Amber's Organics LLC Newsletter. > New! Inspire us! Stories of the month.
New! Inspire us! Stories of the month.

Oct 16, 2017

New! Inspire us! Stories of the month. I am featuring your story to encourage, uplift and allow others to benefit from any valuable information you have gathered that may in turn, help them. Let your light shine, let your hope be the inspiration for those in the difficulty of challenge.

Please text or email if you want to be featured next month.

Meet Joanna.

I was born with a rare primary immune deficiency disease called hypogammaglobulnemia. In short I was born without a whole immune system and never developed a complete immune system leaving me vulnerable to infection and malignancy. Management of my disease involves weekly infusions of antibodies from plasma donors. With this condition I suffer a whole host of ailments- severe migraines, GERD, nausea, muscle & joint Pain. To survive & have a quality of life I take super good care of myself, eating right and getting enough exercise and rest. Despite this 3 years ago I was also diagnosed with immune related porokeratosis which is a rare skin condition that can be precancerous. There are medications doctors can prescribe to manage it, though few seem to actually work and there is little to no research in the USA. One at a time I tried each treatment and was really scared to find most seem to spread my porokeratosis- not improve it. I think it is because I have an immune disease any anything like steroids or chemo that can lower the immune system can make a condition like porokeratosis spread like wildfire in me. Soon what was just one innocent spot had spread over most of my body. My skin was red, itchy and sometimes open and bleeding. I was quickly loosing quality of life.. my other symptoms and side effects are bad enough- who really wants to live with what feels like chicken pox every day of their lives? I reached out to my rare disease friends who are some of the most intelligent & amazing people I know. Lets face it- its not that hard to grow up healthy. To make it as a sick person with a little known disease- not that takes some smarts! One suggested tea tree oil which I started applying in addition to the one medicine that did not seem to make my skin worse, though showed little promise in actually being strong enough to make a difference on its own. Sure enough the addition of the tea tree oil in addition to my 2x a day medication seemed to really help it along. Later I added other oils- Calendula oil, frankincense & myrth as well as tumeric and Vitamin D3 Creams and they too seemed to calm my skin and help heal my porokeratosis spots. As time went on I found many baby products like diaper rash ointment also very helpful. Today I still have a few spots and need to have them seem by my dermatologist regularly. I apply my medicine 2x a day and my oils and ointments and night and wear sunscreen religiously. But to most people I have clear and healthy skin. An untrained person would have trouble finding any spots. So essential oils and ointments have not yet caused a full remission they have given me back quality of life and ALMOST perfectly healthy skin. I still am trying different combinations of oils in the hops of one day being cured, but in the meantime I can live with how my skin is today. My advise for anyone with an incurable condition is not to give up hope. Sometimes nature does have a little help for us- we just have to find it.

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Meet Tanja and her daughter.

I wanted to share a story about my youngest daughter and the health issues that she's endured, which has affected her overall wellbeing and social life. She's had various illnesses since she was little, and one of them happened to be social anxiety, which would cause tachycardia, or better known as a rapid heart rate. She would get so besides herself and would be in a full blown panic attack in no time, so she was put on medication. It was medication after medication, which really didn't help, regardless what it was. I would try to do errands when the stores weren't crowded because she would get very panicky, start to sweat and felt lightheaded. I always made sure that wherever I went, she was by my side because I figured that I'd be the one that could calm her if she happened to have a panic attack. Life went on like this for years, and we just accepted it for what it was. Fast forward to about six years ago, I started to see how bad my daughter was getting ran down, and she'd be fatigued so easily, which was basically by doing nothing, other than her normal morning routine. I took her to the Dr and he started running labs for the obvious things, such as all hormone levels, which showed she either had the hormones of an 11 year old girl, or a woman starting menopause, so I figured this was probably part of the cause of her fatigue. However, I had noticed her blood pressure was also way too low, so I brought that to the Dr's attention right away. He gave us a referral to start seeing a pediatric cardiologist, so I had hopes of whatever was going on to be resolved. Of course the obvious thing to do was keep an eye on her blood pressure and pulse, but meanwhile they started running several tests, which I was so grateful for. It gave me hope that we'd soon be finding out what was going on! One of the tests were for her to wear a holter monitor for two weeks, but wouldn't you know, the whole entire time she only had one tiny glitch, so it didn't point to anything major. Go figure! The cardiologist was still concerned about it, and said it has to do with the electronics of the heart, so we'd have to see one of his partner Dr's. Needless to say, that went over like a lead balloon because I could tell that his partner Dr. didn't appear to be taking this very seriously at all. Rather than to be negligent, he could've just said he couldn't help us and sent us on our way, but instead he said my daughter needed to exercise more and drink two bottles of Gatorade per day. Yes, that's seriously what he said, so my reply was something along the lines of "I don't think you're fully understanding this because my daughter exercises for at least an hour every day, but she's to the point that she can no longer do it, she's getting very lightheaded and she's just drained". He said that the Gatorade would replenish the electrolytes, which is true, but that's not what's wrong with my daughter, so I'm not even about to accept that answer as her "prescription". My next comment was to tell him in so many words to "shove that advice, I'm taking my daughter to a real cardiologist, and one that will actually try to do something more than tell her to get more exercise and drink Gatorade"! No, that wasn't the nicest way to fire a Dr, but it also wasn't very nice of him to be negligent either. We ended up going to another Dr, which he was certain he knew what was wrong with her, so she was then diagnosed with POTS, which is Postural Orthostatic Tachycardia Syndrome, which made a lot of sense with the panic attacks. This wasn't just an issue with passing out and panic attacks though, her blood pressure was running way too low, which would be about 90/55 on average. He said he didn't need to run any tests since she had the symptoms of POTS, so he put her on medication. It was one medication after the next, but my daughter seems to be very sensitive to all medications thus far, therefore she wasn't able to take them for very long before she started having a lot of serious side effects. Once again, it seemed like we hit another brick wall and had to accept it for what it was. I was getting very frustrated and rather tired of accepting that as the answer when I knew deep in my heart that there has to be someone that can help her! She went on like this for a couple more years, but now the symptoms are really bad and it was messing with everything from her digestion to just being able to stand up without feeling like she's fixing to pass out. I went back to the primary care Dr and had a talk with him about everything going on and asked for a new Dr because we were just in limbo and my daughter was getting so much sicker! At this point, we've now ended up with the third cardiologist, but within the first appointment I was feeling more confident about the fact that this Dr knew what he was talking about. He didn't want me to take his word for what he believed she had, he wanted to prove it to me by running tests. Fine by me, and I gladly welcomed his suggestion! Before that testing even rolled around, I thought I heard my daughter say something, but she was in her bathroom and I was in my bedroom, so I paused the TV and I hear a very faint "Mom, help me". I jumped up and ran to the room, which I then see the color has drained out of my daughters face and she's literally turning grey, soaking wet from sweating and she couldn't move. She started to lose total control of her bodily functions, so I knew this was a really bad episode. The first thing I thought of was her blood pressure is way too low, so I ran to grab whatever I thought could get her out of the crisis right then, which was Himalayan salt, the blood pressure monitor, and water, so back to the bathroom I went to give her salt. I told her to put her hands out, she has got to eat this salt! She couldn't move, she could hardly talk, but she managed to say "I can't". I lifted her head up and started putting the salt in her mouth for her because if we didn't get this blood pressure up, I was afraid I was fixing to lose my daughter! I gave her a couple good size pinches of it at first, and then more that was about the size of a nickel. I grabbed her water and asked her if she can swallow, and if so, she has got to drink a little bit of water to rehydrate, which she was now able to do. After first doing all of this, I then checked her blood pressure, which was 59/37, so I know the bottom number had either been in the 20's, or very close to it before I gave her the Himalayan salt. The tests couldn't come soon enough at this point, we needed answers, and very quick like! Within two weeks, my daughter was at a Major Heart Hospital doing a tilt table study, and then an EVP study to follow two hours after the tilt table study, but only if it were necessary. We had all been praying for answers and help for a long time, so as you can imagine, I was so excited! The Dr met with my daughter and I to see if I had any questions before they started, which I told him no, I'm just glad to be there and felt like we were on the road for my daughter to get better! They wheeled her into the room to do the tilt table study, so I went down to the cafeteria to get a cup of coffee. It hadn't even been ten minutes and I was already getting a call from the hospital to get to the same room immediately, the Dr needed to see me. Of course I'm a nervous wreck at that point, and not knowing what was going on because they just took her back there. I hurried as fast as I could and got to the room, which the Dr was already there waiting for me. He wasted no time in telling me that just at the tenth minute if standing, my daughters blood pressure had totally bottomed out, but she didn't just pass out, she was unconscious! He had stated that she has a very bad case, and sometimes the only way to prevent a person from going unconscious when they're this bad is to put in a pacemaker. He then said he needed to get to the procedure room because he's running the other study right then so he can make sure that there aren't any abnormalities or defects in my daughters heart. I was in such shock that about the only thing I could think was "How could she need a pacemaker, she's just 18 years old"!? I was finally able to go see my daughter about an hour or so later, which I was still kinda numb from being in such shock with all of this! All I could and can really say after all of this is "Thank you Lord for watching over my daughter, and for giving the Dr wisdom to do his job"! The Dr had put my daughter on two new medications, which she started the next day. Needless to say, those didn't work out, but there's only a total of four medications that they even have for what my daughter has, which isn't POTS, it's actually Neurocardiogenic Syncope. It involves the nerves in her brain, which then can affect anything from that point on. The Dr had her try the other medications as well, but to no avail, those didn't work out either. The ONLY thing that has worked to this very day is to give my daughter Himalayan salt to bring her blood pressure up immediately. Yes, imagine that, something that is natural and was created for us! I was okay with her using medication, if it were totally necessary and had worked out, but it didn't. The side effects and long term effects were horrible, which could affect her blood vessels to no longer pump like they should, (which is already an issue to a degree) and the steroid use long term will destroy the bones, along with just about the whole body over time! I guess it's a good thing that Himalayan salt is so easily accessible, which I now buy in bulk. I make sure to have a bag in my glove box, my bedroom, my purse, my daughters purse, in her bedroom and in the kitchen. The scary thing is that there was absolutely NO warning when the episode hit. I'm now checking into getting her a life alert bracelet, so if she were to fall, I would be contacted immediately, just in case I couldn't hear her. We will be going to a Neurological Institute in the beginning of October, so we're definitely praying for the much needed help for her!