not fair for her. I will pray for her and I'm so glad she has you for an advocate!

I never heard of an orphan disease and I think that sucks. I will keep her in my prayers...that's why you know your creams and everything to go with it. Our children are our hearts and I know we all would do anything possible for them. Just asking how old is she hugger?

Yes, that's why I know the creams. And a lot about immune responses, treatment, and medicine. I am no doctor, but have had a crash course it this for about 8 years now. My daughter is 21, and has been ill since she was 15, even though it is a genetic issue she was born with and didn't have any symptoms of until 15. Two years before that, [RS bleep] hit the fan in our lives, and the 'trauma' is what the doctors call the 'trigger' or 'smoking gun'....

Trauma will do that for sure. I don't know how I made it through our worst times. I did get sicker, and had to stop working, but because there was so much to handle, I seemed to be able to pull it off. When my husband relapsed into addiction, he left us for my oldest son's wife. They left together, and my son attempted suicide and was hopsitalized for months, then I had to take care of him 24/7 for another year. My husband also stole so much money and lost $300,000 against our mortgage so the house had to go. Our home for 26 yrs. No job, no health, no husband, then he died from melanoma while we were still in process of divorce. A year after his death, after moving to Maui to get away and heal, I collapsed. Now collapsing again, and I think the explant was the trigger this time.

K, same pile of one nightmare/trauma after another for you too eh!!!. No wonder you are in such rough shape. Sounds like the explant was ANOTHER trigger in a long line of them too! Me too same crap. I was fine through a hellish childhood where I was born to a manic depressive/ psychotic mother who wished she never had me. I was kept in various parts of the house from days to months when she could get away with it. In and out of the hospital, thought she was Jean the Baptist for a whole freaking year. She tried to drown me at 8 (saved by my sister), held a rifle to me point blank (saved by my dad), and tried to poison me at 15 (I ran away and never looked back). I seemed to recover, and move on, didn't fizz me much, as I was so happy to be free of that life. I got married, had 17 good years, and then BAM, [RS bleep] hit the fan, and we relocated. But then I stopped sleeping, with 5 different sleep disorders, still working part time with 2 traumatized pre-teens. The doctors drugged the hell out of me to get me to sleep, and no go, even 5 years, then they medically retired me because of PTSD for good, saying the amygdala and hypothalamus are damaged. I think we are paying the medical price for the [RS bleep] we have been through. You and I both need to be retired to pasture! You know...like a race horse who was put into one too many races, ran hard and put away wet, so to speak. Now we are walking disasters, but still fighting to get better. Just need peace and quiet. Hang in there hon! We are both gonna improve! And then we can just graze. We needed these implants out for health reasons. The explant has been way harden on you physically than me, but you are always positive and down right determined to get well. And with that fight in you, and hearing your real story, tells me you got what it takes to get better! Biiiig hugs to you Maui! xoxox

Thanks so much :)

We learn by life's hard lessons sometimes. I bet you know a lot more than a lot of doctors. When I get really stressed over health, mine or my husbands, especially his. I have to just spend time in prayer and quiet in my room and get my thoughts together. Sending love and prayers to you and your daughter.

After listening to you two I know how it is. I won't go into it but I had a mother with mental problems too and constantly trying to kill herself and blaming me. But not to the extent of you hugger. And maui I have lost everything I had so many times during 5 marriages, all addicts or alcoholics. Except my honey (#5), who wouldn't touch a hair on my head. I have physical scars and mental scars and have been diagnosed as bi-polar by mistake and on sedating meds and made my own suicide attempts. But my life has finally straightened out at 62 and I finally own my first home ever! I think what we have been through has made us stronger and better and more loving and considerate of others. God meant us to travel this road, just my belief, to made us better people. Love to both of you!

Thanks soon2be! I'm sorry we have to share this type of history but it just makes us stronger to know we are not alone. We are all amazing women!

Thank you, yes prayer and meditation have saved me.

"Life lessons" I think they are called. ;) Because she has such a rare disorder, both her and I know more than our regular GP, and any doctor at a hospital, unless they are rheumatologists. The last time we went to emerg, the attending physician walked in with a printout from the internet of what is Behcets...he looked it up on the internet!!!! Freaking scary [RS bleep]! Even with the rheummies, some have never even seen a Behcets patient in their entire careers. Its crazy sorta. We have read just about every study out there ever written on it, and have been forced to look into complimentary medicines to help while we wait to be granted the drug. Its helping alleviate some pain and heal the skin better, with no side effects or chemicals. Quiet and prayer time, right there with ya...Thanks for the love and prayers Soon! Can't wait to see your pics this week! xoxox

Yikes!!!! Soon!!!! Welcome to Club Trauma! lol :) You two are just making me wanna have a big ol group hug!!!! K, your coming out to pasture with me and Maui too, lol. Congratulations on the home!!! :))) Thank God for #5!!!!! I could use the love of a good man, but have too many people to care for already, and haven't found one that has bigger balls than I do, lol. I believe too that God has his reasons, and I am to be grateful for what I have above all else. Love right back at ya doll!

I know eh? How bout we just get down and dirty, and hang our real [RS bleep] out there? Wow, its been a real TRUTH sorta day hasn't it ladies. I think we just bonded on a whole new level!!!! This has gone way beyond boobs, ha ha ha! Amazing women for sure Maui, we seriously kick ass! Or is it we have had our asses kicked and we are still kickin? Hmmm, not sure, will need to ponder that! xoxox

Haha, both!

No, nothing yet. Barely survived trip and now trying to see doc, it will be tuesday. But today, I was able to walk 5 min to the beach, that felt great, and I ate better with less pain. Small victories! This has been so scary.

Small victories, but that's how you eventually win the war! Keep on the soft bland food! Small amounts at a time too! Have you been told to stay off raw foods, or the juicing? In some people they are major triggers for colitis.

Yes, off raw food and juicing for now. Eating baby food, lol.

That's about it eh! Hang in there hon! Xoxox

One day at a time, that's what I've always been told. Glad you're making some progress! At little walk to the beach sounds great, you must live very close. I would love that, actually a weekend at the coast here in Texas would be great. Still thinking and praying for you. I'm wondering if explanting and weight loss go together or if it's just more traumatic than we thought. Hugger was telling me about the raw foods, which I am slowly trying and how it might effect my IBS. I see my PCP this week too, so I might ask him about that. Hang in there hon, we're all behind you! xoxo

Oh I hope you can do raw foods, I just cannot. I think juicing might still work for me once I get through this a little more. No fiber to digest then but all the nutrients from the veggies and fruits. I am staying close to beach right now, until I find a more permanent rental. Thanks for all your support and let us know what the PCP says!

Thanks Mozzaa, hope that the meds help. Remember they can take some time to kick in. We will get better together. You are in my prayers as well!

I know !! They really kick in ! But hopefully Will help, your Right my dear we're going to Get better together. God is great and Will help us. Take care sweetheart.

Hugs to you Mozza! Glad you saw the doctor. We been missing you around here! Xoxox

Yes, let's both rest and heal, rest and heal. My appetite is from low potassium. Maybe have yours checked? Please get good care sweetie, we are precious gifts and need to treat ourselves that way. The green juice recipe can be altered, personally I can't have more fruit sugar, but some people add other fruits, or beets which are great for blood cells. Tumeric root helps my pain sooo much, missing it now. Lots of detoxifiers in those veggies! Phytonutrients that haven't even been identified in fruits and veggies, so important to just eat lots of them. Not in my cards, atm, but I am working on it!

I found out I was anemic when I had my lab work done for the Explant, and today I had a bunch of lab work today getting for my appointment with my PCP next week. I'm thinking about using beets in a juice for my blood. I didn't know turmeric helped pain, that's great to know. I couldn't find the turmeric root at Whole Foods, have to check a health food store I guess or Sprouts so I used some of the organic ground that they had in bulk. That would be awesome if it helped my back and hip pain. The injections of radio frequency I went thru last Friday so far haven't helped and tomorrow is a week so they probably aren't going to. Where would you move if you came back to the states. Thanks for being here, I'm glad we crossed paths.

I think the tumeric root will help a lot. Just a pinky tip size in each 16 oz juice. Vary it up, I always use tumeric, ginger and green apple and lemon, but then I add whatever comes in my crop share. Spinach is extra mild tasting, cantelope is good, low Glycemic index. Turnip, okra, whatever, lots of greens of course. Collard greens very high in nutrients, leaf lettuce not as much. You get the idea. Try to think 80% veggie, 20% fruit in your juices for maximum nutrition and lower sugar. If that's an issue for you. If you can handle the fruit sugar, and need to gain weight, add more fruit. If i come back to mainland, I will stay with my daughter in southern california at least until I get better. 2 sons still in Maine, and I want to spend summers there eventually, raise my grandchildren there on the coast like i was and like I raised my kids. First things first. Feeling slightly better now, all bad meds seemed to have cleared my system thank God. Pm me anytime. If I'm well, I'll respond for sure. Glad to support you in some small way.

Thank you, feeling a little better today. Feeling like there is hope. Blessings to you as well!

Awe, thank you, same to you, hugs. Steroids were capsules, corticosteroids to treat the severe colitis. I had a horrible anxiety reaction bordering on psychosis, plus making my fragile health more compromised. My dad had same thing, which is why I said I didn't want steroids. They assured me, wrongly, that they would not be systemic, just localized to my GI system. It was a nightmare, just now clearing so I can think, not want to hurt myself, and not feel like I am dying from anxiety, paranoia. I'm a psychiatric clincician by education and experience so knew what was happening to me, but it didn't make it much easier. And no one would listen for days. My colitis is an auto immune disease too, I'm learning. So sorry to hear about your daughter. My dad had lupus and sister still does. fortunately, she can handle the steroids. It's my daughter who is coming to help, thank god for her. I'm using coconut oil and an essential oil by doTerra, Immortel, to help heal my breasts. Hugs back to you!

Thank you so much, xoxo!

Thank you. They say colitis, but I think I need a better exam, testing, docs, on the mainland. One of my friends daughter almost died here on maui from colitis, because they kept telling her it was the flu. She had to fly to Seattle to get accurate diagnosis and immediate hospitalization. I feel slightly better right at this moment and so happy my daughter will be here in 3 1/2 hours! hugs back to you, hope you are doing well!

Have you been tested for Cyclospora? It's that horrible parasite that has made people sick so far in 16 states and even killed a few. I guess it came from packaged produce foods (packaged salads in stores; but also several restaurant chains have had food-service supplies that were tainted). Anyway, if you are having mystery gastro problems, they ought to test you for Cyclospora (they don't do this test standard since its a rare infection). I don't think they have confirmed any cases in Hawaii yet, but I know most of your produce (non-tropical) is imported from the mainland and they add more and more states to the confirmed list all the time. The symptoms are diarrhea, nausea, GI upset... But Cyclospora lingers and symptoms can continue for several months with no treatment. Anyway - just a thought, you seem like a healthy eater - and as a salad lover myself, I have been scared to catch this nasty bug!

Thank you for that. Once I get to the mainland I will mention it. I'm sure they will start over and do a battery of tests there to check diagnosis. I eat 95% of my veggies from a local organic crop share but I do eat out on occasion and buy non local green apples for juicing. So there's always a possibility. thanks for thinking of me!

I was thinking the same thing! Cyclospora is nasty; a friends 4 year old tested positive....lost 8 lbs in 2 weeks. As a salad lover too it's hard to eat one lately!