Ten Months In - What Has Medical Medium Done for me Lately?: Part 3: The Update

Part 1 of this story is here.
Part 2 of this story is here.
Now it’s almost 10 months later, so what do I have to report?
~ A general lessening of my anxiety. I can make phone calls and sometimes talk to strangers and on occasion I’ve even ventured out into the world by myself. I’m still working on that, I think I have a lot to recover from that needs addressing. But it’s huge progress.

~ My depression has lifted. It used to be like a dark cloud hung over everything  - all of my thoughts would spiral to dark and negative thinking, and there was just so much “what’s the point” attached to everything. Now I feel as a baseline, a general sense of hopefulness and like things will be okay. I feel like I CAN do things rather than that they are so overwhelming.

~ I have had actual entire pain-free days. WHOLE pain-free days. That is….it’s HUGE. It’s nothing short of a miracle. I’ve been able to sit and stand and walk and move around, and though my lower back is still an issue for me, there have been days where it actually wasn’t. It blew my mind.

~ I haven’t needed any sort of pain relief medication other than Ibuprofen for a migraine in months. I used to use medical marijuana tinctures if I needed relief because of my narcotics allergy, but I haven’t needed them at all.
~ For a long time I was taking Low Dose Naltrexone - the only medication I didn’t react to - to take the edge off mf my Fibromyalgia pain. Just to take the edge off. I still had the pain. But it made the pain liveable. By some snafu a couple of months into being on this path, I forgot to have my prescription refilled and was without them for a full week. And I noticed that the edge did NOT come back. Before if I didn’t take them for a DAY I would feel it, I needed that LDN. But a whole week and it felt like it always did. So I never got that refill. And I never needed anything else, either.

~ The itching. It used so be all the time randomly I would get itching. Mostly on my back, but also on other areas of my body. I bought a back scratcher and used it daily, multiple times a day. Now I still have itching on my back at times, but I can go days without touching my back scratcher sometimes. That never happened before.

~ My hair isn’t falling out anymore.

~ I’ve had more stamina to do things when I am able. I can go for walks sometimes, and we’ve been swimming a lot since we’ve been in the RV park we’ve been in, which has been great for me.

~ Speaking of swimming, I can get in a chlorinated pool and not have an all over body reaction and itch fest. I still make sure and shower immediately afterwards, but I’ve been swimming a bunch of times and have been okay. I couldn’t even be in a room with a chlorinated pool before. I’d have a reaction to the chlorine.

~ I just added another Magnesium supplement to my regimen - Pure encapsulations Mag Glycinate. My sleep has been AMAZING since adding it. It had improved greatly with everything else, but MG took it to a whole new level. I’m sure it’s doing other things, too, but that is definitely the most noticeable.

~ My skin. I have battled with rosacea and more recently, acne, for SO many years. And even until recently, I kept having flares and breakouts. But as my diet has gotten cleaner and cleaner, my skin is following suit. Since the skin is a reflection of what is happening in the liver, that means my liver is FINALLY getting cleaned out, which makes me SO happy! That means that pretty soon I can watch this fat start melting away.

~ The fat has already started melting away. I wish I could say how much, but I really don’t know, as I stopped using a scale a long time ago. But my clothes are getting looser, and I can see things on my body shifting and changing. And I know what my body feels like when it is losing weight.
~ The haze in my vision has left the building.

~ I can’t remember the last time I had flaky eyebrows.

~ Almost no migraines. I’ve had one or two in the last couple of months, triggered by unusual lack of sleep and stress. But generally I just don’t get them anymore. It helps greatly that I have learned what all of my triggers are and I actively avoid them, but even when I hit an inadvertent trigger, it’s been so much better.

~ Eating so many foods I thought I’d lost forever. I could write a whole post on this, I think, but I’ll try to keep it brief. Eating GAPs, then Paleo, then GF/CF, then Paleo again, then Autoimmune Paleo, then AIP with low FODMAPS. All that did was clog up my liver and make me sicker. I lost more and more foods and watched others have the same experience. But letting go of the meat and fats and eggs and eating as many raw fruits and veggies and even some lightly cooked veggies as possible, has given me back foods I thought I’d lost forever. Nightshades! I can eat them all again! I still prefer tomatoes and peppers raw to cooked, but potatoes I eat with wild abandon, and mushrooms! Oh, my precious mushrooms have come back to me. Fruits I reacted to before like pineapple, citrus and kiwi! I eat them. All of them. Celery juice every morning is restoring my digestion, and eating other healing foods as well is giving me the ability to eat more healing foods. It’s a win win!

~ My digestion is better - if I do get gas, I know it's a food I'm not ready for, because if I'm eating properly for my body, there's no gas. I'll spare you the details of the other ways I know. But it's better. I can tell that I'm absorbing the nutrients from the foods and supplements I'm taking and not just making super expensive urine, as has happened in the past from malabsorption.

~ I've been tracking my urinary frequency and BM frequency with an app on my phone, and things have greatly settled down in that department. Not such a ridiculous number of times a day anymore. That's pretty awesome!

Since I did the cleanse, my son has also started on a regimen of supplements and I’ve slowly been adjusting the food he eats to contain more of the healing foods as I just stopped having any “no” foods available.
He no longer has nightmares.

He had a stutter which has gone away  - this came with the addition of the Heavy Metals Detox Smoothie and a Zeolite supplement called “ACZ Nano”.

He has less panic.

He is more able to have his anxiety and still “do the thing”. Before his anxiety would be too overwhelming and he would go into a panic attack.

He has been able to make and play with friends online in a group, which was not something he could do before. One on one was all he could handle.

This doesn’t mean that all of my symptoms have miraculously gone, or that I don’t have the occasional flare of my symptoms. I do. But I have noticed that when there IS a flare, it’s never been as bad as it was every day of my life before I started down this path. And I always have secure knowledge that when it happens, it’s only temporary, which is a huge about-face from how it was before.

Before, a recurrence of symptoms was filled with dread and panic, because “OMG it’s all coming back it will never  leave I am never going to get better this is my life now AAAAUUUUGGGGHHHHH!!!!”

But now I know that it’s just a bump in the road, and that my healing continues as long as I eat the healing foods and take my supplements - it’s a certainty. A bout of strep or a flu isn’t going to take us back to where we were, chronically ill and in pain every day and unable to move or do anything. It’s just a temporary thing, and will pass, as our bodies get stronger and more able to fight them off for longer periods.

I still have a lot of healing to do. My body is deconditioned by years of chronic pain and fatigue. I have strength to build. My liver needs cleansing to be able to fully release all the extra fat I carry, and I’ll need to build my strength and stamina to be able to exercise to tone and condition my body.

But now I can. I know that it’s  a possibility now, where it never really felt like it could be before - not for many many years now.
I’m back in life again. I’m able to be with my family. We travel in the RV. We explore together. We go on adventures together. I take my dog for walks sometimes, when I’m able. I’m able to more and more. I go for walks with my family. Soon I’ll be able to hike again. It just keeps improving now, things just keep getting better and better.
If you're interested in reading the Medical Medium book, it can be purchased here. 

Ten Months In - What Has Medical Medium Done for me Lately?: Part 2: The Cleanse

Part 1 of this story is here.
Let’s recap the Medical Medium cleanse that I did back in June of 2016, shall we?

Day 1: Energy I'd never had before. Miracle level energy. Enough energy to prepare myself the juice, smoothies, and foods for the cleanse. I'm not even doing the full cleanse yet, because I eat lamb for dinner, and apple cider vinegar. But I'm "buzzing". I have this "alive" feeling in my cells I'm not used to. My mood feels lighter, I feel alert and clear-headed.

Day 2: Again with the alive, buzzing feeling after drinking the celery juice. I notice the edema in my feet is so much less that my feet just look like regular feet. I also notice my mood is lighter still and I feel pretty good. I want to get up and do things. I took the dog out without exhaustion afterward. I go outside twice today and can walk all around the yard. Usually I can't go very far, only a little way. This is blowing my mind.

Day 3: I'm able to do chores around the house and some cleaning. I'm able to be present with my son and engage with him. I do laundry, clean the kitchen, make the bed. No exhaustion afterward. Still no edema in my feet. No swelling. I feel amazing, and it's only been THREE days.

Day 4: Noticing that non-cleanse foods make me feel less great. Still feeling amazing with no edema. Still clear, energetic.

Day 5: Husband colored my hair with henna and I didn't react to the strong smell. Slight edema, but the weather has been very hot. Vision less hazy. Eyebrows less flaky. Feeling clear, lucid, present, like brain is back online. Less itching all over body. Feeling hope for the first time in years!

Day 6: Sleeping better. Less bothered by the heat. Feeling more rested after sleep. Feeling alive and clearer and hopeful. Showering again because I CAN now. Wanting to get dressed in the mornings rather than just live in pajamas. HUGE.

Day 7: Spiritual cleansing. By which I mean I had an experience at night that I can only describe as spiritual cleansing. As I am at a loss to adequately sum it up, you’re welcome to read about it by clicking the link to the post.

Day 8: Needing rest, but still enough energy to make all the food. Still way more energy than before, just feeling the need for rest and self-care.

Day 9: Barometric pressure change which usually takes me out - I feel it, but less so than usual. Brain isn't going to worst case scenario when confronted. Able to seek solutions rather than more problems. Fibromyalgia pain less.

Day 12: Standing and walking a lot, still have energy, no pain except in back, sleepy but not exhausted/drained at end of day.

Day 13: Have not had any POTS or Dysautonomia symptoms since starting this cleanse - I can bend over and stand up quickly and I feel the same - I can do these things without feeling faint! Whoa. Also no weird heart palpitations. What???

Day 14: Added dulse, had strong mast cell reaction. Added cooked sweet potatoes to slow down cleanse.

Day 15: Energy returning, clear head, body odor decreasing (not that I stank, but just normal level decreasing).

Day 16: Anxiety had been subsiding, but triggering event brought it back. Barometric changes causing pain and inflammation in body. Tried spirulina, too much detox, decided not to do heavy metals cleanse until later when more healing has happened.

Day 17: Huge stressful situation did NOT cause flare as it would have in the past. Anxiety level lower than expected given the situation at the time.

Day 20: I'm feeling stronger and happier, I'm more easily able to get through things, I seem to be reacting much less to things that usually trigger me. My skin seems to be getting clearer by the day. Dare I hope!

Day 21: I'm feeling so much more positive, despite massive amounts of stress being heaped upon our lives right now. It's going to be worked out, right? The angels say yes.

Day 22: Mast cell reaction to adrenaline and stress.

Day 24: Stressful situation broke with support and prayers. Back pain lessening, so much relief from stress.

Day 26: Was able to go to scented building without mask. Did yard work. Got a bit stiff from being deconditioned, but still felt good.

Day 28: Just the beginning.

So a summary of my results from the 28 Day cleanse :

~ The swelling in my feet has gone down significantly.

~ I have actual energy to do things in my day.

~ I'm getting stronger and stronger.

~ There is less pain in my back.

~ I can stand for longer periods of time, and walk for longer.

~ I can leave the house without a mask - that is huge.

~ Leaving the house doesn't mean days of recovery afterward.

~ My anxiety levels have dropped so significantly I feel like I can function again (make phone calls, meet with people, make plans outside of my house).

~ I am able to do some level of physical labor, like working in the yard.

~ My brain fog has lessened dramatically.

~ I can bend over and do things much more, without feeling my heart race and my BP change.

~ I am present with my family again.

~ I have been able to do physical things to contribute to my family again.

~ I feel hopeful.

~ I've been much much more positive and upbeat in general.

~ I've been a lot less moody and irritable.

~ My son is excited because now we can plan things like going to the beach and to festivals.

And that was just the first 28 days.
If you're interested in reading the Medical Medium book, it can be purchased here. 

Continue reading Ten Months In - What Has Medical Medium Done for me Lately?: Part 3: The Update

Ten Months In - What Has Medical Medium Done for me Lately?: Part 1: The Diseases

Oh right, remember how back on May 31, 2016, I posted about starting this 28 day Medical Medium cleanse? And how I decided to document it around Day 3, because miracles were happening, and I wanted to document so I wouldn't forget? And then occasionally here and there I'd make a sort of offhand reference to what had been happening, but really for the most part I haven't said much about it since? Yeah, me too.

I've been painfully aware of how much I HAVEN'T been posting about all of the amazing healing happening in my life as I've gone through this process.  I wanted to be, because my life is so completely different now to May 31st, 2016.  Not just because we live in an RV and travel around the country. Because of my healing! I am slowly becoming a part of the world again, and that, my friends, is a HUGE miracle.

Let us recap. When I started this journey, my diagnosis list and symptoms were long. If you want the refresher, the list is:
~ Mast Cell Activation Disorder (MCAD) which included red rashes on face/chest/body when exposed to allergens: petrochemicals, perfumes, exhaust fumes, gasoline, mold, pollens, grasses, smoke, strong emotions, hot sun, foods I am intolerant to, fluorescent lights. There is the possibility of anaphylaxis every time one of these exposures happens. I became homebound partially because of reactions I had every time I left the house.

~ Ehlers-Danlos Syndrome (EDS) which is a connective tissue disorder causing many subluxations in my body when sitting, standing, lying down, bending over, existing. Also caused hyperflexibility for a time. Caused weak ankles and a few fractures and a break, both ankles at different times. EDS can cause heart and brain issues and the need for surgeries. I cannot hold myself upright on my own when sitting or standing. It causes SO much pain. I began to need a wheelchair to go anywhere because of my inability to hold myself up to stand or walk. EDS requires a lot of PT to help manage the symptoms and function.

~ Chronic Fatigue Syndrome (CFS) (now renamed Systemic Exertion Intolerance Disorder (SEID)) which has the lovely effect of no energy to do anything ever, even shower, make food, or do dishes or a load of laundry. I “run out of gas” ridiculously easily. I can push myself to do “a thing” but then will pay for days afterward with flare of symptoms (exhaustion, pain, brain fog, need for wheelchair but too tired to be able to go out and make use of it), so am often homebound.

~ Fibromyalgia  which causes pain in random spots all over my body, fatigue, and brain fog. As a result, I am very sensitive to touch, which also makes me irritable and angry. Again, because of the pain I have need for a wheelchair to get around.

~ Obstructive Sleep Apnea which is multiple bouts of stopping breathing throughout the night, causing multiple sleep disruptions and inability to sleep, insomnia, and the need for CPAP machine to essentially breathe for me as I sleep.

~ Bursitis which is pain in my hips not alleviated by sitting, standing, lying down. I cannot lie on my side at all anymore from pain.

~ Arthritis in my neck and lower back. It causes pain and tightness and contributes to my need for a wheelchair.

~ Dysautonomia / Post Orthostatic Tachycardia Syndrome (POTS) which is the inability of my body to properly regulate blood pressure. My BP jumps too high to too low when going from standing to sitting and vice-versa. POTS can cause fainting, dizziness, light-headedness, heart palpitations, racing heart, and exercise intolerance. It also causes third spacing, which is edema in my feet and ankles, sometimes so bad my ankles would look like grapefruit, necessitating the need for compression socks all the time. My doctor actually wanted me to wear compression clothing, but they don’t make it in my size.

~ Generalized Anxiety Disorder (GAD) which in my case is another part of not being able to leave my home. It also manifests in an inability to make phone calls or decisions or speak to strangers, including doctors. It interferes with my ability to self-advocate, causes fears that no one likes me or wants me around, causes other random fear, doomsday thinking, and spiraling dark thoughts.

~ Depression which for me looks like apathy, no desire to do anything, no joy, no hope.

~ Post Traumatic Stress Disorder (PTSD) (see Anxiety, because which is Anxiety and which is PTSD - they have a lot of the same symptoms). I become easily triggered and so easily sent back into replaying things that haunt me, like the death of my first son and other things I'm not going to go into.

~ Hypothyroid which basically manifests as my being really fat and unable to lose weight no matter what I do - which because of the huge fatigue isn’t much in the way of exercise, but no matter what I eat. I also react to every medication they’ve prescribed me for it. Hair loss is also an issue.

~ Degenerative Disc Disorder (DDD) which is pain in my lower back 24/7. It’s not alleviated by drugs, chiropractic, acupuncture, massage, etc. Just all pain all the time, since I was in my 20s.

~ Migraines which are caused by exposure to: gluten, dairy, fluorescent lights, LEDs, CFLs, flashing lights, strong scents, refined sugar or other artificial sweeteners, processed foods, nitrates, alcohol, corn, soy, MSG, food dyes, exhaust, smoke, lack of sleep, strong emotions, hot sun, physical activity, hormones, weather changes, hunger, bright lights, food additives, perfume, petrochemicals, mold, etc.

~ Traumatic Brain Injury (TBI) or Post Concussive Syndrome which includes but is not limited to brain fog, short-term memory loss, inability to think on my feet, lack of recall of simple words, inability to multitask, inability to process things immediately, mood swings, irritability, difficulty concentrating, difficulty or inability to read books, inability to recreate what I just read or saw. Also great difficulty putting faces with names or even remembering the names of people I know well.

~ Poly Cystic Ovary Syndrome (PCOS) which can cause cycts and pain in my ovaries, weight gain, fatigue, headaches, and sleep issues.

~ Tinnitus which is that my ears are always ringing. I can also hear store alarms and sometimes even other radio frequencies or EMFs.  

~ Rosacea, which is just a lovely way of saying my face always looks like someone punched me and then colored me in with blotchy red marker. It would itch and sometimes even hurt and look terrible, adding to my high level of social anxiety.

Then there's the stuff I don't know where to put like hazy vision, flaky eyebrows, and random itching all over my body.  Honestly there are probably symptoms I am forgetting. When the list is that long, there always are. But we'll call this the basics.

I had prescriptions for over a dozen medications, which I had to have compounded because of reactions to fillers, but still I reacted to all but one of them. I have braces for my hand and my hips, a wheelchair and compression socks. I was supposed to wear compression everything, but they don't make anything but the socks in my size. I need my husband to push my wheelchair when I go out because I am not strong enough, plus the POTS, CFS, and EDS make it pretty impossible to propel myself.

And that, friends, is my list of what has happened to my body over time.

If you're interested in reading the Medical Medium book, it can be purchased here. 

Continue reading Ten Months In - What Has Medical Medium Done for me Lately?: Part 2: The Cleanse

day of MRIs...need spoons!

Last month I went for my Day of Scans...I literally spent my entire day in this machine, with only a couple of breaks - one of which was to do a CT scan in another machine. I drove three hours, getting up before dawn to endure this torture. It was a very interesting experience indeed - one I never want to repeat.

This machine is an upright MRI machine  - used for diagnosing Chari Malformation, among other things. So after all these cans last month, I then got to wait around thinking I might, in addition to my ever-growing diagnoses, have Chiari Malformation...which would mean likely a need for brain surgery. You can maybe imagine my state of mind.

My geneticist, who ordered these scans, called to let me know that my insurance now covers telemedicine, which meant I don't have to drive the three hours in a different direction to go to his office for the results - I could just have a skype call with him instead! I am loving this insurance company and what it covers. I'm told this is the result of The Affordable Care Act, so thanks, Obama!

I got my results the other day - no Chiari Malformation! YES!!! But...ovarian cysts instead. not what we were scanning for, but there they were. And...this is something I'm not really surprised about. given my utter inability to lose weight no matter what I do or eat, and my insulin resistance, I'm pretty sure that's PCOS...I rechecked the symptom list and I pretty much have every single one. Yet another dx to add to my ever-growing list. This is NOT ever what anyone wants to collect, let me tell you.

So I made an appointment with my primary, who can also do GYN stuff, and mentioned PCOS. W're going to go ever allthethings I've learned since my last visit with her and get her really coordinating my care...something I seem to need - the one to oversee all the others. I don't think she knows about mast cell activation disorder, but I do think she is willing to learn, so it's a start.

I just keep hoping that as we keep collecting puzzle pieces, one day we will be able to put them all together and find the thing that will help me lose this weight. I think we're getting close, and that it has to do with Dysautonomia/POTS and PCOS....but I have no idea what the solution is yet.

Ever forward. Ever exhausted. Spoon!